Bald Heads are Sexy

1 year and cancer free!

2011-11-12T18:43:00.000-08:00

It's been a year this month and my PET a few weeks ago was negative! I'm feeling good and had an incredible summer which has boosted my mood (hopefully it lasts into the gloomy Seattle winter). I feel generally stress free and worry free on the medical side. All is good.

Therefore, I am discontinuing this blog unless there are big changes. It's become a burden and I have completely lost interested. Sorry to all my followers- hopefully anything I do post will be 6 months or a year from now cancer free!

Thanks for reading!

Amber

Tattoos

2011-08-06T00:40:00.000-07:00

Highway to remission

2011-08-06T00:34:00.000-07:00

My summer on the physical/medical front

2011-07-28T13:55:00.000-07:00

I went to see Dr. Rivkin and get my 4th Avastin treatment last Thursday. As usual, the "fast track" program (if you see your doctor right before your appointment, you are guaranteed no wait for your treatment), was not fast- my appointment for 30 minutes of infusion took over 3 hours. I can't imagine how people do this with 9-5p jobs. Dr. Rivkin was running late as usual, but I arrived early enough that we finished in time for chemo. But I still waited 30 minutes to get in, 20 minutes for the nurse to get the IV in, and over an hour for the pharmacy to get me the drug. WTF? This has been the 2nd time that the nurses have had a really hard time starting an IV. I guess I'm always dehydrated when I go in. Weird because when I am at work I carry my water bottle everywhere and am always drinking out of it. The pharmacy is probably the biggest problem- I mean, what do they do in there? Every time I go to pick up a med they seem to just be leaning on a counter. Does it really take an hour to mix a drug?

Enough ranting, now for what else is going on:

I am having bladder problems yet again. Urgency, frequency, some dribbling. It's been pretty annoying, but inconsistent. This has been going on for over a month, yet Dr. Rivkin can't find anything wrong. I has told him about it and that's why he rushed to order my PET scan. He kept joking about how I was getting older and needed diapers and this really pissed me off. I am 30 and should not be having bladder problems. Especially since this was one of the symptoms of my cancer. But the PET SCAN SHOWED NO EVIDENCE OF TUMOR, which was a relief. He then ordered a culture of my urine to see if I had an infection, but that was negative. So as of now, he says that my symptoms may be a result of damage and fibrosis from radiation. I am still skeptical because I thought that this area was irradiated as much as everything else. Plus I thought that these changes would occur much later, rather than after only 2 years. But he explained that symptoms can occur anytime following treatment. I already have constipation most days, which I never had problems with before. Anyways, he brushed the issue off as no big deal, which was frustrating. So my next plan is to talk to my primary care doctor and get a referral to a urologist, because I think that's the proper route for my insurance to pay for it. It's cancer-related though, so I don't know why Swedish can't handle it. Another insurance issue, go figure
Avastin side-effects.

My urinalysis showed a small amount (1+) proteinurea, or protein in my urine. Doc said that I was dehydrated and needed to drink more water. He will continue to monitor it with pre-treatment pee tests, but presently it is low-grade and may be resolved with hydration. Here is what the Avastin website says about proteinurea:
Proteinuria/nephrotic syndrome (Warnings and Precautions)
- The incidence and severity of proteinuria are increased in patients receiving Avastin compared to controls
- Grade 3 and 4 proteinuria ranged from 0.7% to 7.4% across clinical trials
  - The overall incidence of proteinuria (all grades) was only adequately assessed in AVOREN, in which the incidence was 20%
  - In AVOREN, median onset of proteinuria was 5.6 months (range 15 days to 37 months) and median time to resolution was 6.1 months (95% CI, 2.8 months–11.3 months). Proteinuria did not resolve in 40% of patients after median follow-up of 11.2 months and required permanent discontinuation of Avastin in 30% of the patients who developed proteinuria
- Nephrotic syndrome occurred in <1% of patients receiving Avastin in clinical trials, in some instances with fatal outcome
- In a published case series, kidney biopsy of 6 patients with proteinuria showed findings consistent with thrombotic microangiopathy
- Monitor proteinuria by dipstick urine analysis for the development or worsening of proteinuria with serial urinalyses during Avastin therapy. Patients with 2+ or greater urine dipstick reading should undergo further assessment, eg, a 24-hour urine collection
- Suspend Avastin administration for ≥2 grams of proteinuria/24 hours and resume when proteinuria is <2 g/24 hours
- Discontinue Avastin in patients with nephrotic syndrome. The safety of continued Avastin treatment in patients with moderate to severe proteinuria is unknown
Hypertension: My blood pressure readings are pretty inconsistent. At my appointment I had a reading of 139/78- my highest yet. Yet, before my infusion it was back down to 110/68. I've never experienced "white coat" syndrome- where readings are higher than normal when patients are in the exam room. I'm going to dig out my blood pressure cuff and start taking it myself.
Slow healing: This month I went camping 3 weekends in a row and developed "camping feet" (or dirty hippy feet) from going barefoot, hiking, mosquito bites, and just being around scratchy plants and rocks. I now have a lot of lovely cuts, bruises and callouses on most of my lower extremities (Mark you would run from me if you saw them). Anyways, I had a really really itchy mosquito bite on my ankle, which my big toe scratched raw while I was sleeping. This spot became an ugly blue-purple-red splotchy ulcer (yet painless) which is still healing. It's the kind of cut you would expect from a patient with diabetes or arterial insufficiency (lack of blood flow to bring healing white blood cells and oxygen necessary to make new cells- exactly what Avastinbandaid and my little 5 & 6yr old noticed and became obsessed with my boo-boo. Every one of my other cuts are also healing pretty slowly, so I have awesomely hideous camping feet.

Vision: I've had no more problems from the Tamoxifen. Only those two incidences of blurriness months ago. BUT, after developing a lingering summer cold with 2 weeks of laryngitis, I also had conjunctivitis (pink-eye). I have a couple days of antibiotics (prescribed myself) left and then I can take off my awful glasses and wear contacts again
Sweet tooth: It's back, but now I believe it's completely unrelated. I read dozens of posts from other survivors with taste changes after chemotherapy. Tons of people who went from salt to sweet like myself. They never tell you these things in the clinic- thank god for the Internet and great network of survivor blogs! Unfortunately my teeth are taking a toll (see previous article), and I am planning on visiting an urgent care dental clinic in the next few days to get a filling for a previous cavity and relieve a toothache :(

Don't all these make me the most-attractive person ever? I do have a new sexy, raspy voice! Good thing I'm so awesome otherwise, so I can get away with having so many fun physical problems :)

That's it for this long post- I'll post an update on what's going on in the rest of my life soon!

The Effects Of Chemotherapy On Teeth | LIVESTRONG.COM

2011-07-15T10:22:00.001-07:00

http://www.livestrong.com/article/31610-effects-chemotherapy-teeth/

Article: Scientists image beginning stages of ovarian cancer growth with time-lapse technique

2011-06-18T00:37:00.000-07:00

ScienceDaily (2011-06-14) -- Scientists have created a laboratory model using time-lapse video microscopic technology that allows observation of early stages of ovarian cancer metastasis.

PET, Dr. Appointment and 2nd Avastin Tx

2011-06-17T23:34:00.000-07:00

I had another PET scan today- the second sunny Friday that I spent in the clinic. It took about 2 hours and was fine except yet again I was extremely hungry. I was actually bad this time and had two Chex squares in the car on the way there. And then I licked the salt off some more :) When I got to the clinic I started to get really worried that I screwed up the test, which would be really unfortunately considering I fasted 12 hrs for 2 damn pieces of Chex Mix (but very satisfying). They check your blood sugar before injecting the solution and fortunately I was fine. I then sat in the office room with the lights out and instructions to relax and NOT use my cell phone. I was able to listen to a little Pandora though- (FYI Ratatat Radio has some good pre-PET tunes). After that I went through the scanner for about 30 minutes with my arms raised above my head. My arms fell asleep and of course everything on my face started getting extremely itchy. Frustrating...

After that I got home and ate tons of carbs and sugar. One day of PET prep is hell. We had a staff meeting with pizza and I couldn't eat the crust. I sat and listened and secretly picked off all the cheese and ate it with no one noticing.

Last Friday (sunny day #1), I had my second Avastin treatment and an appointment with Dr. Rivkin. Yet again I was reminded of his awesomeness. When I walked in the first thing he asked me was about my job search. I told him that I still had no luck and that I was worried about losing my knowledge. I also mentioned that I was looking to shadow a doctor or another NP. As I was finishing that sentence he got on the phone and starting calling some NP colleagues! He tracked down one NP who worked in oncology who would be willing to let me shadow. I also get to shadow the NP in his clinic once a week! I still have to finalize details, but I'm really excited! I would absolutely love to work in oncology, and I think I would be pretty good at it :)

As far as the rest of the appointment, I gave him my "list of questions" and he went answered each one in order. ( I recommend that every patient with a chronic illness keep a list- it ensures that you get all of your questions answered, helps the provider, and improves the efficiency and flow of the appointment.)
1.) Blurry vision: He said that my dose of Tamoxifen was pretty low to have this symptom, but he agreed with my to make an appointment with an opthalmologist to get a baseline. Unfortunately I have to go through my primary care provider who I haven't seen in over a year. I now made an appointment to see her next week
2.) Avastin first treatment: I told him it went fine- no side effects. I mentioned how my blood pressure had gone up on too occasions, but when the nurse checked it in the office it was back to its low value. No worries there
3.) CT Scan: Normal. Nothing at all. However, I was due for the PET since it had been over 3 months. I couldn't schedule it at the time because of the lengthy approval process. Getting it within 1 week was surprising because it usually takes around 3. Even though I have financial assistance through Swedish, everything still has to go through my insurance company. However they approved it again :)
4.) Avastin treatments: Scheduled for every 3 weeks. Now they should only be a 30 second infusion, although it always takes an extra hour. Good thing I don't have a day job! I don't know what is going on in the pharmacy but they seem to be the cause of the wait. Maybe it actually takes 30 minutes to mix Avastin?
5.) Weight. 121. I guess I'll be wearing a lot of skirts, because that's the only clothing that seems to fit the best. Unfortunately I live in Seattle and it's Junuary so I'm gonna be cold. But I guess other clothes don't matter that much, considering I wear athletic pants and the same T-shirt 4 times a week.

That's all for now- tomorrow I'm getting up at 7am to strip down to my birthday suit, paint myself, and parade the streets of Fremont (which is conveniently my new neighborhood). Yes, it's time to celebrate the Summer Solstice again! And the weather forecast: 62 deg with a 50% chance of rain. I think I may warm up with a few mimosas before I start the ride :)

First week of Avastin

2011-05-25T12:31:00.000-07:00

I feel fine, and been monitoring for anything unusual. Last week i went in to talk to the social worker and happened to have my weight and blood pressure checked- I was 121lbs and my BP was 128/92! My blood pressure had gone up 20 points on both parts! I didn't believe the nurse's reading, and so I ran around to varying offices in search of an automated machine. After struggling for 5 minutes just to put the velcro cuff on my arm (I could have done it manually twice as fast) I got a new reading- 120/82. Hmm.. that's much more normal but still 2x as high. I guess Avastin does indeed cause your pressure to go up.

Other than my now normal blood pressure, I have no other issues. I guess if you don't count the fact that I only have 2 or 3 pairs of pants that really fit. Darn! I guess now I have an excuse to go shopping ;)

I haven't yet met with Dr. Rivkin to discuss the Avastin treatments, or to even officially go over the CT scan results. I'm going to try to go in tomorrow, but if not I can always see him next week. This weekend kicks off festival season :)

1st Avastin treatment

2011-05-13T17:08:00.000-07:00

*** I posted two times today so read the post below first.***

I'm actually sitting in the waiting room for my first treatment. It's sunny and I'm frustrated because I was just starting my garden when I had to go here. Now I've been waiting for 1/2 hour and then I'm expecting treatment to be over an hour. I'm feeling pretty frustrated right now

I'm listening to some of the patients talking about their cancer experience and it's pretty sad. One guy has had chemo for 13 years. I'm not sure what cancer he has, but it keeps coming back. He is having a really hard time talking and is speaking really slow. He explained that he has a really hard time stringing words together and could even explain where he lived. What kind of quality of life can you have if you cant communicate or think straight? This is just great example of why I'm not doing the traditional chemotherapy ever again...

...I just started the infusion and she answered a lot of questions I'm been thinking about for awhile. But first I must say that Swedish offers a much better lunch than SCCA! They have a veggie sandwich and healthy food such as fruit. Such a change from the crap I used to eat- cheesitz and Oreos. They actually recognize the importance of good nutrition when you are battling cancer.

I asked the nurse what side effects she encountered with patients on Avastin. She said a lot of patients are on Avastin and it's pretty well tolerated. Most commonly she sees a raise in blood pressure and fatigue. My blood pressure is 106/64 (normal is around 120/80), so I don't think I don't think that will be an issue. Hopefully now I won't feel like I'm about to faint all the time. Because the drug prevents blood vessels from forming, they check your platelet count before each infusion to check the body's ability to clot. Therefore, there is the potential for bleeding, and so some patients may have occasional blood noses. She said she has only had two patients have the most serious side effect-abdominal bleeding. These are two out of hundreds on Avastin, and I'm guessing that they weren't that healthy to begin with. I'm not worried about anything right now except the fatigue, although that has been much much better

I have to have the chemo every two weeks until infinity. Actually I have no idea when I have to stop because it is only maintenance therapy. I guess I'll just do it as long as I can tolerate it. The infusion is 90 min today, and then 60 min next time, and then 30 min every time after that. It seems quick- it's Friday though and I definitely need to reschedule my next one earlier in the week.

I also learned Dr. Rivkin is in his 70's and will probably never retire. Apparently, at the time I set up my first appointment he was trying to cut down his patient load- making it surprising that he took me on. I'm guessing it's because my cancer is a little rarer, but mostly I'm sure it's because of my age. He is almost enthusiastic about my case which is a really really good.

He doesn't do surgery- he refers his patients to one of the ovarian cancer surgery specialists. I didn't know there was a specialist for my cancer, but I love the idea. Hopefully this one won't take out any extra body parts.

Scans

2011-05-13T15:02:00.000-07:00

I spent my day off yesterday in the clinic- getting scanned. First I had a CT scan, which includes of course drinking a quart of chalky berry-flavored contrast. It's not really that bad, but I have an hour to drink it. I finished it in 2 minutes and just sat there bored. The scan itself wasn't bad, I've done them so many times. I won't know the results until Monday, or when I schedule my next appointment. I'm not really worried though- I just had a PET and that was fine

Scan number two was a mammogram. This was new to me. First of all, everyone kept reminding me of the question "why are you here?" I'm under 30, with a weird cancer that isn't known to be linked to breast cancer. Plus, since Basic Health won't cover it, it would cost $700. I just figured, why not? it's on Swedish's bill anyways. Turns out my nurse was an ovarian cancer survivor too. She told me that she asked to scan me after reading my chart. We chatted about my experience and she encouraged me to go to one of the support groups, as well as an organization that promotes physical activity by planning hiking trips and offering classes in swimming, yoga, etc. She joined and now races dragon boats. Pretty cool. She also said that she still goes to the support groups and that there are a few younger women, and some others with clear cell. However, she said she always felt a little bad because she was a 8 year survivor and some of the women in the group had active cancer and were late stage 4. The survivors guilt often got to her but she assured me that it was still worth attending the group. In any case, I'm motivated to join a group.

The boob smasher machine itself was weird. It didn't hurt despite the fact that I had to put my boob between two plastic scanners. I had tO put my arm up while the nurse positioned me for proper placement. It was fast and I only had to wait for ten minutes before the doctor called me in to review the scan. As expected it was fine. However when I asked where the cyst was that I've had forever was located, she said that she couldn't see it. Then she said that this was an example of easy it is to miss early breast cancer, even with the most detailed scan

I wrote this a week ago so I did call for another appointment to get my results. The nurse said the CT scan was fine, which I knew was the case. And, I finally got approved for Avastin, and so I start next week!

in a rut again

2011-05-03T22:46:00.000-07:00

I'm in a rut and I feel like I've been trying to climb out of it for months. I was doing so well with my diet and cancer tea and making treatment plans, but everything just fell apart. In the past month I have lost 5lbs and I'm down to 122- even less weight than when I was first having cancer symptoms. My pants almost fell off when I was coaching, and my boss even noticed and told me to fatten up. I've also been so tired and unfocused that I can't really get anything done. I'm run down emotionally and physically. Last week I went in to the doctor and ordered myself a blood count and thyroid test to see what was wrong. I was convinced I was anemic. Although fatigue and weight loss were the exact symptoms I had when I was first diagnosed, I didn't think it was cancer this time because my last PET scan had been clean. After explaining my worries to the doctor, he told me that nothing was wrong with me physically, and my diagnosis= stress. Stress from being tired and jobless, having to move, losing some of my support system, and all the other changes in my life. Stress that has caused so many emotional breakdowns and panic attacks in the past few weeks. I'm can't seem to regain control of my health.
It doesn't help that I'm full on menopausal. I have hot flashes every night which often wakes me up. I must kick my covers off (and my cat) at least 10 times a night. And as I mentioned above, I'm an emotional mess. It's getting embarrassing.

Luckily my entire doctor's office has been amazing. I had a breakdown at the last appointment and got the medical assistant and nurse all worked up trying to help me out. They set me up with the social worker who set me up with prescription assistance to cover the $150 copay for Effexor, an antidepressant that has helped in the past. I had to go off before because it was too expensive, but Swedish got it all worked out. Now I can get it dispensed directly from their pharmacy for free.

I also started Tamoxifen last week. So far I don't have any side effects. Unless you count hot flashes, but I had started to get those before. I'm not sure how long I will be on this but I'm sure it will be awhile. Apparently it interacts with a lot of other medications- including every other psych med that I could be on. It also interacts with most cold medicines. It's not a bad reaction- it just makes the Tamoxifen not work as well.

The social worker also got me approved for financial assistance for Avastin treatments. However, before I can start it, my doc wants a baseline CT scan and a full blood workup. The CT scan was scheduled for this afternoon, and so I didn't have breakfast. I got to the clinic and it turns out that even though the medical assistant gave me a little card with my appointment on it, my insurance company required pre-authorization first. And nobody told me. So I was hungry and crabby most the afternoon. I'n supposed to call tomorrow and get it rescheduled.

I think I may start making protein shakes. The idea of drinking smoothies again almost makes me gag, but I need some way to bulk up. My boss got his wife to bake me bread and cookies with lots of fiber and things like oatmeal and flax. It's pretty yummy and nice to walk into the gym and get a little secret snack. He keeps yelling at me for not eating meat though. Sorry but that's not going to happen!

So the plan is now to get fat and get myself back on track. Getting fat is going to be fun. How many people get to go on that diet? I can't wait. I don't think there is anything I enjoy more than eating (when emotionally healthy). The other day I had one of those bags of ravioli that you can steam in the microwave- I ate the WHOLE bag. Another day I at an entire large frozen pizza. Too bad neither of these things are that great for me, but they're a start. What I really need is a personal chef

Shannon Miller has ovarian cancer...

2011-04-26T13:31:00.001-07:00

http://yourlife.usatoday.com/health/medical/cancer/story/2011/04/Exercise-is-springboard-to-recovery-for-cancer-patient/46289626/1

Angiogenesis- Avastin

2011-03-27T15:38:00.000-07:00

I have no idea who this guy is or even what show this clip was from, but he does a good job hitting the key points. Beware... he talks really really sloowwwwwwwww.
http://www.hulu.com/watch/219298/tedtalks-william-li-can-we-eat-to-starve-cancer

Menopause is a bitch

2011-03-27T15:31:00.000-07:00

Lots more to talk about:

First and foremost = PET Scan = good!!! No sign of cancer anywhere

Now for the rest:

Radiation: No go. The radiation oncologist said there was no reason to have it now because I don't have active cancer. It will always be an option to do it later however
Chemo. Still not doing it. No poison today thank you.
Genetic Testing: This one was interesting. While I was again told that there is maybe a 5% chance of having the BRCA mutation, there is another mutation that is linked to clear cell- Lynch Syndrome. It is the most common heredity cause of colon cancer, and is linked to ovarian, kidney, stomach, intestinal and other cancers. I want to research this condition more, but it's definitely not something I wanted to hear. He said that he was going to possibly look into getting me tested, but that included a lot of paperwork as usual, considering it's not covered under insurance. And if I have that mutation- yearly colonoscopies. Yep. It seems things just keep getting better and better :(
Avastin: I just got a letter from the insurance company saying that I wasn't approved because according to the FDA, Avastin has yet to be proven to be beneficial in the case of ovarian cancer. This was expected however, and so I sent in my appeal to the company itself for approval.
CA-125. I had a blood draw at my last appointment but I haven't received the results. I don't think my numbers really matter at this point considering they were stable despite my last tumor. I guess it would matter if they were 400 again, but I expect it to be under 15 as usual.
PET scan: every 3 months. I'm curious if insurance will pay for it, but either way I expect to get charity care (application in process)
Receptor testing. This was an important one. My doc order tests using a sample from the tumor that was removed: ERPr (tests if my cancer grows in response to estrogen or progesterone) and HER2/neu (a protein that cancers make too much of). And what was the result? My tumor is 50% positive, meaning that it IS affected by and grows in response to estrogen (it wasn't affect by progesterone however). WOW GOOD TO KNOW THIS considering that I have been taking a large dose of estrogen for the past 2 years. Way to go doc for never testing for this before. Was this the reason the tumor came back? Who knows, but it definitely didn't help. Unfortunately we didn't have the results of the HER2/neu test, because the clinic missed that order and didn't test the tumor for that receptor. WTF SCCA? Get it together!
So what is the significance of the tumor being estrogen sensitive? It completely redirects my treatment plan...

Estrogen: I have to stop taking it. When I heard this I got a little teary. Hot flashes are awful! Now I am officially menopausal and all you older readers know what this means. Mood swings and hot flashes where you could sit in a freezer and still have no relief! And all the other lovely vaginal symptoms and bone loss which someone my age should not have deal with. This was pretty depressing news, considering I hadn't dealt with these symptoms since I started taking 2mg of estrogen every day.
Bone Loss/Osteoporosis: Now I have to take more Vitamin D and a drug called a biphosphonate. These drugs stop the breakdown of bone that occurs with menopause. I will probably start these after the next appointment.
Mammogram: as in I need to get one if my cancer is estrogen sensitive. BUT this is a pain- the receptionist spent 15 minutes with me just trying to find a place that takes my insurance. And then when I called them they told me that I had to sign a waiver that I will pay independently because my insurance won't cover it. Despite having a cancer related to breast cancer, you can't be 30 and get one. WTF? Why does everything have to be such a process? Now I have to go back to my doctor and figure out how to work around this.
IUD: I had it inserted because I needed the progesterone to counteract the risk of uterine and breast cancer that is increased with unopposed estrogen. Luckily this is a pretty quick and painless procedure
SERMs- Selective Estrogen Receptor Modulators- MORE TO COME....

A Second Opinion

2011-02-23T03:15:00.000-08:00

A lot's happened since I last wrote here. #1- I unofficially "fired" my oncologist. Not because she was a bad doctor- she just didn't offer me other options besides chemo. So I sought out another oncologist- based firstly on who would accept my shitty insurance- and found myself at the Swedish Cancer Institute with Dr. Rivkin.
I did some research, and was happy to find that not only was he one of the few doctors outside of my former clinic who would take my insurance- lucky for me, he was an ovarian cancer specialist. The topping on the cake: he set up the Marsha Rivkin Center for Ovarian Cancer Research in honor of his 1st wife who had died from OC. While learning the fate of his wife wasn't happy news, it was indicative of a personal commitment to the cause- because he knows first hand the emotional and physical pain involved with OC.

As soon as the new doc stepped in I knew that I should have done this a LONG time ago. He was pretty much awesome. He's definitely pushing 70, but he came in joking with a smile. Actually he reminds me a lot of my highschool best friend's father with his corny "dad" humor. The first thing he said was "Wow, you shouldn't be here- your such an old lady!" I could tell right away that he really cared- this was refreshing because my first impression of my former doc wasn't as good. While she asked me about my medical history she had her eyes on the chart- this guy was almost the complete opposite because he barely looked at the chart and I had to repeat myself a few times (old age?). Either way I felt really good about him from the start- even before he told me his plan.

I didn't have any imaging studies for him to refer to, but he said that's fine- he wanted to get a new PET scan since the last one was over 3 months ago. BAM! He got it ordered for the next week and my insurance actually approved it!

I told him about my financial worries and he told me that Swedish gives the most financial assistance/charity of any other clinic/hospital in Seattle. BAM! He pulled in a social worker and we set up a time to talk about my options.

Things were happening so fast that I didn't know what to do with myself!

So here's THE PLAN

PET scan: Gotta see if anything left. The doc and I are both pretty confident that the scans will be good
Radiation Therapy: Rationale: The exact radiation fields of my previous treatments were not in my medical chart. My recurrent tumor was in my right lower abdomen, which may not have been given a good dose of radiation. From what I remember, most of the beams were directed at the paraaortic nodes near my kidneys- where the cancer had spread. And of course I had request minimal radiation exposure to my uterus (I realize now that this decision may or may not have been a greatest, but who knows why my cancer came back) Anyways, the idea was that more radiation in this possibly untreated area might help. Dr. Rivkin also mentioned that clear cell type is also known to be more receptive to radiation.
Chemotherapy: I specifically stated that I did not want chemo and that was why I was here. Why? Because I don't want to make my chemo brain any worse than it is. (I'm a certified NP for god's sake! I need my brain!) Here's the docs response to that:

The chemotherapy-sensitivity test performed on my tumor? The one that I waited two months for the results? He told me that the test is a bunch of bs and all results should be considered inconclusive (I'm looking into what lab was used and studies on the effectiveness of these tests- so far mixed reviews...)
The Japanese have a different cycle for their chemo drugs than American's. I'm not sure what theirs is, but I did the American cycle (Paclitaxol/Carboplatin every 3 wks x 6 cycles). I don't know where he was going with this but I will research further...
Intraperitoneal Chemotherapy: Didn't I ask my other doctor why she didn't do this? Specifically during surgery when there was ready access to my abdominal fluids/contents? Well Dr. Rivkin wonders why she didn't do it too. He said that this could be an option but would require more surgery or other invasive procedures to allow the drug to access my abdominal fluids. Besides the possibilities of infection and complications from the procedure, the systemic side effects were mild, besides fatigue

According to a study published in the New England Journal of Medicine, patients who received part of their chemotherapy via an IP route had a median survival time of 16 months longer than women who received IV chemotherapy. (Question 8)

The PARP drug: wtf you say? This I'd never heard of either, and so the doc got out a little diagram with a bunch of numbers and letters and arrows connecting all of them (I know a lot about body processes and enzymes but definitely not enough in oncology). Everything he said went right over my head, but basically the idea was that Taxol & Carbo fight the cancer cell using one pathway, and this PARP drug used another pathway. So far studies have shown that it works mostly in cancers linked to the two BRCA mutations, but it is also being tested on other resistant and recurrent ovarian cancers. The drug he was considering was called olaparib and it was taken in pill form and had minimal side effects, including fatigue, nausea, & loss of appetite (been there before). BUT this would require a little more information to determine it's effectiveness

Genetic Testing: I told doc that I had already been to a counselor and she said that I was low risk. I had considered it anyways, but it was at least $700 that I didn't have. Well....Dr Rivkin thinks that it would be a good idea, and affordable if the new clinic could offer charity care. He strongly stressed that "a 28yr old should not have ovarian cancer," despite my concerns that I was only low-risk and that clear cell typically afflicted younger women. Either way, I wanted to look into it. If I happened to have either of the BRCA mutations- it would make treatment a whole lot easier, as a therapies could aim at a known target. Unfortunately, it will also scare the crap out of any woman in my family. So good and bad :(
Avastin: Yep it's on the table again and I'm not opposed to it. I expressed my concerns that it wasn't an option financially and my doctor said she didn't have a compelling indication to request financial assistance. Dr. Rivkin says: "Don't worry about it. We'll get you everything you need. Money is not an issue" If that's true then I'm all for it.

That's a lot of information I just made you read, so if you got this far you are a true fan :) More to come!

Follow-up appointment

2011-01-28T00:47:00.000-08:00

Last week I had my follow up appointment. This time I bombarded my doc with many many questions.

Here's what I learned:

Apparently this tumor test isn't an exact measurement of the response and there is some variability of what will actually work and won't. However, as I said before, both my doc and I were expecting there to be very few, if any drugs that would "cure" my cancer. In any case, Two months later and the results of my tumor sensitivity were in. From what I had heard previously, there were no drugs that had worked, and the next step my doc had considered was Avastin. I learned later that the case was a little different: The lab divided the individual drug responses into 3 categories- good response, some response, and no response to treatment. As expected, there were no drugs with a good response and about 7 others with no response. To my surprise though, there were two that actually fell under the "some response" category- the Taxol/Carboplatin combo which I was previously on, and another combo of a drug named Gemcitabine in combo with Carboplatin.

The side effect profile of Gemcitabine was nearly the same (fatigue, nausea, low-blood counts), and we discussed possibly going this route. Hair loss was probably my biggest concern at the time, and I was sure to bring this up first. My doc sent the nurse in for awhile so she could explain more about the side effects. The nurse said that of all her patients on this drug, very few lost their hair and most just had some thinning. This eased my concerns a little, but I still sat on that exam table conflicted about what to do with this info. The treatment timing was a little different- it would only be three cycles, or about 2 1/2 months. I would get a combo infusion of gemcitabine and carboplatin on week 1, and then return the next week for a solo infusion of just the gemcitabine. Week 3 I would be receive no treatment. It didn't seem all that bad, and because I had tolerated chemo so well the first time I was expected to do just as well. Of course the big difference was that this was the 2nd time around and chemo had lost it's novelty when I knew what to expect. I still couldn't make up mind, especially when I had other questions:

What about the Avastin, the drug that she had previously recommended?

A little aside about Avastin: It is a controversial drug that is currently FDA approved for several other cancers, including breast cancer. Interestingly enough, a few weeks before my appointment the FDA revoked their decision, claiming that the benefits were too small to outweigh the extreme cost of the drug and potential side effects. Avastin (Bevacizumab) works by inhibiting new blood vessel growth to tumors- preventing them from getting the nutrients they need to grow (large tumors grow a significant amount of blood vessels to feed them- something which often makes them difficult and dangerous to remove). Supposedly it's very well tolerated and often given in conjunction with chemo. However, one of it's most crucial side effects, although rare, is that it can create a hole in the gut- causing significant enough bleeding to cause death. It is also very very expensive- up to $100,000 a year- leading many if not most insurance companies hesitant to cover the costs. It is currently not approved for use for ovarian cancer, but is used off-label with mixed results. The FDA decision is interesting enough to check out- Although Avastin has been successful in reducing symptoms and curing some breast cancer patients, many people believe that the FDA reversed their decision based more on the costs than side effects- an unfortunate sign that the government can control how patients choose to spend their money on treatments. This NY Times article I found explains the situation.

In any case, my doc considered this drug before my appointment, but knew that my shitty insurance wouldn't cover it (she definitely confirmed that my insurance was indeed the shittiest). The drug company did, however, offer patient assistance for patients who demonstrated a strong argument for it's use. Unfortunately, right now with the tumor removed, I am not considered to have active cancer. Therefore she couldn't successfully advocate for financial assistance. So that option was out, because there is no way I could afford that drug when I can't even make a single payment on my school loan.

What about all the new treatments currently being investigated in clinical trials?

Not really an option. Again the problem comes up with my current circumstances. There are over 30 Stage II clinical trials on various treatments for ovarian cancer. There are quite a few specifically for patients with recurrences. Yet, again I do not qualify for them because I do not have active cancer. I essentially have to wait until I get worse to get better. How twisted is that?

So how do I decide?

So after being on the fence I finally said yes. The nurse set up an appointment and I was to start the next week. I left the appointment ready to plan the next few months to accommodate sitting in that infusion room and spending the next 2 days of feeling like crap. And thinking about the possibility of being bald, yet again.

I went home and spent the week talking to my friends and family about my decision. And almost everyone I talked to about the situation didn't think it would be worth it. Weird, because so many people I have met in the past had such faith in science that they would have said chemo. But science had failed me the first time.

After much more consideration I called the clinic today and cancelled my appointment. I don't think there was a single factor that influenced this decision- there was just too much mounting evidence against it for so little expected benefits. I just finished nursing school- did I need to make my chemo brain worse all for a treatment that may or may not work? Do I need to put my life on hold any more than it already is? Why should I make myself feel sick when I currently feel completely? I just have hope that there are other ways to fight this thing.

I feel really good about my decision. Relieved is more like it. I'm planning on continuing to improve my nutrition and have been reading up on the influence of diet on cancer. And I'm going to start drinking Essaic tea. I figure that I might as well continue to feel good for now, and if the cancer returns then I can always try chemo then.

Treatment Plan

2011-01-09T21:40:00.000-08:00

Well there is isn't one. I got a call from one of the nurses at the clinic and she said that the tumor had finally grown enough to do drug sensitivity: all of the drugs tested in that lab had a poor response. So the next step is another appointment with my doc in 2 weeks to discuss other options. She suggests Avastin, which is really really expensive ($80,000) and no insurance covers it. But, I may be able to get patient assistance. I'll find out more at my appointment. In the meantime I am looking into getting a 2nd opinion from other oncologists in the Seattle area. So far no other ones I've tried take my state insurance. I've also started fixing my diet and eating lots of foods rich in anti-oxidants. I'm also researching Essaic tea- something recommended by a fellow OC survivor at the cancer symposium I went to in October. I figure that while I'm not getting standard treatments I might as well fight the cancer with other routes. I'm also sticking to my 2 cups of green tea a day idea...

Any suggestions at this point would be greatly appreciated- there are a lot of alternative treatments out there and I don't even know where to begin. So far the chinese medicine and supplements didn't work out so well for me :(

Life.

2011-01-04T13:27:00.001-08:00

When Life Gives You Lemons...

2010-12-27T18:56:00.000-08:00

You say fuck the lemons and bail...

Oh yeah! I just returned from 8 days in Hawaii! I decided that I needed to go on a much needed vacation. Sun, surfing, snorkeling, friends... Exactly what I needed. Except now I am back. Dreary, raining, gloomy Seattle. But at least I got my boost of positive energy needed to start the year off right.

Here's to a good 2011! Of course things haven't been going as well as planned, but I guess that's my life. I'm so spontaneous that I constantly surprise myself :)

More on hair loss and chemo

2010-12-27T18:42:00.000-08:00

Understanding the Impact of Hair Loss in Cancer Patients:

For some patients, hair loss is the thing they dread most about cancer treatment. But caregivers are often much more worried about nausea and fatigue and pain, and they don't understand those feelings

Hair loss represents one more thing cancer rips away from a woman, adding to a long list that includes health and body parts, the ability to work or the ability to have children.

Cancer patients often describe losing their hair as feeling like they're walking around with no skin; they feel raw, exposed, and powerless
Cancer patients describe looking in the mirror and feeling like they're staring at a stranger. What could be more disorienting than not recognizing yourself?

This is an interesting approach: Of course something else that was never offered to me :(

In the Works: Cooling caps tested to help cancer patients keep hair - latimes.com

Surgery and then...

2010-12-27T18:04:00.000-08:00

Wow. I just realized that I missed a month.

I went to my gyn onc appointment and had a quick exam. Everything had been healing well and I was only having a little bladder pain during the exam. She then discussed what she found in surgery. My tumor was, of-course- unusual. Again another reason why my outcome is completely unpredictable. The tumor itself was lightly attached to my bladder and so she didn't have to removed much bladder tissue and muscle. It was also still encapsulated- meaning that the malignant tissue was completely enclosed in normal tissue- something that was completely unexpected. Because of this all fluid washes and other biopsies were negative. Altogether the surgery went very well. Some of the malignant tissue was sent to pathology for future testing.

We then talked about the next step. I had a lot to say and a ton of questions after attending the OC Symposium a few months ago- mainly on new treatments and monitoring measures. After all my reservations about chemotherapy, we agreed that it would be the best option. Why did I change my mind? People may think it's a silly reason, but the new drugs wouldn't cause me to lose my hair. This is a little-talked about concern in cancer research, but really should be addressed. Hair is everything. I'm not one to always care about my appearance- evident by passing on makeup, nice clothes, etc- but losing my hair was just an experience that I don't want to repeat. It's so weird being bald with no eyebrows or lashes. I didn't feel like a woman- more like an undesirable alien life form. I know that this goes against previous posts and the title of this blog, but I don't care. It was ok the first time but now...

The chemo drugs that we discussed were using carboplatin again, with possibly Doxorubicin or Avastin. However, there are many factors that will determine which drug to use. To start, it is unclear whether this tumor was considered platinum drug resistant. Drug-resistance is defined as whether there is a relapse-free interval longer than 6 months. Considering that my tumor was undiscovered until last summer & possibly felt on follow-up examinations prior to that, my interval is unclear. Therefore it's hard to tell whether my prolonged Carboplatin therapy was actually effective.

As a side note: my doctor also mentioned that the bladder area had received significantly less radiation than the rest of my abdomen. Most of the beams were focused on my para-aortic nodes, because this was were the cancer had spread. All of this means that radiation may have been effective because there was no evidence of cancer in that area.

The tissue that was sent to pathology, was apparently being tested for drug sensitivity. I provided a link an article about this on my 11/19/10 post. This is a new method of treatment- offering patients more personalized treatment based on actually cell studies. I was excited to find that this was an option for me. Unfortunately, at the time of my appointment, my tumor cells had not grown to a sufficient size to begin testing. Even now, 6 weeks later, the damn tumor is so slow-growing that the lab hasn't contacted my doctor with the results. This really makes a case that the tumor was present much earlier than diagnosed. It also means that I will not start treatment until we have these results. However, because the tumor is growing so slowly, there is really no rush to start empirical treatment with the past-drug regimen.

Another thing we discussed was the CA-125 test. Clearly I could no longer rely on this test because my values had been normal despite having a recurrence. So how else could I monitor the effectiveness of treatment? My doctor said really the only way was more CT scans, but this time every 6 months.

At the end of the visit I asked about outcomes. Already knowing the answer, I asked her whether my cancer will be a chronic problem for me. Most-likely yes. She said that due to the kind of cancer (clear cell) it was pretty likely that it would recur. I asked about what then and about more surgeries, and she said that with my good health that could always be an option. She did offer some hope though: everything about my cancer- age of diagnosis, odd spread pattern, clear cell type, and the characteristics of the new tumor (encapsulation & it's slow-growth) - made my case completely unpredictable. She did say that she still had hope for a cure. With all the new research, scientists are coming closer and closer to developing a cure. Most drugs would probably become available to patients in the next five years, and she was hopeful that I would still be around by then. It may be five years of frustration, but five years I can hopefully remain strong and deal with

Frequent Use of Talcum Powder Near Private Parts May Cause Ovarian Cancer

2010-12-03T15:46:00.000-08:00

Frequent Use of Talcum Powder Near Private Parts May Cause Ovarian Cancer

Woman to Give Birth on First Transplanted Ovary - Health News | Current Health News | Medical News - FOXNews.com

2010-12-03T15:44:00.000-08:00

Woman to Give Birth on First Transplanted Ovary - Health News | Current Health News | Medical News - FOXNews.com

So cool! I want!

Diagnosis & Anxiety

2010-12-03T15:27:00.000-08:00

Uncertainty about a diagnosis causes more anxiety and can be more stressful than actually knowing that you have a serious illness, researchers reported here at the 2010 annual meeting of the Radiological Society of North America

duh

Thanks

2010-12-02T18:54:00.000-08:00

Just wanted to give a huge thanks to all of those who were so helpful during my surgery.

My roommates: Melanie, Paul, Talisha, Jim, Jasonelle, Paz --> you guys were awesome. Thanks for being there for my recovery. I'm apologize for anything said while I was high on IV Benadryl. I'm pretty sure I even apologized while drugged ;) Melanie thank you for being on the phone with my parents and giving them updates during surgery and for giving me a ride so early in the morning. I'm so appreciative of that and my parents are too.
Shawn: You were an amazing nurse to me. You were there the whole time helping me walk, keeping me company, measuring my pee, making sure that I didn't overdose on narcotics... And thank you so much for reassuring my parents and giving them updates. This definitely could be a promising career for you.
Other friends: Thanks for the support and well-wishes all around. I'm grateful to have so many caring people in my life. Laura and Justin- I haven't seen you in forever and I love that you were able to stop by. I also love the random emails I get from friends I haven't talked to in ages- it's uplifting.
Family: Mom & Dad you worry too much but I feel loved. Ashley, you are so positive about all of this which is so needed. Mom & Dad need that level head. Other fam, I know we haven't connected and kept in touch but I really appreciate the love even from so far away.
Dr. Swisher- you did an amazing job and know your shit! Thanks for managing my unique case and keeping up to date with the new research- it was so reassuring to see you at that Ovarian Cancer Symposium!
Laura the resident: You were the one who told me the results of my first surgery and gave me the news exactly how I would have done it. I love that you were on my case 2 years later! Also I'm convinced that you did my surgery this time. Attendings will never tell you that, but I bet I'm a practice case. No complications or complaints so far...
I highly recommend the University of Washington for any surgery- I guess last year it was in the top 5 or so in oncology.

Thanks again everyone for the positive vibes!! You all are definitely part of the reason I'm still going strong!!

Statistics

2010-12-02T18:05:00.000-08:00

I love this clip from my favorite TV show Grey's Anatomy. It's an interaction between a surgeon and an intern about a case of a patient (who actually is Izzie, the surgeon) with stage IV melanoma that has spread from the skin to the liver and brain. Odds are probably below 10% at the most.

Grey's Anatomy and odds

Hope

2010-12-02T17:58:00.000-08:00

Many things have inspired me to share my thoughts on this...

I know the statistics are bad for this cancer. But who cares. My case is unique. So far many things about my case have been unpredictable. This is why there is hope:

1.) Staging: My dad just told me that my gyn onc would have originally classified my cancer after the 1st surgery as stage II because of the weird spread pattern. It spread NO WHERE else in my pelvic region or abdomen except a couple of nodes and my ovary. The only reason it was staged at IIIc is because of that tumor in the paraaortic lymph node near my kidneys. It wasn't even in my other ovary. This is highly unusual for ovarian cancer.
2.) Age: I'm pretty young. Pre-menopausal at diagnosis of ovarian cancer is very very rare. More common for clear cell type, but still.... I found a couple studies that the outcomes for those diagnosed young are much much better than in older women
3.) Health: No one could have been more physically healthy. I'm muscular (maybe losing a little of that), rarely get colds or recover quickly, and have no major diagnoses. My only issues are chronic back pain, insomnia, and bipolar- which I believe has made me a much stronger person because I have been through tough times so many times before.
4,) Gymnastics: I was a gymnast which is probably the toughest sport out there. I dedicated years of my life working 4 hrs a night conditioning my body and dealing with very very scary tricks. My back, wrists, shins, and ankles hurt everyday but I would get up and tumble or vault on that hard floor every practice. I would rip huge blisters on my palms where later I could barely wash my hair because of the pain- yet I still got back on that bar to finish my routines. I often came home and spent the night with two or three ice packs on various body parts. Cancer is no big deal after beating up my body for the awesomest sport in the world!!!
5.) Recovery: I am a queen at recovery. Yes fatigue is killing me and my sleep schedule is screwed up, but I had major abdominal surgery and was eating a normal diet, ditched the catheter, and walking around 24 hours later. Too bad I had to switch to oral meds in 24 hours too :( I should have stayed longer and took advantage of the decent meals and pampering. I could do without having to sleep with my arm out for the nurses to take my vitals at all hours of the night. And dragging an IV pole around to the bathroom or when taking a walk... Or having to measure my pee volume. I just started doing everything myself and beating the nurses to the punch. I shocked them when they came into the room and I was already walking around the room
6.) Support: see following blog!

So I hope all this helps those Negative Nancies (thanks Ashley for that silly phrase)

Image of Ovarian Cancer Cells

2010-11-23T17:43:00.000-08:00

Possible New Drug for Platinum Resistant OC

2010-11-19T05:33:00.000-08:00

Investigatory Drug for Platinum Resistant OC

Researchers Map The Way To Personalised Treatment For Ovarian Cancer

2010-11-19T05:28:00.001-08:00

Researchers Map The Way To Personalised Treatment For Ovarian Cancer

New Drug Appears To Overcome Resistance In Ovarian Cancer

2010-11-19T05:28:00.000-08:00

New Drug Appears To Overcome Resistance In Ovarian Cancer

Ovarian Cancer Drug Shows Promise With Move To Phase 3 Trial

2010-11-19T05:26:00.000-08:00

Ovarian Cancer Drug Shows Promise With Move To Phase 3 Trial

Night and Day

2010-11-19T03:26:00.000-08:00

Aha I figured out how to switch my blog from one google account to another! and it's not easy!!!

Just thought I'd give a quick check up- you know, the post before the BIG life-changing-thoughtful post that I may have at like 5:36am within the next week or so... It's a touchy science like earthquake prediction :| (Seattle is due for a big one!!! or so they have been saying for weeks now)

I'm feeling ok & off the narcs. And no you can't have any because I may need them for a headache some day ;). So stop asking. The other day I did wake up in pain, at 10am. Although I was super excited to be awake in the am. for once, I had to take a Dilaudid and slept until the afternoon anyways. I guess I can't sleep on my left side. Maybe because the remaining organs on my the right side are stapled or clipped in place and that stretches them?

My sleep schedule is wrecked again. I'm in full on vampire mode. What's funny is that in my house I'm rarely even the last one to get up.... at 4pm! I love the upstairs people: we love sleep and we only see the sunrise as we close our blinds and stumble off to bed ;) Wait! Sun in Seattle?

Ok I'm getting slap-happy cause it's 3:38am. I better re-focus. I have a doctor's appointment at 9am on the 8th. No I did not make that appointment. I think I may have to stay up all night to be up in time for that. SCCA should know me by now- I was always the last blood draw of the evening, in the last radiation therapy spot of the day, and had to reschedule chemo once or twice because I couldn't make my 1pm appointments. I am ridiculous but at least I know my body well enough to know what times to avoid!

I'm not sure what the treatment plan is going to be. Chemo? Radiation? Both? None? Honestly people keep asking me what I'm going to do next and I have to almost remind myself what they are talking about. It's weird how right now it's on the back of my mind, and when some people see me it's the only thing they can think about.....

My steri-strips are off and the incision scar will not be pretty. This time I'm definitely gonna have to get that tattoo. Still deciding of what....

I watched a Grey's Anatomy tonight about all the residents doing the night shift- reminds me of my life right now. On the show the lead characters work separate surgery shifts- as the alarm goes off for the male lead, the female character is just crawling into bed. There are nights when I know what time it is when 1.) the garbage men come and a little later 2.) my roommate's (the one who occasionally has to get up earlier than 2pm for work) alarm going off. Those nights suck.

Girrowls and Owlaffes

2010-11-13T20:25:00.000-08:00

My friend gave this adorable animal to me before surgery for good luck. She made it out of felt. She had asked me what my favorite animal was and I said that I liked giraffes and owls:

Surgery

2010-11-13T20:20:00.000-08:00

Surgery went well. I had a last minute change in regards to my uterus- something which my doctor doesn't understand. I just didn't see a need to take out an organ just because it MAY later house a tumor. There is no way of knowing for sure, and for now I'd like to keep that chance of being a mom...

My doctor said that she was able to remove the malignancy with no problems. It was slightly attached to my bladder and so she took off a layer of tissue from it. She didn't see any other problems. She did a peritoneal wash to biopsy, but there were no other obvious tumors. Pathology is waiting....

Surgery tomorrow

2010-11-09T21:19:00.000-08:00

I'm hungry and waiting to poop. Sounds exciting, huh? Lunch today consisted of a little cube of vegetable buillion and hot water soup. Yum and very filling. Tonight's dinner was jello and a huge things bottle of Blue Gatorade mixed with Miralax. Yay!

I'm not really worried about the surgery at all. Actually I'm more worried about getting up for the 6:30am check in. I have been sleeping in soooooooo much lately that at this point I am almost better off just staying up all night.

So that's it. Surgery. Oh yeah- I'm not getting that historectomy as planned. Someone brought home a documentary on test tube babies and now I can't do it. It may be completely stupid, but at the moment my uterus is fine and dandy- why should I part with it? I will have babies some day....

Dinner

Snack

A little help needed

2010-11-09T21:15:00.000-08:00

Hey everyone,

I figured out a way to get some treatments paid for, or anything else I would need. I'm a member of this awesome bartering website, where you can offer services or goods in exchange for other services or goods. I sold my guitar and now have enough credits to buy something else. Mechanics, dentists, massage therapists and other professionals are on the site and available for trades. My roommate has so far used her "dibbits" to get two massages and have a personal trainer for 2 weeks. These are legitimate professionals who are just offering a service so they too can get services. Pretty cool, huh?

In any case, there are naturopathic doctors and acupuncturists on the site. If I can get people to sign up and use my referral code, then I can get 20 dibits per person. Plus, if you sign up, you get around 50-60 dibits from the start and get a massage :) The site is for the Seattle folk mostly, but if you want to help me out you could join anyways ;)

Thanks!

Dibspace Referral Code

Plan for Surgery, PET results...

2010-11-07T00:11:00.000-07:00

A big sigh of relief. The PET scan made up my mind for me- The cancer is localized, I'm not dying, there is no need to flee or give up on treatments right now. I am actually pretty at ease right now with my medical situation- I may be crazy but the surgery on Wednesday is no big deal to me. YES it's major surgery and I will be out while my doctor carves into me. But I've been through this before. Now I know that there is only one tumor. It doesn't seem to be attached to anything but fat, and therefore pretty easy to remove. The incision will even be right over my old one, and much smaller. Everything seems straight-forward. Now it's just a matter of coordinating. My roomies are going to tale me and be there during to give my parents updates. I'm pretty sure I will be there 3 days again. No big deal.

So now it's time to deal with my other problems. Finances. I can't believe what a mess I am in. I don't think it's ever been so bad. I don't want to complain, but I must comment on how horrible Citibank is right now. I got a bill last month for over $450 for my first loan payment. I called and was like "WTF?" - I just graduated- don't I have a grace period?" Well... apparently you ARE allowed one grace period for the 6 months following departure from school- HOWEVER, I used this time up when I had to take a leave of absence for treatment. Even worse, I also used up 3 months of the only one forbearance allowed on this loan. Because this is a private, living-expense loan, I cannot defer, have additional forbearances, or even change to a graduated-payment plan based on unemployment or financial difficulties- all things which I have been able to do with all of my federal loans. Even with CANCER I still have to repay my loan- $450/month. I called twice and spoke to two supervisors, all who told me sorry, but they couldn't do anything. #$%$^%&%!!!!! WTF? I heard this and basically went off on these people, telling them that they should be ashamed of themselves for even working for such a heartless, shitty company. Not really the customer service reps fault, but STILL!!!

Well I can get a job, right? Hmm. I'm sure you all know how the economy is. I unfortunately have one huge problem getting any old job. I absolutely HAVE TO keep my health insurance. It's based on income- if I make any more than $1100 a month then I lose it. This is equivalent to working for minimum wage, full-time. If I took a job as a barista or worked in retail or something (jobs which under other circumstances I would be working my damnest to get) I would also lose my food stamps- a substantial amount that I depend on. So I would make $1100 a month (which would barely cover rent, utilities, and that absurd Citibank bill) and have NO insurance- owing $$$$ for surgery and future treatments. Is it worth it? NO WAY!

The situation is extremely frustrating- I cannot work as an NP because I haven't taken the test and have been too overwhelmed making life-or-death decisions lately to even study for the test. I can't get an RN job for the life of me because I have no experience. I was pretty sure I could snag one of Planned Parenthood's open positions when I did become certified, but they have filled them since I did my clinical there. Even more depressing right now, I pretty much landed a high school gymnastics coaching team position, but had to turn it down when I found out I needed surgery. I can't spot teenagers after major abdominal surgery.

And my car decided to stop working... the 6-month premium was due... Basically this is what has been on my mind lately. Not the fact that I am having major surgery. Ridiculous, huh?

All we have to decide is what to do with the time that is given to us

2010-11-06T23:15:00.000-07:00

Thoughts, feelings....

This is from an unfinished blog entry I wrote BEFORE the PET scan. Sorry if it is morbid and depressing- this is just what I was thinking at the time. I was debating publishing this at all, but then I just decided to go for it.

READ WITH CAUTION:
----------------------------------------------------------------------------------------------------------------
Dated: a few weeks ago, 4am:

What do you do when you know you are going to die? What do you think about? Where do you start?

I know I am going to die from this. I know it. It fucking sucks because I have just found myself. At 29 years things have just started to come together: school is finished. I love my house, my friends. My best friend is finally on the West Coast. And I discovered festivals. Happy lands. Places where I am truly happy, something which I have been searching for since I was 16. Nature is all around me. I belong here on the West Coast. I am happy.

Now I am at a turning point. Expectations for myself. Expectations of other people. Happiness for myself. Happiness of other people. Who do I please? I am a caring person, I need to make my closest friends and family happy. I take care of them and they take care of me. But I have so much I need to do in this time.

I saw the ocean last month and it changed my life. Granted my mind was a little altered and running high after a festival... I need to be at the ocean. I need to explore the sealife, surf, swim, feel the rhythm of the waves, feel the hot sun on my body as I lay in the sand. THIS IS WHAT I AM MEANT TO DO. And then travel. I was meant to travel. I am an explorer, a toucher, experiencer, feeler. I need external stimuli. I do love that I know this about myself. I need to explore.

So what do I do with this knowledge is my dilemma. Decisions. Decisions that cannot wait any longer.
Do I just say fuck this nurse practitioner thing? I am doing something good for society and giving back, making a difference. But was just going through the hell of school enough experience I needed in that area? Am I done with that part of my life?

After talking to a friend about their work in childcare, I realize that I miss coaching SO much. I can't believe I ever stopped. I hate SU and all the sacrifices I have made in the past 4 years. At the same time, it is school that made me stronger, strong enough to be able to deal with cancer treatment. School GOT ME TO SEATTLE. I never will regret that.

I am meant to work with kids. I am great at it. I get them. I treat them like adults which is something that their parents or other people dont. I respect them. They make me happy. Their innocence reminds me that everything can be ok. I need to be around that now.

Can't you see how confusing this is? Decisions! I'm rambling and my mind is running in circles. Planned Parenthood gave me the happiness that coaching did. Right now that may be the sole reason why I could remain a NP. But I have to take that test! That damn thing is sitting in the back of my mind, but almost forgotten because of my financial trouble, complications with a breakup, and all of this cancer stuff. I seriously think that I am waiting for the results of the PET to make this decision. Because it may not be worth it. I may be dying NOW.

Normal people don't think about dying. I know some depressed people do, not that's normal. And I used to. For so many years in my worst depressions I have thought about ending my life. Now I am fighting to live. How ironic.

Soooooo.... what do I want to do?
Choices: (clearly must be a bulleted list)

Pack up and leave for an amazing overseas adventure. I can meet up with my friend in Thailand and India and then travel the rest of my life avoiding my debt. Very Very VERY appealing
Move to the ocean. Hawaii? Cali? Again with the travel and overseas?
Fuck the medical field and nursing and start coaching again living in debt
Go off the grid and be a traveling bum with a performing arts troupe. Or better yet, a bunch of burners. Just live the life, even if hard, but packing up and seeing where life takes you. Like the movie "In The Wild." Burn my IDs and credit cards and give up my possessions to live out of a backpack. Inspiring..

All of this to be a free-spirit, no ties. But if I'm dying then I should be around the people I love. How do I spend this time? People I love or places to see? Is that selfish? Why can't I have both? The problem is that it is absolutely impossible or unreasonable to even think that anyone else is on the same page with me on this. Nobody fucking gets it. Everybody has plans for me. They speak with reason. Amber, you need money. Amber, you need a career, support, job, housing, food... blah blah blah. I have seen the possibilities of world without money. With only sharing and love and taking care of each other. If only I could take the people I love with me. For this time I have left in the world, these people should just go with me. Give up all responsibilities. It's selfish I know, but I need them. I need them and I need the world.

I need my sister. I miss her more than anyone else right now. I really have no one to talk to about all of this. No objective people who will just listen to me and let me have my "unreasonable" dreams. No involvement with my ex. No lecturing me about finances. No urging me to restart treatment as opposed to living the rest of my life in happiness. My sister can be my favorite person in the world yet we never talk. I love her so much and I never get to see her. She is so far away. But I can never move home.

Crazy talk. Still no resolution. So much going on. I need a personal assistant so bad. I need so much help and I'm not sure how to get it. I can't do this right now on my own. I'm a fucking mess.

Would having money change everything? I hate money and capitalism, and so don't want to run my life. But yet again it does. Money is the root of all evil. I have made so many poor decisions out of desperation for money. Why did I leave coaching? Partly because of money. If I had money right now would things be that much greater? At this point maybe yes. I could hire a personal assistant. I could have the best fucking cancer treatment ever that may actually save my life. I could live all of my dreams of travel, being near the ocean- even flying my parents out and supporting them while I'm dying of cancer. Ahhhhhhh why does money have to matter so much? @#$#^$%&%^&%^&%$!!!!!!!!!!

I just need to stop considering and DO. Stop talking the talk and walk the walk or whatever. I guess I need a sign. Or maybe I just need to pay attention and act on all the signs that have been out there all along.

To be continued....

PET Results

2010-10-26T14:24:00.000-07:00

I got the PET results yesterday and I am happy to report that it found no other tumors except the one near my bladder. Nothing around my intestines, lungs, organs, etc. Yayyyyyyyyyyyyyyyyyyyyyyy!
Surgery is still on for the 10th of November...

PET Scans

2010-10-16T16:09:00.000-07:00

Clink on the link below to better understand how it works and the rationale for use

What is a PET scan?

Positron Emission Tomography (PET)

A PET scan allows physicians to measure the body's abnormal molecular cell activity to detect

Cancer (such as breast cancer, lung cancer, colorectal cancer, lymphoma, melanoma and other skin cancers),
Brain Disorders (such as Alzheimer's Disease, Parkinson's Disease, and epilepsy), and
Heart Disease (such as coronary artery disease).

PET scans are simple, painless, and fast, offering patients and their families life-saving information that helps physicians detect and diagnose diseases early and quickly begin treatment.
PET scanning and molecular imaging provide real life answers to better diagnose illness, guide treatment options, and give patients ultimate control over their critical and vital health care decisions.

Here we go again

2010-10-16T16:04:00.000-07:00

It's back.

The Facts:

I got a CT scan and it showed a 3.5x3.5 mass above, behind, and to the right of my bladder. I knew it too. A couple of weeks ago I started having some bladder problems- I noticed that I was going to the bathroom a lot, and when I had to pee it was NOW. Also I was having problems completely emptying my bladder. I was hoping it was a urinary tract infection but I had no pain and it seemed to last for weeks. Actually now that I'm writing this I remember that back in August at the end of clinicals, I had really wanted to steal a urine strip for a urinalysis. I should have because then I could have ruled that out. Oh well, lots of "should-haves". What's also frustrating is that at my last appointment my doc felt a mass but because I reminded her that I had a fibroid, she assumed it was that. She actually thinks that it may have been there all along, and she had originally thought the mass was connected to my uterus- now she felt that it was separate.

What's weird is that my CA-125 drawn last week (tumor marker) was even lower than before, at 9. So now we know that it is not an effective marker for my kind of cancer- this is bad news because it is much easier and safer to draw blood rather than subject my self to radiation all the time. Now there is no real good way to monitor the progression and whether treatments are working.

So now what?

1.) Surgery. She wants to schedule it as soon as possible but this month she is fully booked. So she talked to her scheduler to fit me in sometime in the next few weeks. The first available was November 1, which I considered for awhile and then changed my plans. It may sound crazy to you, but Halloween is my favorite holiday and I have so many parties and events planned already for the weekend. Plus, my best friend is flying in from SF for all the fun. Do I really want to spend the day of Halloween doing a bowel treatment and drinking only clear liquids? Hell no. Even if I spent that day at home, I wouldn't want to go under the knife after a weekend of binge drinking. This may be a life of death situation, but I'm choosing to live my life. This thing has been there for months already- how much is it going to matter to delay it a week or so? Now my new date is November 10.

2.) Further lab tests. For some reason I haven't gotten a CBC or metabolic panel recently. I wonder how my platelets are because last time they were really high which puts me at risk for clotting. Also, I've been pretty dizzy when standing lately- more than usual. I wonder if I'm anemic?

3.) More scans. With my exceptional ability to work the system and the thanks of my very understanding doctor, I got her to authorize a PET scan through the SCCA's charity care program. My Basic Health insurance refuses to pay for them, as well as the charity care which has helped with so many other bills. This is the test she wanted to run initially. The scan is ideal for finding other areas of cancer in the body, superior to MRIs or CT scans. By doing this scan, I would know the extent of the cancer and whether to do the surgery to remove the bladder tumor, or to just go ahead with other treatments, i.e. chemo. Basically, she was saying what is the point of taking out one tumor when my body is full of them :( She did reassure me though that ovarian cancer rarely spreads beyond the abdomen and the CT did not show any other tumors.

This is the plan for now, because everything else depends on the results of the PET scan which is scheduled the 23rd of October. Now it's just planning again for yet another year of my life battling this thing

Importance of Hope in Cancer

2010-08-14T09:45:00.001-07:00

http://www.medscape.com/viewarticle/725068?src=mp&spon=24&uac=145677PT

Chemo Brain

2010-08-14T09:42:00.002-07:00

http://www.newconnections-cancer.org/issue_33/01.html

A year out

2010-08-14T09:42:00.000-07:00

So I had what I think was my 9 month check up and everything was great- CA-125 = 13 which is in the range that it's been post-treatment. I am due for another appointment in a few months where I am going to have a CT scan of my abdomen and pelvic area. I've had no symptoms and my fatigue has been much better by taking Ginseng 100mg daily. It's a wonder drug! I read a study on the effectiveness of 2000 mg in Ginseng for post-cancer treatment fatigue and went out to find it. In the study they used American (Wisconsin) ginseng but all I can find here is Asian. Still works though!

So I have been busy busy busy! This summer.... I went to lots of awesome music festivals and camped in the Cascades & the Olympic Rainforest, went to the Washington coast, rode naked in the Solstice parade again, had a few fun barbecues.... I also met my boyfriend of 3 months. But really, all I have been doing for the last 8 weeks is frantically trying to finish school.

In June I graduated- not really, I just walked in graduation but didn't recieve my degree, as we had 8 more weeks of clinical. My parents were in town and so they came too. I walked with barefeet and wore my colorful sunglasses which got some dirty looks from some, and "awesome glasses" from others. And my bf screamed "Skittles" as they said my name :)

So this summer quarter has otherwise been nothing but a huge pain in the ass. You won't beleive it, but SU SCREWED ME AGAIN!!! Go figure. We have one last 8 weeks of clinical to get all the experience we can get before the REAL WORLD. This means having the required 240 clinical hours to pass the course and finish the program. Well that didn't work out too well because I got two sites, each twice a week: one at a two-provider pediatric clinic, and the other at a community clinic. When I set up the days it turns out that the provider's availability overlapped, so I could only go 3 out the 4 days I was assigned too. This means 8 hours a week less than I'm supposed to. Furthermore, when I got to my pediatric site, it turned out that over 70% of the population was only Spanish-speaking, and I speak NO Spanish. I guess in the past they have always had students who were either fluent or knew enough to get by. Even when the patients spoke a little English, my preceptor would still use Spanish and fail to translate all the important guidance and treatment plans to me. So immediately I called my instructor and notified the placement coordinator that I would need another site....She replied that there were NO MORE sites available to students. The quote from an email I recieved said that this cohort was already 50% larger than the last, and that they hadn't anticipated the added students who were returning from last year. They offered no help and said that I should just try to get in as many hours as I could. One of my preceptors did say that I could go Fridays, but that's the day I have our 3 hour seminar. So off the bat I was short on hours.

I also found that the community clinic was lacking a little community. I don't know how this clinic remains open, because there have been 3 days where I saw one patient and sat there for 6 hours in order to get more time in. I got some studying done, but what a waste of clinical experience! Last quarter I saw at least 15 patients a day! This was extremely frustrating since I already feel behind due to my year off.

So after a few weeks with no help from the school, my increasing frustration led me to find my own sites. I called up a pediatric site and Planned Parenthood- both places where I had done a rotation before. Immediately my call was returned and the coordinators said they could maybe work something out. WTF? How easy was that? If I can get two sites in one day, why is the school so incapable of doing so over a span of severeal months? So after 3 weeks being short on hours I happily restarted my favorite clinical site looking at vaginas all day ;) (actually I do more birth control starts than anything else). After my first day I talked them into going an additional day. Both days turned out to be fabulous, with supportive, knowledgeable practitioners, doing something great for the health of women, all while decreasing the world population at the same time ;) I love this clinical, and I am now pretty much independent, with my preceptors just signing scripts and helping me with the ridiculous billing process. I've seen some cool things, such as a girl with two cervixes and a split uterus. Another woman had an ectopic pregnancy while on the pill, and had the fetus removed and all the appropriate followup- only to have the same symptoms of pregnancy for the next month. Turns out that even with all the ultrasounds and exams the doctor had missed a second pregnancy implanted in the uterus! Yesterday I also met one of the clinic managers who is desperately looking for new employees. I'm pretty confident that PPH will hire me when I get my license :)

Unfortunately, adding the extra days didn't really help make up for the 3 weeks I was already short on hours. Now I have to be in clinical 38 hours a week, when all of my classmates have Fridays off for seminar and homework and their theses. Not me. I had to make time to write and edit the damn thing when I was already super busy in the clinic. Total hell. This leads me to the second problem this summer:

My thesis. I was working on my 1st rough draft when my chair/prof left to go to Africa. She was doing great things teaching safe sex, but no time and minimal access to the internet. I sent her half of my first draft and she revised it, but then after I sent the other half a day later I heard nothing back. The thesis was due yesterday and I had no one to review my draft nor the ok and signature needed to turn it in. Now I am trying to resolve the mess with constant emails to other profs, the presentation coordinator, and the assistant dean in order to get an extention! Such a pain in the ass! Fortunately, what I've heard so far is that I will be able to turn it in tomorrow afternoon.

Now all I have left is 4 more days of clinical, my thesis presentation, a chart writeup, and my final evaluation which is tomorrow. The end is soooooooo close....

On a happier note, we just got our hot tub to work as of yesterday, so I can now go home and relax all this added stress away.....

pics to come soon!

Article: CA-125 Screenings Looks Promising

2010-05-20T18:43:00.000-07:00

Study Shows That Testing CA-125 Looks Promising

News article: when you're diagnosed with a rare cancer

2010-04-20T18:02:00.001-07:00

When you're diagnosed with a rare cancer
What happens when you get a kind of cancer so rare that your doctors have no clear path to treat it? Throw out the map and your fear, and try to embrace the strange freedom.
http://www.msnbc.msn.com/id/36182363/ns/health-cancer/from/ET

Processed meat tied to ovarian cancer risk

2010-04-20T18:00:00.000-07:00

Women who eat a lot of processed meats, such as salami and hot dogs, are at a higher risk of ovarian cancer, according to a new Australian study.
http://www.msnbc.msn.com/id/36668680/ns/health-cancer/from/ET

Doesn't really explain my case since I'm a vegetarian who hasn't had processed meat in at least 12yrs

Shout out to my ND & new NP

2010-04-01T17:13:00.000-07:00

I just wanted to do a little promo for a friend:

My colleague, the newly certified ARNP and established Doctor of Acupuncture and Oriental Medicine & Registered Herbalist, Chris Kleronomos, is the one who created the individualized treatment plan for me. As I mentioned before, he suggested a regimen of chinese herbs, nutritional supplements, and acupuncture to alleviate the side effects of chemo and kill cancer cells. I am so appreciate and think the whole experience would have been a lot worse without his help. So thank you Chris!!! He is occasionally featured on the television show The Doctors. Check out his site.

thanks Chris!

3 month check up - A-OK!

2010-03-18T16:53:00.000-07:00

I had my three month checkup and everything is ok! I think my CA-125 count was 6 or 7 which is the lowest I've had yet! Nothing on the exam either. I will still be on 3 month check-ups for the next year or so...

Other than that- school starts in 2 weeks and I might have hours at work FINALLY. Still looking for jobs...

I have been doing fun things like going to some good shows and playing trivia

First 3 month checkup soon, work, school updates

2010-03-06T15:09:00.000-08:00

Second checkup is this coming Friday. I'm kinda nervous. I'm going to get my blood test on Monday, so that I can have my doc tell me the results rather than me calling in 3-4 days. I don't feel any different and don't have any symptoms, but I keep questioning whether what I know what bloating really feels like. I don't think I'm bloated. It's been so long since I've had PMS that I forgot that whole part :)

One thing I have been following is my weight. I always have weighed myself- I used the number within a couple of pounds to measure whether I need to eat a little better or work out a little harder. People give me that "but you're not fat!" crap and that I shouldn't care, but I always remind them that the reason why I am not fat is that I pay attention. Anyways, it's weird with my condition now, because my weight is really important to follow now. I don't want to lose pounds because that was the main symptom that led me to seek medical help. I don't want to gain weight because that means it may be water weight or bloating from ascites. To complicate things, I have been working out a little more so I am building muscle and my weight is increasing a bit. So as of now, I don't really know what my base weight should be. What I do know is that at the beginning of January, after going home for the holidays, I gained about 9 lbs.(thanks Midwest :( ). Now I have slowly lost that weight, but is that ok? How much of it can be attributed to eating better and working out? Fortunately it has been stable in the past month. Still interesting though.

Hmm.. what else. I have a on-call RN job at a Psych organization. I basically give meds and chart and that's about it. Stuff that they are overpaying an RN to do, as it is an LPN job. Well I had 5 days of training and a staff meeting, and NO OTHER HOURS. Nobody is going on vacation. It's actually a fun job and the clients are great, but I need money. Still searching... At least I have my foot in the door. I figure that I only have to work 3-4 shifts a month to live on. Just think of how much I could have been making in these past 9 months :(
I wouldn't have to take out MORE school loans and wouldn't be so bored all the time.

As far as school goes, I am registered for my clinical course and found out one of the clinics I will be working at- it's exactly the same doctor who I was working with last winter when I was diagnosed! I'm relieved because he knows my whole situation and so I don't have to explain why I may be a little behind. I hope the information comes back quick. I have been studying up but it's not the same as actually practicing medicine..

Ok more updates to come soon!

Medscape: Symptoms of OC Not Much Help in Detecting Disease

2010-03-06T14:48:00.000-08:00

Just got this in my mailbox.

Symptoms of Ovarian Cancer Not Much Help in Detecting Disease (Medscape )

The symptom criteria includes bloating, pelvic or abdominal pain, urinary urgency or frequency, and difficulty eating or feeling full quickly. I had everything but bloating. But to complicate things I was studying Pelvic Inflammatory Disease and so was convinced that I had that...

My hair every morning

2010-03-05T12:35:00.000-08:00

Evolution of Hair

2010-01-17T22:59:00.000-08:00

I thought this was interesting looking back through my pics this past year: I'm guessing on dates to save reading back through all the posts

Before diagnosis:

When it all started falling out (FEB '09):

When I shaved it off (Feb?)

Fun with wigs: *ignore the silly demeanor and hand on the beverage

Hats, scarves, and bandannas:

No eyebrows or lashes (Aug) *tan!

Regrowth (Aug) *I was fuzzier than the bird

(Sept-Oct)

(October)

(Dec) *a little implusive blue dye

(Dec) *featuring a little bleach with an overexcited sister and her curling iron

IUD

2010-01-17T22:15:00.000-08:00

A couple of weeks ago I got my Mirena placed. I thought it would be a painful procedure, but it wasn't bad at all. I asked my gyn onc for a referral to someone who has done a million of them, and she referred me to a gynecologist who has put over 1000 in. She prepared me the night before by prescribing me a drug to dilate my cervix so that the sound (the stick that measures the depth of the uterus) would go in smoothly. Then she injected lidocaine during the procedure to numb the pain. All in all it was pretty easy- much different from the experiences of the many women that I have seen undergo the procedure. After that I had some cramping and then I was fine.

Until... When the device is placed in the uterus, the string is cut so that it sticks out a little from the cervix. This is useful to check for correct placement. Well a week after getting the IUD placed, I could no longer feel my string, and so made another appointment to see my doctor. When I went in again, the doc tried to visualize the string with a colposcope (magnifying glass to view the cervix) but couldn't locate it. So I had to go get an ultrasound to verify the placement. The technician eventually found the string and ensured that everything was in place. It was also a good learning opportunity, as he explained what he was looking for on the ultrasound-- basically the IUD looks like a bunch of lines that I never would have been able to identify on my own (the picture above is not MY uterus and IUD- but this shows how hard it is to actually see the device via US). What was most beneficial, is that we both got to look at the image of my uterus and pelvic cavity, which showed no signs of change (or tumors) other than a few uterine fibroids. Soooooo after this whole ordeal, I got an inadvert checkup on how things look on the inside.

Otherwise life is booooooooooring- no job still- just working a little on my thesis and studying a bit. I am still sleeping as late as possible- mainly because there is nothing else to do. I did start working out though!

Mirena Facts

1st Checkup & Vitamin D

2009-12-08T17:31:00.000-08:00

hello blog...

Friday I had my first post-treatment checkup which went well. My doc said the plan is blood work every 3 months and CT scan every year, and to report if I develop any symptoms. I asked her what kind and she said mainly bloating, weight gain, and loss of appetite from the cancer seeding to the abdominal cavity. If I had any problems then I would get a CT scan. Mainly the best monitor is my CA-125 tumor count. She said it will take several tests to find my average level, which could take a year to establish. She also reassured me that because my initial count was so high (412; norm 35), it would be easier to detect cancer growth than with other tumors.

I got my blood drawn on a Friday, so I had to wait until today (tues) to get the results. They drew my vitamin D level as well- I didn't know why but then I researched:

Using newly available data on worldwide cancer incidence, researchers at the Moores Cancer Center at UCSD have shown a clear association between deficiency in exposure to sunlight, specifically ultraviolet B (UVB), and ovarian cancer
In general, ovarian cancer incidence was highest at the highest latitudes in both hemispheres
Taking 1,000 international units (IU) of vitamin D 3 daily appears to lower an individual’s risk of developing certain cancers – including colon, breast, and ovarian cancer – by up to 50 percent,

Interestingly enough I live in Seattle where everyone seems to be Vitamin D deficient because of the lack of sun. I guess I could say that this contributes to one of the many answers to the whole why me? question. I wonder how effective supplementation is for curing cancer or preventing remission... I was taking a high dose in my smoothie but stopped doing those after I swore off frozen fruit. I guess I need to buy some more. So far my levels are normal (40 something).

Back to the more important result: CA-125 = 13 !!! That's my normal when I was on chemo so it's very good. Yayyyyyyyyyyyyyyyyyy. It was a hard 3 days. Honestly I don't know what I would do if it comes back. To have to go through that entire process all over again- with new chemo drugs and having to lose my hair AGAIN. A whole year of that crap. Most of the time I don't think about the cancer at all- I have so many other things to worry about (job search, waiting to return to school, growing hair). It's like I erased the whole bad part of last year. I seriously can't believe how I put up with all that shit. It's nice to say that I have moved on and will continue to move forward until every three months when I have that checkup. When I am forced to think about it again, I naturally get all worried. This time I really was debating waiting to call about the results. Of course they don't call me- I have to call them. I was thinking that again I would put off knowing so that I could enjoy the holidays. Actually last year that didn't really work because I was trying hard not to tell my parents and that was agony. If the cancer was back this time it would totally change everything. A definite damper on my X-mas trip back home.

In sum, everything's normal and I'm cancer-free. Thursday is my birthday and also is when the SU nurse practitioner first felt my mass. So it's been almost exactly a year since the signs and over a year since the symptoms began. I'm looking forward to a better birthday and the start of a new year.

Surveillance Mode Details

2009-10-20T22:58:00.000-07:00

The doc says I'm in surveillance mode. Basically this means that I get a CT scan every year and get my tumor markers checked every 3 months. Otherwise I'm supposed to notify her if I start having any new symptoms. So far so good.

I am scheduling an appointment to get an IUD placed. I need the progesterone in the Mirena to balance out the daily estrogen that I'm currently taking. Rather than take progestin in pill form every 3-4 months, I can leave my Mirena in for over 5 yrs. I'm not looking forward to the pain, and I have a nice little stash of oxycodone just for the occasion. I have actually had the experience of inserting one and I know for a fact that they are extremely painful unless you have had kids. Thank god for drugs...

Leave of Absense

2009-09-25T12:11:00.000-07:00

I think this will be the second to last post for awhile unless something new comes up. Everything seems to be going ok on the cancer front. I have an appointment with my gyn onc on Monday so I will update about that. I am so happy to be done with everything and my big sunburn on my back is finally starting to heal, although now it looks like some kind of fungus because it's lighter than the rest of the skin on my tan back. I also got my port removed a couple of weeks ago so I am most excited about that. No more alien probe/tumor on my chest!

Other than that I have come to another major roadblock in my life. After talking with the nursing program director and dean (or yelling rather), it turns out that I won't be returning to school until spring quarter which is in March. Fuck that. I was told that I would be able to finish up with independent study, doing clinicals this fall and winter and then being done by March. The director instead tells me now that they have no one to teach the one-hour seminar included with the course, and so now I have to reenter the program with the upcoming cohort at the same time I took time off. They said it was "for the best" so I could allow myself to heal fully. Honestly, this is the dumbest thing I have heard in awhile because taking 6 months off IS NOT good for my education at this point. I need continuous clinical experience- with a big break like this I am likely to be extremely behind. I'm scared that I will be so behind that I will again have to repeat the course. WTF?!? Fuck Seattle U. I'm so done with their fucking program.

Sucks cause now I have no job and no school, meaning that my loans go into repayment mode soon. And I lose all the loan money I have been using to live on. Of course I told this to my dean and they apparently don't give a shit.

So now I am figuring out what to do with myself. Yesterday I returned from a 2 week visit to the Midwest to see my family and friends. Now in a week I am going on a road trip along the west coast from Seattle down to L.A. with a good friend. Should be another 2 weeks. Like I have anything else to do... I have been looking for jobs but so far have been denied new graduate opportunities because there are only 1-2 openings at the major hospitals around Seattle. I have no experience for the rest of the nursing jobs, plus no one is willing to hire an RN who will just quit as soon as she finds a nurse practitioner position. So frustrating.

Well that's all for now. Hope everyone out there is well.

Radiation DONE!!!

2009-09-04T21:19:00.000-07:00

Radiation DONE!!!! 'Nuff Said.

Chemo DONE

2009-08-26T17:23:00.000-07:00

Chemo is DONE! hopefully I never have to spend another day in the chemically-rank infusion ward! Now just 6 more radiation treatments!

I have enough hair to make little spikes! And full eyebrows! And a stupid rectangular sunburn on my back where I got radiation :(

Radiation sucks!

2009-08-18T19:06:00.000-07:00

Not much to report. Radiation sucks. I'm so tired that I can do about one errand a day, and that errand is to drive to radiation. I don't have any diarrhea, but I have been nauseous a few times in the last week. Kinda randomly. And I am starting to get really bad chemo brain. I'm forgetful and am having a hard time bring up words to mind when speaking. Arghhhhhhhhhhh over a week to go...

I see the radiation oncologist once a week to go over my symptoms and the progress of the treatments. At our last meeting he recommended that I do an extra 3 treatments aimed at the area over my para-aortic nodes where the highest tumor was found. I was like, whatever, what's 3 extra days going to matter? Well we'll see now cause I'm getting really tired of this.

My doctor hadn't order a CA-125 for me yet so I demanded to get it drawn last week. I feel like they have totally forgotten about me- I hadn't had the test in almost 3 month! But all is good, I got it back and it was 9! I think that is my second lowest number yet. And it had better be cause I'm not doing this double whammy preventative chemo-radiation combo for nothing!

Other than that... My sis came to visit last week. We spend a good portion of the time napping or watching movies on my bed. She was just as tired as me! We did go to Karaoke and a fun Madonna-Elvis party though. She dressed up like Like-A-Virgin Madonna in a white corset, and I did the whole cone-boob thing. They were rocking costumes! Pictures to come...

Radiation grind

2009-08-07T22:15:00.000-07:00

Just been doing the grind lately: chemo on mondays, radiation monday-friday. Radiation is definitely annoying because I have to plan my day around whatever time I have to be there for the day. I don't really have a set schedule at the moment, so each day I ask what's available and show up then. It only takes 20 minutes, but it's 20 minutes to drive there. They only offer it M-F until 4:30pm as well, so I don't know what people do who have a life to work around... what if people still want to work? Not that this applies to me at all, where I concern myself around whether or not it's warm enough to go to the lake and what to make for lunch. At least I get to socialize a little more during the day (usually I am alone during the day because everyone else is at work) at radiation- I have the same 3 techs every time. One girl is super cool- she is my age and is married to a musician. She listens to the same music as me and always changes the pop-music which is playing on the ipod when I come in to her special mix. It makes the whole process just a little easier...

Chemo isn't so bad. It sucks to have to be back in the Infusion ward. I was so excited to leave that place. I even have the same nurse as before. Luckily, I don't have all the side effects this time- radiation caused much more nausea and fatigue than chemo last week. All I have now is that good ole' metallic taste that I missed so much...

Other than that not much is going on. I went to another funk show last night which was pretty awesome. I wore my long rainbow-colored striped socks with my red wig. I looked like I shoulda been in a Skittles advertisement. Anyways, this is the first time I've worn my wig in awhile. I finally have just enough hair to not wear anything- no scarf, no wig. Last week we had this record-breaking heatwave- 103 deg high- so I got used to going scarfless. It's kinda nice because my hair is really soft and my head stays cool. I never thought for the life of me that I would be sporting a supershort pixie cut.

That's it for now..my sister comes next week to visit so I can't wait for that!

Radiation Prep & Procedures.. and the NEW plan

2009-07-31T01:50:00.001-07:00

I'm rushed to get some stuff up here so this is a half-finished blog from a week or so ago...

Today I went to my radiation appointment to get scans taken and to prep for the real deal.
The first step of this appointment was to prepare a cast for treatments. In other words, the techs had to find the exact position that they would need me to be placed so that the beams would be on target. Since I would be going everyday for treatment, I would need to be able to lay in the exact same position every time. So to accomplish this, they had me lay on the table with my legs over this thin blue mat. Then, they filled the mat with two chemicals, which when combined formed a foam that surrounded my legs. This process took about 10 minutes and was quite pleasant because the chemicals were very warm. After 10 the foam was hardened enough to make a nice little leg-shaped trough. I asked why they only wanted to make a leg cast, since it was my pelvis that would be irradiated; the tech explained that keeping my legs still would stabilize my pelvis, and other barriers would keep me from turning. Little did I know that they other, more permanent plans to keep my pelvis in place. In addition to the leg cast, they used lasers in a cross-pattern to ensure alignment. So to make the points where the lasers would intersect they used tattoo. That's right, tattoo. I have 5 very small black dots permanently inked into my skin- 3 in a line on my torso, lower abdomen, and above the pubic bone; 2 to the right and left of my navel. Not what I was expecting for that second tattoo. I know I will NEVER get another tattoo on or anywhere near my pubic bone again! I remember I asked the tech if he could just make a little design or something, but he told me no- his forte was circles. Oh well, worth a shot. Anyways, each time I was to come in for a treatment, the techs could now line up these lasers with my tattoos and know exactly where to irradiate.

The rest of the appointment was about 45 minutes of CT scans. Just me laying on this table half-naked while this massive xray machine took pictures from side to side and from up top. My arms were above my head and my circulation was starting to get cut-off... very uncomfortable. But finally I was done and ready to meet with my lovely radiation oncologist. Apparently he is the only gynecological radiation oncologist in the area. Well, he told me that he and my gyn onc had a new plan for me. This one I wasn't expecting at all. Instead of doing radiation for 5 weeks on both sides of my pelvic lymph nodes, he thought it would be just as effective to only do the right side- where the original tumors were- as well as the para-aortic nodes (the spot near my two large abdominal blood vessels where some of the tumors had spread). He reasoning was that this way would greatly reduce the amount of radiation my uterus would be exposed to. Of course, I liked this idea a great deal. However, he said that he had discussed with my gyn onc that the treatments would be most effective if combine with low-dose chemotherapy with Taxol as well. The plan was, then, to do 5 wks of radiation (M-F) and chemotherapy once a week (M) for 5 wks. Basically a double whammy of treatments for 5 whole weeks. As crappy as this sounds, the combo plan has shown success in lengthening remission times, and is the best way to protect my uterus. So there it is. This is my next 5 weeks....

More to follow soon!!!

Another Cancer Blog

2009-07-16T16:12:00.000-07:00

I randomly came across this ovarian cancer blog by a woman who has CCC (clear cell carcinoma). It's pretty comprehensive but if anyone wants to check it out...

Also.................... everyone reading this should be a Follower! It's quick, just click on the link on the side bar- ------------------------------------------------------------------------------------->
you don't need to be a member I think, but if you are it does allow you to comment. It would definitely be nice to see who all is reading this!

Oh and shout out to Adam who is done with his radiation treatment!!!!! woohoooooooooooooooooooo! Way to keep strong Adam!!!

Finally... Solstice Nude Cyclists Pics

2009-07-15T00:11:00.000-07:00

Solstice parade video

one more video - 0:53

Solstice Pics (beware lots of nekkidness!)

Hair update

2009-07-14T23:19:00.000-07:00

So I would take a pic but my camera busted this past weekend

Head: dark blonde peach fuzz. it's about an inch in some places but sparse and short in others. I saw a newborn today in the clinic and I have to say that the baby and I were sporting the same hairstyle- I have lots of places where the hair is growing in slower than others- especially on the sides. It looks like I have a receding hairline. I really really hope that I am like a baby and it will eventually all grow in. Otherwise I may be wearing a scarf my whole life :(

Eyebrows: um.. yeah still not there. I look pretty stupid, especially when I am tired. I don't even have many little stubblies here...

Lashes: I have one.. ONE.. eyelash on my left eye. It's a reminder of how long and black they used to be. Everyone says I should pull it but I want that reminder... there are little blonde stubblies coming in thank god.

Legs: some short hairs but blonde!!!

Pits: longish and blonde!

I have decided that in honor of my new hair that I am not going to cut or shave it for awhile, if ever. Especially since it is growing in lighter. It feels wrong to shave something I have been waiting so long to get...

I am at the point where I am feeling more comfortable being bald. I don't wear the wigs often because of the heat, and when it's really hot I walk around my house or yard bald. I just wish that it was growing back evenly because then I could really just go bald all summer.

The last two weeks, radiation consult

2009-07-14T22:04:00.001-07:00

whoaaaaa so it's been over 2 weeks... lots happening non-medically speaking...

I had a great 4th- went to a BBQ and watched the fireworks from a balcony in Fremont. They were choreographed by a DJ set blasting out of an old-school boom box. Also complete with Michael Jackson hits in remembrance. Later that night we saw an awesome funk band and danced the night away...

I spent most of the last few weeks house sitting for a friend in an apartment a little south of downtown. I was feeding their dog (who had a mohawk) and taking advantage of living in an urban environment with a pool and hot tub on the roof of the apartment complex. Basically this meant that I spend a good portion of the day dozing off or reading Harry Potter in the sun with an occasional dip in the pool. Not a bad way to pass the time, eh?

Last week I had two visitors all the way from Australia, something which I had been looking forward to for awhile. I had met one of the guys in the train station while traveling in Barcelona, and ended up taking the train with he and his friend to Pamplona for San Fermin (running of the bulls). We had crazy fun times there, and then I ended up meeting back up with him in London, where I stayed with him for almost a month. When I came back to the states, he came and visited me in St Louis, and we have kept in touch on and off throughout the years. He and his brother had now decided to stop in Seattle to visit during their US tour. It was great to see him again as it had been 7yrs since we had last talked face-to-face. I had a great time, showing them around Seattle to all my favorite places- it was like seven years hadn't gone by! Anyways, it was great to get to see him again and catch up- I am definitely planning a trip to Australia as soon as I graduate!

Since my last post I have also started clinicals again. I am at a family practice with two nurse practitioners at least once a week. So far it's been tough because I feel out of practice with examinations, diagnoses, etc. I don't know how long it will take to get these skills back but it is frustrating. Fortunately my preceptor is supportive and a great teacher. The problem is that her patients are so complex- way beyond my level. A guy came in the other day with a history of stroke, diabetes, asthma, and high cholesterol, and he was complaining of a constant severe headache and blood stools. That's quite a workup I did! The clinic still uses paper charts and his was like 2 inches thick! All of the patients seem to have at least 3 chronic conditions which are still in the process of stabilizing. At least I am seeing a lot of interesting cases- we just sent a lady to the ER today for possible Stevens-Johnsons syndrome- a really rare medication reaction...

Ok so back to the medical:
So I had my appointment with the radiation therapist last week. He was this nice, really straight forward guy. He also had a student with him who didn't seem to know anything. Wow I know how that feels.. Anyways, he started by explaining the role that radiation may have in my case. Basically, radiation is not the standard therapy for women with ovarian cancer. Usually they have surgery to remove the ovaries, uterus, and fallopian tubes, followed by 6 cycles of chemotherapy. pretty much what I had minus the hysterectomy. However, because I have the weird, one-in-a-million, super-aggressive and chemo-resistant clear cell type, he recommends that my treatment be a little more aggressive to be sure to rid my body of all the remaining cells. He basically gave me two options: 1.) 5 weeks of radiation to my pelvis or 2.) 9-12 months of low-dose chemotherapy. Hmmm let me think about that one. Chemo for an entire year? HELL NO! It would only be one of the drugs I was on, Taxotere, but it would still have all the regular side effects: increasing nausea, loss of my now baby-fine head of hair, incapacitating fatigue, numbness and tingling of my fingers and toes that within a year could affect my grasp and ability to write, walk, etc, murder of my red and white blood cells and platelets (making me more anemic that I already am). I can't imagine feeling shitty for an entire year- and because it was low-dose I would be getting it more frequently, meaning my side effects would increase over time.. In any case, my immediate thought was FUCK THAT so I asked the doc a little more about the radiation. He said that each session would be about 40 minutes and take place at the clinic M-F. The radiation would be aimed in an upside-down Y shape, so that it would hit my pelvic and inguinal lymph nodes. The side effects were different for everyone, but the most common with radiation to that particular area were fatigue, nausea, and diarrhea. At this point I made very clear how much nausea, how much diarrhea, etc and he said that maybe it would be 2-3 episodes of diarrhea a day and that the nausea could vary- in any case the symptoms don't usually show up until the 3rd week and get progressively worse as you approach the end. He then went through the more serious side effects, which he assured me were rare. Because the radiation was aimed at part of my intestines, it could damage the tissue and cause strictures and places where bowel could no longer pass through- causing obstruction and resultant surgery. I could also have skin damage, although this was unlikely as the beams would be aimed well below the skin. Secondary malignancies was another big one, as the radiation may actually cause other types of cancers later in life. Finally, he brought up the one that concerned me the most at this time- infertility.

As much as my oncologist doesn't agree with my decision to keep my uterus, I would still like to try to one day give birth. Therefore, I was very interested in whether or not radiation could affect the functioning of my uterus, thus affecting my ability to carry a child. Well the Dr. told me that with radiation there is always a possibility. He said that he has known several women who had carried their babies to term after pelvic irradiation. He also recognized that there would be a significant risk of damaging the blood vessels which supplied the uterus, as they are interwoven with the lymph nodes that would be targeted. He then cited several techniques where they could tuck the ovaries behind the uterus as to preserve fertility. As he said this of course I got upset, because I had no ovaries to protect (thinking again about my healthy left ovary that was removed). He assured me that he would do his best to prevent damage to my uterus, and that a detailed CT scan would be used to map out the exact placement of the beams so that they would spare as much healthy tissue as possible. He also reminded me that chemotherapy (or option #2) would best preserve my uterus. He then told me that he would make me an appointment for my detailed CT scan and mapping procedure, and in the meantime I could think over my decision. I told him that it was fine and that I would most likely go ahead with the radiation.

So there it is- I have made my decision to start radiation and am scheduled to have my CT scan tomorrow. I will most likely start my first treatments this week. I did snap a little when the receptionist called me to make the appointment- she said that before I came in for the CT scan that the MD wanted me to get a pregnancy test. When she said it I started to get really angry and asked why, as there is no way I could be pregnant. She said that as long as I could verify to her that I was really sure I couldn't be pregnant that it would be fine. I told her that I was really sure that I had no ovaries and that shut her up for a minute. I know she was just doing her job but I was angry at the doctor for obviously not taking the time to read my chart and the results of my surgery. How can you be a gynecological radiation therapist and not know the status of your patient's ovaries? Idiot. I bet it was the med student who ordered the test... Anyways, I was insulted and did not need that little reminder of my infertility. And I should be able to refuse a test if I want to. This just reminds me of the two weeks before surgery when the various doctors made me do a total of 4 pregnancy tests, including one the morning of surgery...

That's all for now.. Oregon Country Fair experiences to follow...

CT SCAN

2009-06-22T22:31:00.000-07:00

CT SCAN NEGATIVE!!!!

Diagnostic Procedures, Cats & Naked Biking

2009-06-22T00:10:00.000-07:00

So it was an exciting weekend!

First of all, I had an AWESOME time biking nude in the Solstice Parade. It was an exhilarating experience and I am sooooo glad I did it! There were about 500 of us this year, which was first apparent after there was no room at the Palladium for the painting party. It is actually pretty difficult painting yourself and others when you are trying to dry your armpits with your arms to the side and when you keep "exchanging" colors with everyone who walks by you. I had to repaint about every 5 minutes. It was fun though to be amongst tons of people sharing paint and admiring their body art. After the painting area was cleaned up we gathered in front and spent about 30 minutes assembling for a group picture (impossible) and walking around photographing each other. I personally loved the girl painted like Pac-Man. Awesome ideas. Next year I will definitely plan better and work on my ideas- there were a few pitfalls (not getting there early enough so my base coat wouldn't dry, having my friend help me paint my planets when he couldn't draw a circle; leaving all my stuff at the Palladium so I had no clothes later..). After we took our group photo we all gathered for a short ride around Ballard- another area of town that wasn't expecting us. I didn't know what to expect but was greeted with honks and waves and simply stunned people. The coolest thing was that when we passed clothed bikers, we cheered and yelled and actually got two to strip right there in the street and ride with us! By the time we ended up at the parade I was so psyched up. There were people 10 rows deep lining the streets all cheering and waving and photographing us for like 10 blocks. It was awesome! We rode and waved back. When we got to one intersection, a group painted like cops stood next to the real cops and helped direct us on the route- it was hilarious. There was a guy in silver skateboarding in and out of the crowd and catching rides. When we got to the end a few of us circled back around so people could get more shots. It was like being a celebrity. After we were done I had to take a trip back to get my clothes and got a little lost. So that was also kind of fun- being the lone rider on a major street. After I got my stuff I spent the rest of the day in a sarong hanging with friends and enjoying the rest of the festival. It was all- around a great day! And don't worry, I will upload my pics if you don't have facebook! Here's an article in the local newspaper.

This weekend we also had some other news. My roommate's cat has been missing for a week. It was tough cause we had twice heard from the neighbors that a similar-looking cat had been hanging out in their yards. So excitedly we went searching, only to find from a neighbor that there was a dead cat under their stairs. Unfortunately it was our little Bandit- I guess he was probably hit by a car and then crawled . It was disappointing and sad. Especially since our neighbor's cute little dog was killed by a car a week ago. Sad week for pets :( My kitty is especially sad and acting weird.

So back to medical/cancer stuff:
Last Wednesday was my cardiac echo. I still don't have the results yet if you're wondering.. It was actually a pretty cool procedure. I just lay there on the table on my left side and the tech slid the ultrasound probe around my chest. I also had a 3-lead ECG. She let me see the screen which was amazing because I could see my valves clearly flapping around with each beat. I could see all the structures of my heart, and got to watch her measure the flow in each chamber. Very cool. She said that everything looked alright but of course the cardiologist has to read it.

Thursday was the CT scan. I forgot how long it takes! I was there for hours! First they give you two huge bottles of berry flavored chalk to drink (barium contrast). You drink the first one (choice of chilled or room temperature), and sit there for 40 minutes to let it digest. Then you drink number two and wait 4o minutes. The reason they do this is so that the first swallow gets to your small intestine and the second is still in your stomach when you get the scan. Anyways, then I get called for the scan, during which I get injected with yet another form of contrast. I lay down on the scanner and it goes back and forth beaming rays through me. Sometimes a little smiley face on the machine lights up to tell me to breathe or hold my breath (to raise my lungs to get a better image). After the scan, I have to go back into the waiting room for observation because some people react to the contrast. The whole thing took like 4 hrs.

Well that's it for now! Happy Solstice!!!

This week

2009-06-17T00:54:00.000-07:00

I'm in a not-so-positive mood at the moment. I'm just crabby because I have been feeling bad and not sleeping well. And I'm getting pretty bored laying around all day- even if 70% of the time it's on the lake. At least I am getting tan. Yesterday I officially started my job hunt- I'm missing coaching so bad that I'm dreaming gymnastics. I hope there will be at least one team coaching position open, but I have to factor in the fact that I would have to work around scans and radiation AND clinicals. What a pain. I'm looking for nursing jobs as well, but it's the same deal with scheduling- PLUS the fact that I haven't really done clinical RN stuff in a year. I just need to get down and apply because at least I can start with options to choose from.

I decided that I'm going to be a painted cyclist in the Solstice Parade this year. I recruited some friends as well. For people outside of Washington, one of the Seattle artsy neighborhoods- Fremont- puts on a huge Solstice parade every summer, along with a street fair and "art cars" (cars decorated with the most random things) exhibition. One of the highlights of the parade is a group of at least 300 bikers who come out first- all in body paint and "au naturale," The painting jobs are usually pretty amazing, and people also decorate their bikes and helmets in streamers and paper mache figures. Last year there were two ladies painted like American flags, bumble bees on tandem, and a group of 3 Waldo's cycling around. I decided on a space theme and so tomorrow I'm going to buy some colors of textile acrylic paint. I won't say anymore about the experience until it's over- but this Saturday is the ride. Solstice is my favorite part about Seattle summer and this weekend should be awesome.

Well tomorrow is my cardiac echo and I will definitely report back on those findings as soon as I get them. As far as Thursday's CT scan- I'm not going to know anything until Monday's appointment with my gyn onc and I will report as soon as I know. (So no calling every second mom and dad!). I also should get my latest CA-125 count. Oh- I talked to the nurses and got the CT scan ok'd to include my neck. So now I can get a double check on the thyroid lump that's still there. The doc said it was just a lymph node and it isn't hard like a tumor, but I still want to be sure.

aaah so finals are over and now what...

2009-06-13T02:46:00.000-07:00

Took my last final EVER today and passed! so the theory part of the program is pretty much done. All my classmates get to walk in graduation on Sunday- I'm really happy for all of them because of all the crap we've all put up with in the program- yet I don't think I can go to the ceremony. I'm still a little bitter that everything is taking sooo much longer for me- I don't get to walk until next years graduation- although I am scheduled to be done a quarter before that. I think it may be for the better in some sense, because I can ease my way back into clinical and will have nothing else to distract me. Clinical is what it's all about anyways. Seeing patents, diagnosing, etc... All that obviously needs some work, although I am getting first hand experiences all along the way.

For the past few weeks I have been noticing that I am having a lot of trouble climbing the hill from the beach and park to our house. It's not that steep, and takes about 1o min normally to walk home. Lately, however, i have had to stop walking five or six times to either catch my breath or because my legs were hurting. At the same time, I was having those palpitations that I talked about in the last blog. Well, today I had an appointment with my Primary Care PA for medication refills and so I mentioned this to her. She listened to my heart and verified that I had a harsh murmur on the left sternal border. (For all of you nursing crew- what's the differential?).

I have always had a hard time hearing murmurs- mainly because I have never really heard one, and secondly because of some post-infective hearing loss. I could barely hear it, but I knew that something was going on... The chemo nurses has asked me lots of questions about my palpitations but no one other than me had ever listened to my heart. In any case, she scheduled me for a cardiac echo- one more diagnostic test that I will learn about first hand to add to all the knowledge I've picked up this year so far. Basically this test is an ultrasound of the heart to look at its structure, blood flow, valves, etc.

So what could be going on with me could be three possibilities: 1.) I'm so anemic that my heart is working too hard to oxygenate my body. 2.) The paclitaxel or carboplatin chemotherapy drugs have cardiotoxic effects and may have damaged my valves. or 3.) I have bacterial endocardititis, an infection in my heart from my port-a-cath line.

I'm hoping for the anemia cause I know that already. I just have to wait and see if anything gets worse before Wednesday when I have my echo. Then, Thursday I have the big CT scan. Lots to look forward to (and lots of reasons for anxiety)!

CA-125 reading

2009-06-10T21:46:00.000-07:00

I found this tonight as I was clearly procrastinating from studying for my final (at least this is medical!)

"in clinical practice itwould appear reasonable to accept a confirmed (at least twosamples) doubling of the CA-125 from a baseline value (witha minimum baseline at the upper limit of normal for the laboratory,usually 35 U/ml) as an indication of disease progression. Lesserdegrees of change in the CA-125 value may indicate lack of response(so-called "stable disease") but should probably not be consideredas actual disease progression in the absence of supporting data(e.g., new ascites, presence of a new mass on physical examination)."

also:

"In addition, even when the same lab is used, a variation of up to 14% can occur in the same patient."

So blah blah- my CA125 needs to go up to at least 64-84 to be significant evidence of cancer progression. I'm way under that yay!

I also read that CA 125 levels can have a cut-off of up to 200 to be benign disease- levels >200 are almost always cancer. Ha to all those people who told me that my CA125 elevation of 412 wasn't much to worry about! It was hundreds over the limit!!!

Some lady on a blog had a pre-treatment level of almost 6,000!!!

LAST CHEMO!!!!!

2009-06-08T11:27:00.000-07:00

I'm writing from SCCA right now getting my last chemo! Yeaaaaaaaaaaahhhhhhhhhhhhhhhh!!! I was looking back at how often I wrote before and noticed that I write so rarely now. I think it's because I am just so sick of everything... Sick of being sick. Sick of planning my week around feeling sick. Sick of having no eyelashes. Sick of answering "how are you feeling?" I never know what to say cause when people ask me it's always a week after chemo and I am feeling fine. except for being tired. Tired because my sleeping problem has gotten so much worse. The other night I couldn't sleep at all and spent the next day in this zone. I'm immune to Benadryl and Lorazepam and pain killers. Nothing helps. I miss appointments the next day because I went to bed late, and then those drugs make me so groggy and unmotivated. It's hard to explain why I missed a 1pm appointment. I mean seriously, it's retarded that I can't get up at that time. Especially now that it's getting so nice out.

I have been enjoying the weather. I've been walking to the beach almost any sunny day- especially during our 80's heat wave. Now it's around 60-70 so not so good. I like being sweaty ;)
This week I hope it's going to be nice. I have my big final on Friday and I'm worried. It's always ridiculously hard in these theory classes. Especially when you get a powerpoint with 262 slides. It's not going to help that I know I'll be nauseous and not want to study. I just want to lay in bed and do crosswords and watch "Freaks and Geeks"

My blood counts this week are still super low- even after the immune-boosting Neulasta shot. Hemoglobin and Hematocrit are 9.9 and 29% when the norm is supposed to be at least 11.5 & 36%. White blood cells are 3.4 when they should be 4.3. I don't feel any of this of course, and have had no problem with infection. I have noticed that I get palpitations- meaning that I can feel my heart beating against my chest once in awhile. It usually happens after I climb the hill from the beach to my house, but sometimes it occurs randomly at rest. I think my autonomic nervous system is just screwed up. My blood pressure is still really low- 100/70- last time it was 99/63 or something like that. So when I stand up I am really dizzy and have to hold onto a wall or something or else I will faint. It kinda feels good, but I am at risk for falling. I can't explain why it's so low because I drink lots of water and don't work out that much. Oh well, must be the chemo.

What's weird is that I am growing hair again. On my head there are some 3/4 inch hairs - some are brown and some are blond. I hope it goes mostly blonde. I was looking forward to that! In any case, it's sparse but all over. My eyelashes are totally gone and my eyebrows are half-way gone- like I plucked them from the middle out. But near the nose side there are tiny little stubbly hairs. I don't get it- why is it falling out on 1/2 the brow and growing on the other 1/2? I guess the new hairs are pushing the old ones out? In any case it's going to look pretty weird with stubble eyebrows. Better than no eyebrows I guess...

So I have a CT schedule a few weeks from now, and then meet with my doctor a couple of days afterwards. I'm pretty nervous about it- what if they find something? that would be devastating. Sucks to have to do another round of something else. It doesn't help that I got my last CA125 and it was 20. Last time it was 7 and it generally has been ranging from that low to 12. I asked the nurse about this and she said that sometimes it can go up from allergies- which I do have a runny nose all the time. I hope that's what it is because that's at least twice from the highest point of my range. Hope hope hope it's not going to go up again- the next blood draw is 2 weeks from today. I have to wait that long to get the results. If it goes up again than I am in trouble... I know one thing that it could be- I have been so sick of smoothies that I have been pretty inconsistent in making them in the last month. Maybe they really were helping kill the cancer cells if I had some left. In any case I am definitely starting them again from today on. I'm just sick of fruit..

In two weeks I start clinical again. One day a week starting 1/2 time at a place in the Northgate area- about 30 minutes away. I think I'm ready but apparently my professor doesn't think so. She wants the preceptor to watch me do a full physical exam and history- two things which I think I am pretty good at. I haven't lost any of that. What I was just beginning to learn and will have problems with is diagnosing again. What really pisses me off is that she is making me redo my midterm and final- where she also observes me. It's nerve racking as hell. Especially with her. A couple of Fridays ago she pulled me aside during our break to tell me about possible clinical sites for the summer. This is sorta how the conversation went: I had told her that I wanted to be in Seattle- something which is not that unreasonable. She start freaking out and telling me that she didn't know if she could get me a site as they were trouble finding them as it was. I asked her why, because I had a SEattle site this quarter- why couldn't I go back there? Nope too hard to find one she says. Then I told her that I was thinking about radiation. That really got her going. You never told me that! That complicates everything! How come you didn't tell me that? When is it? What's the schedule? I have to know the schedule. No preceptors going to let you go 1/2 time... etc etc. Well I told her that I didn't know because I hadn't talked to the therapist yet- they were going to call me sometime after chemo. Well she goes on a rant: Amber you need to know this stuff. You need to get on top of things. You never keep me informed and you need to tell me things. Now I don't know if I can find you a site... Anyways, this goes on for 10 minutes right in front of the classroom door and her tone is not night nice and she is yelling. I had to explain to her at least 5 times that I didn't know and that I'm not at that point yet. I ended up ending the conversation by telling her that I had to move my car and walked away. The whole situation left me pretty pissed off. What does it matter- no preceptor has ever cared that I left early so why should this new one care? Why couldn't she just find something and I could discuss it with the preceptor? Why are other people getting placements in Seattle when I really really need one. The school hired someone to find clinical sites so why was she involved anyways? Most of all, I HAVE WAY TOO MANY OTHER THINGS ON MY MIND THAT ARE MORE IMPORTANT THEN ALL THIS STUPID CRAP! Shut the fuck up! Arghhhhhhhhh. She ended up finding me a closer site who would take me 1/2 time if needed. God I knew it wouldn't be such a big deal. She needs to get control of her stress cause this was totally inappropriate. If I am going to have to work with her this coming quarter than I am going to have to step up and tell her to stop yelling at me for stupid shit and speaking to me so inappropriately in front of my classmates. I mean, geez, I can't even ask her a question without her biting my head off. At least I know it's not just me- I think everyone has to deal with her bipolarness.

Well that's all for now. Wish me a good week of studying and luck on the final!

Chemo girl!!!!

2009-05-28T20:18:00.001-07:00

hair

2009-05-28T20:09:00.001-07:00

Ok so I'm confused. I now have at least 1/4 inch of hair on my head now. Good right? Except I have exactly 1 bottom eyelash on my right eye, and none on my left. And the ones on the top I can count on one hand. And I have about 10 hairs each for eyebrows. So why is one place growing hair and the other disappearing? I'd rather just be bald with brows and lashes...

http://www.hotchickswithnoeyebrows.blogspot.com/

What can't you find on the internet?

Hair restoration?

http://www.ishrs.org/surgical/surgical-eyebrow-eyelash.htm

Chemo 5

2009-05-27T00:18:00.000-07:00

Well it was last week. And it sucked.. I felt crappy all weekend which was a major buzzkill. This weekend was supposed to be loaded with activities: Northwest Folklife Music Festival on Friday, Sat, and then the Sasquatch Music Festival on Monday. Parties and camping in between. I had all these plans... and no stamina. Friday I felt so crappy and nauseous after my morning class that I skipped my afternoon one and slept until 7pm! All my friends went to Folklife that night and I stayed in bed. Saturday I made it out for a few hours, but was beat after 4 hrs in the sun and skipped another good afterparty to go to bed early. The same thing on Sunday. I finally felt pretty good Monday and so drove 2 hrs to the columbia river gorge for Sasquatch. I had planned on camping but trying to figure out how to park overnight and meet up with people wasn't worth it. The day was warm and beautiful and finally I felt good. The shows were pretty good, including Ben Harper who was amazing from about 10 rows back! I was excited because I also got to meet up with my fellow blogger Adam- we kicked it most of the day and shared our frustrations ;)

All in all, I'm totally ready to be done with this shit. It's been such a long process. Months of planning my calendar around one-week of "sick" days. Who else gets to plan when they are gonna be feel like crap?

The Gift of Cancer

2009-05-13T18:18:00.001-07:00

I came across another cancer blog and found section that I thought was perfect to describe my feelings and what cancer has given me:

I have realized just recently that when I am thinking positively, I am thinking about things that are real . . . the love and support of friends and family, the knowledge that my body is healing from the chemotherapy treatments, and most of all, the tremendous opportunity I have, thanks to my illness, to stop the speed of life and take time to reflect on what is important.

If you want to check out his blog:
http://lymphnotes.blogspot.com/2008_04_01_archive.html

Orcas Island Pics

2009-05-13T17:58:00.001-07:00

This is the view of the surrounding islands from Mt. Constitution, the highest peak in the San Juans

Sunset by the fire

Digging for clams

View of our beachfront cottages

Not much going on

2009-05-13T17:34:00.001-07:00

So there hasn't been much going on lately. I've been feeling pretty good in comparison to the other rounds with this new drug. I noticed that I have much more energy which is very nice. My appetite is the same as always which is pretty good- almost too good... I keep craving crap: i.e. sweets, chocolate, fried crap, chips, etc. I am still under my normal weight at 128-130 so I'm feeling lucky that I can get away with eating all that stuff. I have no more than 5 eyelashes left on my lower lids which makes my eyes much less prominent. It reminds me of when the first time I saw my red-haired friend without her black mascara- her eyes were so naked with no definition. Amazing how eyelashes change your appearance. I still have most of my top set although they have thinned. Now I wake up with more goop in my eye because I have nothing to protect them from the dust. My eyebrows are really thin but I haven't lost anymore than from the last round. What interests me is that I have a little more hair growth than before- light brown long hairs spread sparsely throughout my scalp. I'm wondering why only some follicles are producing hair- it makes me worried that I will have bald spots in the future- God i hope not!!!

I spent last week back on Orcas Island with a group of 8 friends. We stayed in cabins and BBQed all weekend directly on the beach. We went clamming and filled an entire bucket! We also saw some other odd creatures: a 10-legged orange starfish, 2 sets of seal/sea lion bones; a 14inch or so large millipede-like creature that freaked me out, and a geoduck. When we found the geoduck we accidentally cut it with the shovel and a tiny crab was inside the stomach. It was amazingly still alive and so we freed it from being dinner. We also found a crab just sitting on the beach so we caught it and later cooked it that night. It was pretty delicious but I was pretty disgusted the way it was cooked: whoever was preparing the water let it boil and then turned the burner off so that the crab was initially cooked in warm water- so that it experienced a much more painful death as it was slowly cooked to death. We also went kayaking and fishing, although nobody was able to catch any fish. We did catch one thing: my friend dropped her camera in off the pier and so we were able to fish that out! All together, it was fun times with good friends on a beautiful beach

I'm spending most of my time now studying, as last week my professor warning me that I was at risk of failing her class because I had failed two quizzes. She recommended that I withdraw from this quarter and take MORE time off. Well, I said fuck that! There were 11 quizzes this quarter and I only did poorly on those because I wasn't there for the lectures as I was in Illinois with my mom. So now I am determined to prove her wrong and ace this class! After all, I have an entire week to study so there is really no excuse for me not to do well. The only thing I am worried about is that my final is AGAIN the Friday after chemo. This time I am going to try for an extension because last time I was wiped out the whole week and brain dead.

That's all for now- Chemo # 5 on Monday!

Chemo 4/ Follow-up visit

2009-04-29T03:26:00.000-07:00

Wow, I guess I lost interest in this for awhile. Sorry guys, I know people are looking for updates. Well now you're gonna get a long one because it was a pretty important day.

Well Monday I had round 4. I also had an appointment with the my gyn. onc- the first time since I began chemo. I was looking forward to this appointment for awhile because I had gather up a bunch of questions to ask over the last few weeks. Most importantly, I wanted to see what her plan was for my next step of treatment.

Monday morning I got a ride to my appointment thanks to a helpful roomie and was ready to discuss my future. It started off with a quick bimanual exam, which the doc said was perfectly normal. Relief #1- although I haven't had any signs or symptoms that would indicated there was a new mass. I also had her check a few other things out: since I was diagnosed, I had noticed some other abnormalities on my body- just small weird things for which I could use some peace of mind that they were normal findings. Sometimes before I fall asleep I lie in bed and do a self-check of lymph nodes and bumps. I can't really say that I'm being paranoid, because it was doing this that helped me go to the doctor in the first place. (This is also a great time to do your breast self-exam- as I always recommend to my patients). Anyways, I had noticed a small lump or nodule on the right side of my thyroid. It moved when I swallowed and was somewhat soft- which I know is a good sign. Also, I had noticed recently that my tonsillar lymph nodes were bigger than normal. Furthermore, I had two small bumps on my scalp which were pretty noticeable now that I have no hair. When I ran my finger over them they kind of moved with the skin. I don't know how else to describe them. Finally, the last thing I noticed was a small fatty lump on my back near my hip bone- right below my tattoo. Alone these things wouldn't normally concern me too much, but oddly all of these abnormal bumps are on my right side- the same side as my original tumor. It is frustrating because I don't have enough clinical experience with abnormal finding to know if these are benign irregularities or serious signs. After all, I have felt nothing but normal thyroids, and most people have swollen neck nodes most of the time. Anyways, I asked the doctor about all of these things and she had a hard time even feeling them. She said that they were normal lymph nodes, including the thyroid node. The thing on my back was a lipoma or benign fatty tumor. This was somewhat of a relief, although part of me is still concerned. After all, I had brought hard pelvic nodes to her attention when I first saw her and she has said those were benign- and I ended up actually having cancer (although I don't know if those nodes were even involved). So I asked her when I could get the once thing that WOULD give me peace of mind- a full body CT scan.

The doc said that she originally did a CT of my pelvis, abdomen, and chest- which apparently included the area up to my thyroid. This is because ovarian cancer usually spreads to the pelvis, then abdomen (usually bowel omentum or lining), and then chest/lungs. After that, it would show up along the lymph chain- first in the nodes next to my sternum and between my breasts, and then the ones above my collarbone. She checked these during my exam and they were fine (plus I check all the time) She looked at the CT report again while I was in the exam room, and noted that the radiologist had not seen anything suspicious in the thyroid. She did remind me of something that which I had completely forgotten since the first time we talked- the last CT did show that I had something near my esophagus- a 2cm mass. The radiologist had noted that it looked benign so I figured that there is no point being concerned at this point. If it shows up again then I can undergo a scope to go down my esophagus and investigate the tissue further. In any case, she said that I am scheduled for a CT after Round 6- and this time it's a full body one. She didn't want to do it earlier because apparently the contrast is hard on your kidneys and she doesn't want to increase the demand on my body more than i already am.

She then asked me how chemo was going and I told her that I was having minimal nausea, bad fatigue, and neuropathy in my fingertips. The neuropathy immediately concerned her. She said that most people don't have this symptom until after the 5th or 6th round. Unlike what I had been told previously, some people do not completely regain sensation in their fingers. With my young age, she decided that it was best to switch my Taxol (the one causing the neuropathy) to another similar drug which I believe is Taxotere. This drug does not cause neuropathy, and as a bonus only takes 1 hr to infuse as compared to 3. So I got out that day around 2pm rather than 6. However, I was informed of a rather disturbing side effect: some patients have extreme water weight gain- often to the point that they are so swollen that they don't even recognize themselves in the mirror! Luckily my nurse said that the Dextamethasone (steroid) that I have to take can counteract this effect. And guess what- 6 days later and no weight gain!!!!

Side note: I actually just looked up this drug and now found another worrisome side effect that I'm pissed I wasn't told about: apparently patients on this drug can lose their finger and toe nails. WTF?!?! In young people the incidence is about 25% so maybe I will be lucky. It sounds so painful! People suggest bringing in ice bags during infusion to put on your fingers to prevent it- I definitely will have to remember this. I can't believe they didn't tell me!!!!...

After making the change we talked about how the chemo was working. I didn't have the last results from my CA-125, but she has my lowest as being 8. So far so good. My counts were still low all-around (hemoglobin, white and red cells, platelets) but not too low to delay treatment or require extensive safety measures. Then we talked about the next step. Her next step was to do a hysterectomy using the fancy DaVinci laparoscopy machine- meaning that it would be an outpatient surgery with only a few small incisions. I immediately told her no: I intended to keep my uterus as long as possible. This wasn't advised, and she commented that the surgery would be beneficial in that it would offer a second look into my pelvis to possibly detect any changes not picked up by the scan. While this would be normally be a great strategy, I said that I simply wanted my uterus and so she accepted that. She then started talking about radiation. Radiation was not usually the standard of care for ovarian cancer. However, she had consulted with several other oncologists who agreed that it would be an appropriate step to take considering the aggressiveness of my cancer and it's quick spread. I know I have said that I do not want radiation, but I heard her out. I just didn't get the point- if she took out all the tumors, then what would the radiation be directed at? A lot of perfectly-working normal tissue and maybe a small few rogue clear cells. She clarified that although she took out some lymph nodes, she had left others that at the time showed no evidence of cancer. So the radiation, in fact, would be directed at the those nodes that she had left. I told her that what I was worried about was my uterus- as well as how the radiation would effect the normal functioning of my other organs. She said that some of the side effects of radiation after surgery is that it can destroy some parts of the bowel that may have been cut. Thus, the worse case scenario is that I would need more surgery and removal of parts of the bowel. It also can damage the outer tissue of the uterus making it unable to function properly. There were more targeted kinds of radiation that might spare more normal tissue, but she emphasized that it was important to not "box" yourself in, and be sure to get the immediate area around the lymph nodes or else it would be ineffective. All in all, her solution was to refer me to a radiation therapist at the end of my chemo so that I could discuss my options. Without radiation she couldn't be assured that I would be completely cured- with it she said I had much better odds.

And what is cure? Apparently it is being free of growth after 3 yrs. Shorter than what I thought. I think I have changed my mind and may give radiation a chance. Depends completely on what the radiation therapist has to say.

So after this lengthy discussion I had one more thing that I had been waiting to bring up since day one. Why was there no option to save my eggs? People have always asked me that and it was even an option on Grey's Anatomy! There was definitely no option pre-surgery when I signed away my ovaries. And so what did she say? Well, first of all she had no thought in her mind that I had cancer in the first place and that she would have to take the other ovary. It was a last minute decision and so I reluctantly agreed that it was a good choice considering how removal may significantly increase my chances of cure. Plus, chemotherapy would damage the other ovary anyways. Secondly, I don't know the validity of this, but apparently only a few hospitals in the country actually do egg harvesting. I would think that the University would be one of these but who knows. I was kind of confused on what she said after this, but eggs have to be prepared and matured before they can be frozen- usually with fertility drugs to increase the amounts of viable eggs that are released. The procedure is also much more effective if they are fertilized first- not really an option for me at this time.

I found an article on the issue if you want to check it out:
http://www.newsday.com/news/specials/ny-enovary02,0,6004064.story

So I guess I can deal with that. Ashley- I'm still gonna hit you up for your eggs in a few years so be prepared!!!! Take care of those babies! ;)

Well it's Saturday afternoon now and I am beginning to feel myself again. Fatigue this week was it's usual. I slept a lot, but got in a day of yoga and a day at the gym. At yoga, I wussed out and wore a head wrap after debating whether to go bald or not. It's HOT yoga and so I got totally sweaty and my cap eventually fell off during a move. I knew of course that this would lead to SOMEONE saying SOMETHING after class. So as expected, a quiet Asian girl approached me and stumbled through the question of "what happened? why are you bald?" I told her it was chemo and then said something that I didn't expect: that she has just finished 8 rounds herself five months ago. She then said that she had noticed my port (how could you not?) and showed me her's (which of course was small and almost unnoticeable compared to my giant green-blue tinted third-nipple tumor) She said I was strong and she was impressed with how I could do yoga during my treatment. We both agreed that the mind relaxation was helpful. I didn't catch her name but I was glad that she was the one in the class who had brought it up. In any case, I left the studio with something else on my mind: why does she still have her port after 5 months? Do I really have to keep that damn thing in so long after my treatment? Argghhhhh I hate it i hate it i hate it.

Free Cremation!

2009-04-26T22:04:00.000-07:00

I got this awhile back and it's been on my fridge ever since. Apparently in addition to being 65 and eligible to be in the AARP (I get notices all the time), now I am getting junk mail for end-of-life services. Pretty morbid, eh? Just what a cancer patient needs for their self-esteem ;)

Now about me

2009-04-26T21:34:00.001-07:00

Oh so I forgot! While I was home my sister and I got matching tattoos! We researched forever what we wanted- we knew we wanted something that meant 'strength'. We eventually came across the Adinkra symbols of West Africa. These symbols originated from Ghana and were hand-painted onto hand-embroidered cloths that were used by royalty and spiritual leaders in ceremonies and rituals. We found one for strength and then at the last minute decided to get another one that symbolized love.

Strength: (looks like a turtle to me)

WAWA ABA "seed of the wawa tree"

symbol of hardiness, toughness and perseverance

The seed of the wawa tree is extremely hard. In Akan culture, it is a symbol of someone who is strong and tough. It inspires the individual to persevere through hardship. :

Love: (obviously the one that looks like the heart)

ODO NNYEW FIE KWAN
"Love never loses its way home"

symbol of the power of love

Anyways this was both of our first tattoos. It definitely hurt like getting an injection for 25 straight minutes. Not fun. (Of course, I will get another one anyways). I love the way it looks though and now it doesn't hurt at all. I did ask about getting my scar tattooed- one guy told me that I should wait 2 yrs! He said he did one after 6 months and it started to open again.

I think these tattoos have so much meaning after all the events this year. You definitely have to be strong to get through this. This has definitely been trying for all us, especially my sis and dad. And as for me, I have chemo tomorrow and I am just annoyed. Earlier today I was starting to plan my week and getting in sometime to study and work in the garden when I remembered the chemo. Dammit. Now I'm gonna feel crappy and waste a week of my life. Ugh. It's just annoying. As soon as I feel fully recovered I have to get infused again. Tomorrow morning I am also talk to my doctor- the first time in 3 months. We are going to talk about the plan. I have no idea what that plan may be, but I guess it all depends on whether the chemo is still working. I want her to order a full-body CT scan. I would just like to know that it hasn't spread anywhere else. For some peace of mind. . .

Surgery Bill

2009-04-26T19:42:00.000-07:00

Just got my surgery bill and I'm kind of surprised it's not more:

Daily service: 3 days x $2,382= $7,146
Pharmacy: $2,126
Pathology Lab: $3,295 (which I'm pretty sure I was already charged for this)
OR Services: $9,551
Recovery Room: $1,220
+ Other (Med-surg supplies, labs, drugs)

= $27,289

Mom update

2009-04-26T18:42:00.000-07:00

Oops I haven't written in awhile! What's new....

Last week I flew home to Illinois again to see my mom now that she is awake and talking. She was moved to the rehab unit for a few weeks. When I first visited it was a complete turn-around from when I visited last! She was able to sit up in bed and pretty much was just like my old mom. I really couldn't tell a difference in how she spoke or in her personality, for which I was totally relieved. Throughout the week I saw her get better. She was eating a little more at each meal so they finally took out her gastric tube. She said this hurt quite a bit and it definitely made it hard for her to get in and out of bed. At first she had a catheter in, but then in the middle of my visit they took it out for a trial- only to find that she couldn't control her urge to go. This freaked her out because she thought she was going to have to have another surgery or have a catheter indefinitely. The docs reassured her that this was somewhat normal, and that her bladder could be retrained. Well the next day when I came in she had already retrained it!

She has lost a lot of muscle tone and it is still hard for her to stand or walk for long periods of time. She still has to use her walker although she is able to go a little further each time. She spends at least 5 hours a day doing therapy, which includes exercises with therabands to work her muscles, cognition exercises to work on areas such as memory and computation, and speech therapy. I didn't get to see her in therapy, but she showed me her daily log in which she had to write what she did that day, who visited, what she ate, etc. Her hands shake a lot so she also has a little ball of pink silly putty that she uses to build dexterity in her fingers. My dad and I were playing with the putty a bit- we all were cracking up because I guess my dad had wet hands from using an alcohol swab and so when he was kneading it his both of his hands ended up entirely pink!

My mom had plenty of visitors besides us, and her room was filled with flowers and cards. The nurses were also really good to her, although I always joked that they probably drew straws to see who had to have her as a patient that day. She is a total pain in the ass! She used the call button for everything- and when she couldn't find it she would just yell out the nurses name until they came. I spend a good portion of my visit trying to either convince her not to call the nurse or actually physically holding the call button away from her. I was trying to keep her independent, which was frustrating because she wanted help with everything. If she wanted to move up an inch in bed she would call (she was entirely capable at this point of doing so herself), or if she had a totally medically-irrelevant question. She even called just to introduce the nurse to me. We had to keep telling her- "MOM the nurse has other patients!" Ridiculous. She knew she was a pain in the ass to. I bet you those nurses argued every morning who would have April...

She gets to go home on Monday- tomorrow actually! I think she is going to have some nursing help at home, because she isn't entirely independent and is at risk for falls. My dad working on getting her disability because she won't be working for a very long time. She is just going to be too fatigued. Plus, she has been officially been diagnosed with Post-traumatic stress disorder a result of the whole incident. She has anxiety and panic attacks almost every night. I asked her whether she could hear me and what it was like when she was sedated on the ventilator, and she said it was all one big nightmare. She could hear us, and we just became part of her awful dream. Basically, she doesn't want to talk about any of it, especially any mention of the events in the ICU. It doesn't help that she had to be cooped up in a sterile, white hospital room for a month as well. She did tell me a little about the morning she went to the hospital. Apparently when she was driving to work, several people had reported to the police that she was swerving in the lanes like she was inebriated. She had even jumped a few curbs. She made it to work somehow, only to find that the cops had been chasing her, and had come into her store to track her down! I guess that's when a co-worker drove her to the hospital. Crazy...

The rest of the time I was home I hung out with my sister and her boyfriend. It was my sis's b-day and so it was nice to celebrate with her even though she was super stressed from studying. I always seem to come home right before an organic chemistry test... It was OK though because I had studying to do myself. I also got to see my old high-school buddy in Chicago while I was home. I haven't really gone out in the city so that was fun, especially after a Cubs game! All in all, it was a nice relaxing week and I was so happy to be able fly home knowing that my mom was alright

there's some humor in cancer

2009-04-16T22:43:00.000-07:00

The bills are starting to come in

2009-04-16T22:23:00.000-07:00

I thought I would post this since I was telling my classmates...

These are some of the costs of my treatments and tests:

Bloodwork:

Comprehensive Metabolic Panel: $125

PTT: $45

MG and Phosphorus Assay: $54 each

Automated Hemogram: $95

Thromboplastin Time: $67

CA-125: $106

Procedures and Tests:

Office consultation with specialist: $320

Pelvic Ultrasound: $270

Chest X-Ray: $216

CT Scan of chest and pelvis with contrast: $1637 each

Port Placement: $6345

Anesthesia for 3-hr Exploratory Abdominal Surgery: $2052

Pathology Consult in Surgery: $285

Pathology biopsy: $136 ea. (I had at least 8)

1 round of chemotherapy: $3591 (listed as pharmacy, IV therapy, Med-surg supplies, chemotherapy-IV, drugs/detail code)

No worries... My insurance covers most of it and the Cancer Center is supposed to pick up the rest. Thank you nursing school for making me get health insurance!

feeling better

2009-04-16T22:07:00.000-07:00

This weeks been much better- I bought a new bed so I am no longer on an air mattress with a hole (I had to blow it up every night and before I took a nap). I think that contributed a lot to my fatigue because now I feel a lot more energetic and rested. I also picked up hot yoga again. I thought it would kick my ass, but I didn't have to sit out more than once which is about the usual. It felt great to stretch and release. In any case, I feel good now. The tinglies are also a little better

I finally talked to my mom as well. My dad has had her cell phone all along, and so she was unaware of my calls even if she wanted to talk to me (and I just realized today that she had a hospital phone- duh). I made my dad give her the phone and we talked for a bit. She said she can't stand being in the hospital, complains about everything and is basically the worse patient ever (and knows it). She doesn't want to do her physical therapy and apparently she asks for the nurse or the doctor every chance she gets. I told my dad that I bet the nurses fight over who has to take her. She has had tons of visitors which is great. I asked her about being sedated in the ICU and if she could remember anything about the experience. She said that she didn't want to talk about it because it upset her. Basically she said the whole experience has made her rethink her life and now she wants to be healthier. She also said that when I come visit next week that I can help her with her therapy. That will be interesting... I will kick her butt into shape! I'm used to physically conditioning little gymnasts so I'm going to have to be a little easier on her... Not that she'll listen to me anyways ;)

Quote and Tattoo Ideas

2009-04-13T18:59:00.000-07:00

Not sure if I already posted this but I love this quote:

‘Life isn’t about how to survive the storm, but how to dance in the rain.’

I'm going to make it a tattoo. Not sure what writing to use....

I also need to find something to tattoo over my scar. Send me your ideas!!!!
So far, here's what I've got:
- zipper
-barrel of monkeys
-footprints to a manhole in the navel
- buttons

I want to incorporate my belly ring or at least the navel into the design

Running out of titles....

2009-04-13T18:43:00.001-07:00

Not much to say lately. I'm trying really hard to get back into the swing of school but it's getting hard. My mom is doing ok I think and has just been moved to the rehab floor where she has to do exercises for 3 hrs a day. She's stubborn and doesn't want to cooperate, so I think it's going to be a long 3 weeks. I still can't get her on the phone, and it's starting to bother me...

I'm feeling great for the first time in a week. I can definitely feel the cumulative effects of the chemo. My fingers are still numb and it makes me pretty clumsy. The other day I was at the store and dropped two containers of soup from my basket when they started to roll out. When I grabbed them I couldn't really feel the plastic and so they dropped to the floor making a huge mess. It was totally embarrassing because I had a full basket and I dropped one container 1 foot from the aisle, and then again at the register. What a mess....

I also am still having balance issues and kinda lose balance when I stand up from sitting. I had a pretty bad day Friday as well. For once I had left my happy positive place and was feeling really down. I don't know if chemo is supposed to mess with your serotonin, but i feel it has been. I feel fine now, but Friday was the first day in a long while that I was depressed and frustrated with all this shit. Chemo is wiping me out with the fatigue and I'm only HALFWAY done. Granted the whole mom-thing has increased the stress 1000% and making it worse. Plus I'm going out of my mind with boredom at home. It takes tons of energy to get out (although once I'm out doing something with friends I'm fine) and so I'm not motivated to leave. Seriously, people need to drag me out of the house! This is a call for help- I'm totally willing to hang out if someone wants to do something during the day!!! Anything!!! (Plus if anyone wants to be my study partner or gym buddy, I need some major motivation to work on school stuff and workout!

I'm back in my happy place- mainly due to extra sleep. I really wish I had clinicals at least one day a week to combat the boredom. I feel out of touch with school with class only once a week. I guess I could be working on my thesis/project but that's a slow process... Right now I am planning for the summer and trying to fill up every weekend with some kind of festival or camping. Seattle summers are good for that. I just need something to look forward to!

I am going home to visit my mom again this Saturday. I'm totally homesick from all this family crap. I do feel like I am closer to my family more than ever though. Closer to a lot of people. I never really thought I had a huge support network in Seattle and elsewhere, but I guess I do- and when I really need it. It's nice because I am talking to people that I haven't seen in ages. And I don't really care anymore that it's because of the cancer. Anything is better than nothing. I'm so thankful for everyone- I don't think I could do this without such supportive people around me!

I'm 1/2 Way Done!

2009-04-09T14:52:00.000-07:00

It turns out that my mom is doing ok today and is talking a lot more than ever. She has been moved to a regular unit and is mostly complaining about the boredom. She still has a feeding tube which runs at night, and then she eats normal food during the day. I guess so far she has some bites of sandwich! In any case, friends and family have said that she doesn't seem as bad as I was thinking, and that there are minimal cognitive deficits so far. YAY!!!

I've got the tingles in my fingertips- all of them this time. Yesterday the bone pain began again- same old places- under my knee cap and along my shins. I'm not nauseous as long as I take my steroid and Compazine, which are making me pretty tired. I've been trying to get chores and errands done today and yesterday but I keep doing stupid things like forgetting to bring my money to get gas... I'm just all-around spacey.

I've got two new pictures- one of my new red and black wig! I love it and people comment on it where ever I go! Thanks to Ashley for that one!

Also I just wanted to say thanks for all the support I've been getting. I really really appreciate it. Last week I got the cutest package from my old gymnasts in St Louis. I taught these girls gymnastics for 2 years before moving here, and I still try to see them whenever I visit the area. Now some of them are 12 (rather than 6&7) and one is even graduating high school! Anyways, they sent me a box with a cute little Build-A-Bear bunny, homemade cookies, and a book of homemade cards. Even better, they made a video of themselves doing gymnastics and telling me a little about what they are doing now. Oh it was so cute that I cried when I read and watched the cards and video! Thanks so much girls- I love it and I MISS YOU ALL!!!

So here's a pic I snapped of the front of the big card:

Chemo #3

2009-04-06T22:02:00.000-07:00

I almost forgot last week that I was scheduled for chemo today. It wasn't a big deal when I went through it either. At 9am I got a ride, got my blood test and a line started from my port, and waited to be called to infusion room #19. For some reason I always get the room right across from the nurses station, which is always sooooo loud. It's never any good gossip. It's not that I want to listen in on their HIPAA violations- I just want to hear about some interesting patient or see how the doctor's and nurse interact with each other. Instead most of them were concerned with their new electronic medical records system- which of course my nurse had no experience with. I guess she had been sick last week when they implemented the system and now had only used it for 2 days. She still figured most of it out but had to ask a bunch of people.

When I got there I waited for about 30 min for the blood results to come back. I made sure this time that I was well above the cutoff- although the nurse told me that it is generally safe to get the chemo if the count is 99 like last time. She said that it was probably better to concentrate on killing the cancer and taking a Neulasta shot, rather than missing a week because of a slightly low neutrophil count. I got a printout of all the labs and my liver function was normal as well as my chemistry. My white blood cells were low but at 150 which was fine for chemo. My hematocrit and hemoglobin, and protein were also low- which is probably why everyone has been commenting on how pale I was (I'm normally pale, live in sunniless Seattle, and have been wearing my dark-colored wigs so what do they expect!) What was interesting, was that I had gotten a blood test on Friday- which showed my white and red blood cells to be significantly higher. I was starting to think 'what the hell did I do to myself this weekend?' but then the onco-nurse came in and reassured me that this was most-likely due to the Neulasta shot wearing off (usually at the end of 3 weeks). She also said that from now on I had orders to get the Neulasta while I was doing chemo. I was confused because I was never told of this order so I had to clear everything up. I like this place and these people but I'm still frustrated with the communication process- all I want to know is my lab results and when I have appointments but that keeps taking so long...

I spent the whole day there until 5pm just eating oreos and watching TV/napping. I argued to not get the high Benadryl dose and won, but they gave me this other antihistamine which gave me a headache. I talked to the chaplain again, but mostly about my mom and how I was dealing with it. Which of course wasn't all that well. I just want to be in Illinois right now... I also questioned the nurse about the whole having to shave my legs thing, and she said that the reason that I still have leg hair is because that hair just doesn't grow that rapidly. That's what I thought. So weird though- it's like the hair on your head is racing to reach your toes.. at least mine is- I swear my hair always grew 3x as fast as everyone else's! So I still have to shave my legs, but I have been noticing thinning of my arm hair and my eyebrows. I REALLY want my eyebrows! Sucks cause my eyes are so itchy that I have to touch them all the time! Come on follicles- don't make me a freak!

Well that's all for now... Check out this shirt!

Mom update

2009-04-06T21:11:00.001-07:00

I wanted to post yesterday but of course our internet was out when I got home from the weekend- I did a random trip to Orcas Island with my friend Melanie for an evening. It was great to get away from all the anxiety I was having. We stayed in a cute little cabin off the beach and spent the time exploring the island culture. I went crabbing for the first time and caught 20 crabs! I felt retarded because I wasn't catching any for the first 30min and Melanie had so many! That's what I get for growing up in Illinois. I remember telling my dad later that I knew nothing about water life and his response was: well you know a lot about corn! Well dad, who cares?!!! It's not like there are millions of activities to do in a corn field except get lost...

Anyways, I was still getting updates about my mom and it was like a roller coaster ride because of how things changed from one minute to the next. I'll try to report the best I can for her friends/my family that's reading this, but obviously I'm not there so this is all by word of mouth. My mom needs her own blog... Especially since I definitely get a different picture of her condition from what my dad says versus my sister. Can't wait to see what she has to say when she can read this

She got an MRI which revealed that she had a hemorrhagic stroke (meaning that it was caused by bleeding/broken vessels vs. a dislodged clot from elsewhere in her body) on both sides of her brain- a moderate-sized one in the Wernicke area (language-processing center) and a cluster of bleeding on the other side that was affecting her right side/hand. I'm not sure who initially said it was hemorrhagic, but I suppose it was the neurologist who has been MIA for the past few days. I would attribute the bleeding to the heparin- it's an unfortunate consequence from trying to find the perfect dose- it's prescribed to prevent clots and embolytic strokes but can end up leading to uncontrolled bleeding... Anyways this news freaked me out and I've been pretty anxious ever since. My sister and dad both said that she seems confused a lot. When they showed her the picture collage I made, she couldn't seem to be able to read the "Get Well" words and seemed confused and unable to identify our pictures. I guess she is talking a bit, and mainly keeps saying how bored she is. Don't blame her one bit considering she's been in the ICU for over two weeks! Apparently she was not swallowing well but everyone was unsure of the cause- it could either be from the vent tube or a neurological defect. They are now considering doing a G-tube that feeds her through a tube implanted directly into her stomach. She did pass her dysphagia/swallowing test so they may wait off on that for the next few days. My dad also said that now she can move her right side pretty well and is trying to get out of bed.

My dad thinks that my mom is really depressed because she hasn't taken her meds since admission and is probably going through withdrawal- thus why she is so spacey and out of it all the time. I don't know what to think way over here in Seattle. I just have to wait because all the signs of neuro defects could be caused by depression, drug withdrawal, fatigue, or the fact that she has hasn't eaten properly in awhile. And not being able to speak well makes it even harder to assess. My dad first said that the nurses hadn't noticed any cognitive dysfunction. Now the doctor thinks she has expressive aphasia, because she seems to have difficulty forming words (really this form of aphasia is a motor deficit caused by damage to Broca's area rather than Wernicke). Either way, I wish I could get good news that stayed good.... I'm still mad at my dad because the other day his cell died and he called me from my mom's phone. That was a BIG letdown ;(

Well, that's all that's been going on - nothing about me is even an issue anymore. That's why I'm saving my discussion about my chemo today for the next post....

CA-125

2009-04-03T14:44:00.000-07:00

I finally got my results back for my CA-125 and it was 11 on my last draw. Before that it was 42, and pre-surgery it was 400 something. So it's definitely going down which is great news!

Wig ridiculousness

2009-04-02T19:17:00.001-07:00

Accessing the site

2009-04-02T19:16:00.001-07:00

Hey for everyone accessing my blog:

I've heard complaints that people can't be added as a follower- let me know if you can't so I can figure out what's wrong. I know that I have more than 8 followers!!!

Spring Break unexcitement

2009-03-31T00:32:00.000-07:00

I haven't written in awhile because I am have been back in Urbana, Illinois for my spring break. The weeks before finals I had a random idea to spend 5 days in Hawaii. Tickets were cheap, but I had never been and had no idea where to look for a place. I put it off and by the beginning of finals week they had gone way up. I would have gone but it was stressful just finding a place to stay- I had no idea what island to go to and what hotels/hostels were good. But then my mom got sick so I changed my plans and tried my hardest to get a flight last Monday. No luck- I tried to get charity fares but there was nothing for a week. What's the point of that?!? Damn spring break. I finally forked out 600 bucks to fly out on Wednesday. I missed my first flight which made me miss the last flight to Urbana and so I had to take the bus home. Ugh. Sooo boring. But I finally made it home. My sis was up with her bf and he had shaved his head for me! My sis was pissed but her looked good. Anyways, it was nice to see my sis and all but I was completely focused on my mom...

So last week (morning of finals of course) my mom went to the ER with a really bad cough and some confusion/dizziness. Apparently on the way to work she was swerving a bit and actually got pulled over for it. She went to work anyways and her co-workers got her to go to the ER. Turns out she has bilobar pneumonia. The next day she was on a ventilator and had an SatO2 of 85% or something. I was freaking out and so that's why I tried to fly home early. I had no idea how bad it was until I got to the hospital. She looked AWFUL. She was heavily sedated and on high flow oxygen and two antibiotics. Her hands and feet were badly swollen, as well as her neck. What was really awful was seeing her tongue- it was hard from hanging out of her mouth for days. I cried when I saw her and had to leave the hospital after about 20 minutes.

The next day I saw her and she had developed a fungal infection and some sores on her legs. The doctor said she was getting worse and I asked the nurse to see her xray. Of course the first one said she couldn't show me because of HIPAA. The next one was like no big deal and showed us. I couldn't believe it- I remember seeing xrays in clinical and my patients had just little spots in their lobes. My mom had at least 70% of BOTH lungs full of crap. The whole xray was white.
It was hard for my dad and I not be the annoying family member trying to control her care. The docs couldn't culture anything from lungs or blood. We both got online and researched what could be going on and came up with a hypothesis that she could have legionella. I guess it doesn't always culture out unless you do a special test. This was plausible because she's a florist and spends a lot of time in the cooler which could house Legionella. Anyways, both of us had a lot of questions and probably annoyed the crap out of the doctor. I think they deserved it though- I guess her first doctor rotated with another one every week. As soon as the new one came on her ordered a bronchoscopy to check out her lungs. I guess they were full of pus and he was able to flush out a lot of it. Anyways I was pissed because the first doctor could have done this. She also didn't have compression boots on which bothered me. They were giving her heparin though so that was why. Should you have both? I guess I was most concerned that when she did get through this that she was at risk for clots. This totally bothered me...I was hoping that she would be off the vent some time while I was home but he said that she would probably be on the vent for 4-6wks! So upsetting because all I wanted to do was talk to her. At least have her know I was there.

The rest of the time at home was ok- I hung out with my sister and her boyfriend mostly. The house was pretty weird without my mom around. Pretty depressing. My sister's coworkers wouldn't cover for her so she had to work a little while I was home. She also had an orgo test the day I had my flight home so she had to study as well. Definitely a horrible spring break for the both of us. We did have some fun though- we all had a night trying on the wigs. My dad looked hilarious! My best friend from high school, Eleza, also came to visit from Chicago for a night. We went out to check out all the new bars. Of course we ran into someone from high school.. weird cause she didn't recognize me with the wig- something which I always forget. Feels the same to me, ya know!

Well miraculously my mom started getting better on Monday. Her lungs were clearing and the doctor predicted that she might be off her vent Tuesday or Wednesday. They also were reducing her sedation. All I wanted was for her to be off the damn thing before I left. Well she wasn't. That's probably what bothers me the most. I went to see her yesterday morning and she actually opened her eyes! I made her a picture collage and so I got to show her that. She most likely won't remember me being there which is sad, but at least I got to see her getting better. She looked better- the swelling had gone down and her lungs were only diminished in the bases which was awesome! She didn't respond much while I was there except she shook her head at the nurses when they asked her if she had any pain. It was nice to see her eyes open and know that she at least somewhat knew I was there.

So I got home yesterday with little sleep and after a 2 hours delayed flight. (Never fly through Ohare in the winter or spring). I went straight to bed and slept for almost 24hrs (with the help of some ambien). When I awoke there were at least 8 missed calls from my sis and dad- apparently my mom had a mini-stroke. Exactly what I was worried about the whole time. I guess they did their neuro check and she had reduced grip strength in her right hand, as well as an inability to raise her right foot. She also was tracking her eyes to the right. They did a CT scan which showed a small stroke in the left hemisphere in the Wernicke area. There was also a lot of inflammation. The Wernicke area (I remember this from psych classes) is the part of the brain that processes speech. So the docs and all of us were really worried that she may have problems understanding language. They were confused, however, because usually strokes in one side of the brain produce deficiencies in the opposite side. They ordered a MRI scan and as of right now the neuro doc hasn't told us the results... My dad and sister did say that earlier she had some left sided weakness as well which had resolved a little. She also could track her eyes to the left. So she sounds like she's doing better. My sister went in and was talking to her and she responded by trying to speak a little . She also was moving around a lot and could dangle her legs. It's unclear whether she has language deficits because she won't be able to speak for a week or so because her vocal cords are pretty swollen and inflamed from the tube. I remember how that feels- I was on a vent during my 3 hours surgery and the next day I was hoarse and it hurt pretty bad to swallow and speak. I wonder what a week and a 1/2 feels like it... My sister thinks my mom will recover just fine after seeing her this morning. I love the positivity- DAD YOU SHOULD be more positive! ;) My mom got better fast and so I think she will recover functioning soon. The only thing she will have to worry about is the fatigue and I have no pointers about that except maybe stealing some Adderral...

So that's my current update. I flew home to see my mom and she will be soooooo pissed that she missed me. I guess I will have to fly her out! I totally want to sue the ER doctor for not doing a chest xray. They could have caught this so much sooner and maybe she wouldn't have even had to be admitted to the ICU. Fuck that. Doctors can be so cocky. Cover your ass. The Urgent Care clinic I worked at sent anyone with a bad cough to get an xray even before they saw the doctor!
You would think that if someone is dizzy and losing cognition that it would alert them to the fact that her cough is serious! Make me want to be a better practitioner. I think that's what I have learned the most from all of this and from my own experience being the patient. Get advice and consult with other practitioners because it's so easy to make mistakes and only think inside the box. And make sure you are available. At least I am getting something from all of this.

I think my luck is on the upside. Finally. It seems to come in threes and this whole mom thing completes the series. (I'm counting our rental house going under foreclosure as number one). The last bout of bad luck started at the same time in 2007- Within 3 months I got kicked out of school, kicked out of my house, and let go from my job... I should totally play the lottery!

Oh and speaking of good luck- when I got home I had a pile of medical bills (which finally came).The first letter was from Basic Health insurance saying that they had looked over my MRI request again and approved it! It was denied previously because Country Doctor didn't send them all the required information. This had started a world of worry because that was actually the ONLY thing that I had asked my primary care doctor to refer me too- Everything else I self-referred, including the surgery which they COULD deny if they were assholes because it wasn't pre-approved. Well I opened at least 3 more bills that showed that my insurance had been billed for all the specialty services and tests that I had received. I guess the lifetime limit on the insurance was only $1500! I'm guessing without insurance this whole thing may be $100,000 so that was awesome too. Finally, the best news was that the SCCA had approved my application for charity care. They determined that they would take on 100% of my responsibility towards my bill on June 25th. I guess that means anything that I didn't pay by then. How awesome is that! I don't know exactly what that means- like will they pay for stuff now- but that is still awesome news! I'm hoping that it will pay for the surgery with the 20% coinsurance because the UW is linked to the clinic. Otherwise that bill is going to be enormous!

Well I am starting classes tomorrow again and so I gotta study. I feel pretty good right now. Monday is treatment # 3. It's not for sure because if my counts are low than I will have to delay it. I missed my blood test this past Monday and so I'm not sure what they are. I will probably get another tomorrow. I'm supposed to talk with the doctor after the 3rd treatment so that will be good. She wants me to do radiation and another surgery to remove my uterus and I have decided not to do both. I guess I don't understand the point of irradiating my whole abdomen when they don't' even know if the cancer is still there. How do you target a few little clear cells? I probably will get another CT scan though which will tell me. They only did my abdomen and pelvis last time which I think is stupid because it could be anywhere considering it traveled through the bloodstream. I'm going to demand it. Not that I really want to know. I haven't asked about my CA-125 results as I don't really want to know those either. I will get them on Monday regardless.

Well wish me luck. I will write more now that I'm back on the computer for school. Break was sure nice without my cellphone on me and very little email checking! So nice to escape technology sometimes... (although TV was a dominant factor at home).

Amber

new school plan

2009-03-23T15:34:00.000-07:00

So I have pretty much felt like crap since Monday. Studying for finals was awful. I was so tired and had so much information to retain and it just made me crabby and more miserable. I ended up going to my final on 3 hrs of sleep which was awful but at least I passed!

I had a meeting with my profs after the final and turns out they had designed an alternate program for me so that I could finish. Awesome cause during the past couple of weeks I have been wondering how I would be able to do it- I was already so behind in clinical hours and I was just able to go for 1/2 days. I really don't think I would have been able to handle another quarter- especially as the effects of chemo were accumulating... And because it is an intense, consecutive program- I would have to take a year off instead of just a quarter. So fortunately, I have a new plan: next quarter I just do my two lecture courses and not clinical. Then I can relax a little more during the hardest parts of chemo- and avoid all the germs swimming around the clinics. Instead of doing my final practicum this summer like my classmates, I'm going to restart clinicals as if it were spring quarter. Then I can do my final practicum and graduate at the end of the fall. Sounds good to me! I'm going to miss going to clinical but I know that I'm going to feel a lot better in the meantime. I don't think I could have taken another year off....

post-chemo ughs

2009-03-19T00:41:00.000-07:00

Ok now I'm feeling crappy. I'm not really nauseous but my stomach feels off. My ring finger on my right hand is numb. My underside of my right knee cap aches and both sides of my neck are sore from the port. I've been popping Percocets which helps a little, but I can't sleep on my favorite side. And of course, I'm fatigued and have no appetite. Except for my roommates' choco-peanut cookies and my power smoothies. Somehow I have to study for finals but I just want to lay around. Damn you cancer for your horrible timing...

Pic of my Powerport, i.e. third nipple

2009-03-17T22:04:00.001-07:00

I took these right after the surgery and forgot to add them- the first one you can kind of see the vein (which i can palpate) sticking out. It's not a bruised now but I still have the steri-strips on

PowerPorts

2009-03-17T21:53:00.000-07:00

The PowerPort* Implantable Port is a cylinder with a hollow space inside that is sealed by a soft top. It connects to a small, flexible tube called a catheter. When a special needle is put into the soft top of the PowerPort* device, it creates "access" to your bloodstream, meaning that medications and fluids can be given and blood samples withdrawn.

Several distinctive features that can be seen and felt help to identify the special design of the PowerPort* device for power-injected CECT scans. These features include a unique triangle shape and a unique triangular arrangement of three bumps called Palpation Points on the soft top of the port.

For power-injected CECT scans, the PowerPort* device is used with a needle designed especially for power injection called the PowerLoc* Safety Winged Infusion Set.