When Life Gives You Lemons...

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

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...

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

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

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

So cool! I want!

Diagnosis & Anxiety

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

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

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

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

Possible New Drug for Platinum Resistant OC

Investigatory Drug for Platinum Resistant OC

Researchers Map The Way To Personalised Treatment For Ovarian Cancer

Researchers Map The Way To Personalised Treatment For Ovarian Cancer

New Drug Appears To Overcome Resistance In Ovarian Cancer

New Drug Appears To Overcome Resistance In Ovarian Cancer

Ovarian Cancer Drug Shows Promise With Move To Phase 3 Trial

Ovarian Cancer Drug Shows Promise With Move To Phase 3 Trial

Night and Day

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

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

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

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

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...

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

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

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

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

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

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

Chemo Brain

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

A year out

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

Study Shows That Testing CA-125 Looks Promising

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

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

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

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!

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

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

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

Evolution of Hair

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

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