December 1, 2015
It's a celebration!
There it is. I made it 5 years cancer free. Things have been tough, really tough, but at least I have my health. I am grateful that I made the choice to make the most out of life and live it to it's fullest. Thank you everyone for reading and letting my share my story. I am hoping that this will be my last post :)
March 30, 2015
SSI Disability
I went to the neuropsychologist for testing and was diagnosed with Neurocognitive Disorder- Moderate. The whole process was fascinating, because I have studied cognitive psychology and recognized a lot of the concepts. I helped conduct reseach experiments while in school, and so it was interesting to actually be the one taking the tests!
My results and comments were as follows:
- Attention: my encoding score was low- encoding being the range of new information that someone can take in at one time.
- Executive Functions. This refers to skills that are important for goal- directed behavior and problem solving. This includes skills in planning, the ability to use organized search strategies, to monitor performance and correct errors. Also the ability to resist the impulse to respond to irrelevant information when completing a task. The tests showed that I'm generally disorganized in daily life in terms of problem solving- due to being unable to plan ahead and stop and think about problems at hand. This is a gross understatement. I simply cannot and do not plan anything.
- Learning and Memory. I have no problems encoding verbal information, but have trouble with retrieval. I had very delayed recal abilities, even when given clues of previous information. I will never be on Jeopardy.
- Language/ Verbal abilities. I have low performance in the ability to quickly and accurately retrieve and apply language, colors and numbers, and overall fluency.
- Visual/ Spatial and Sensory Motor Functioning. This number was in the low range, suggesting that when given multiple visual information, I have difficulty distinguishing similar shapes.
Overall, I have encoding issues, mild processing issues, and executive function difficulties. This suggests that I struggle with processing information the first time I hear it. This can influence comprehension, especially with boring tasks. Learning is a problem, because comprehending new information is more time consuming. I also struggle with resisting impulses and considering consequences before I act. Moreover, planning is a problem because I consistently underestimate the time needed to complete a task and it's level of difficulty. I may have good ideas but be unable to express them adequately. I also have problems keeping information in active/ working memory- something that is needed to sustain attention. This causes forgetfulness and becoming overwhelmed by large amounts of information. Finally, I have problems with initiation, i.e. getting started. While intentions are good, this puts me at risk for being labeled lazy and unmotivated.
* apparently my Perceptual Reasoning skills were superior, meaning that I am excellent at solving non verbal problems and working with visual information such as designs and pictures. At least i have some good results!
Everything the neuropsychologist found reconfirmed what I already knew- I have a hard time with reasoning skills and learning new concepts. These are two things which are essential to being an effective and safe medical provider. I will need more time to process results and make diagnostic decisions. This is almost impossible to do with the current standard of 15-minute appointments. No one wants to hire someone who is so slow at their job. Plus, medical information is always changing, and so it will become increasingly difficult to keep abreast of all that new information.
With these results, I beleive that I have a good shot at getting disability. I told my doc exactly why I was doing the study and she wrote my results summary to reflect how I am unable to do the job that I went to school for due to chemotherapy. Now I just need to start applying- a daunting task that requires some skill in "initiation"
On another note- my latest CT was negative!
My results and comments were as follows:
- Attention: my encoding score was low- encoding being the range of new information that someone can take in at one time.
- Executive Functions. This refers to skills that are important for goal- directed behavior and problem solving. This includes skills in planning, the ability to use organized search strategies, to monitor performance and correct errors. Also the ability to resist the impulse to respond to irrelevant information when completing a task. The tests showed that I'm generally disorganized in daily life in terms of problem solving- due to being unable to plan ahead and stop and think about problems at hand. This is a gross understatement. I simply cannot and do not plan anything.
- Learning and Memory. I have no problems encoding verbal information, but have trouble with retrieval. I had very delayed recal abilities, even when given clues of previous information. I will never be on Jeopardy.
- Language/ Verbal abilities. I have low performance in the ability to quickly and accurately retrieve and apply language, colors and numbers, and overall fluency.
- Visual/ Spatial and Sensory Motor Functioning. This number was in the low range, suggesting that when given multiple visual information, I have difficulty distinguishing similar shapes.
Overall, I have encoding issues, mild processing issues, and executive function difficulties. This suggests that I struggle with processing information the first time I hear it. This can influence comprehension, especially with boring tasks. Learning is a problem, because comprehending new information is more time consuming. I also struggle with resisting impulses and considering consequences before I act. Moreover, planning is a problem because I consistently underestimate the time needed to complete a task and it's level of difficulty. I may have good ideas but be unable to express them adequately. I also have problems keeping information in active/ working memory- something that is needed to sustain attention. This causes forgetfulness and becoming overwhelmed by large amounts of information. Finally, I have problems with initiation, i.e. getting started. While intentions are good, this puts me at risk for being labeled lazy and unmotivated.
* apparently my Perceptual Reasoning skills were superior, meaning that I am excellent at solving non verbal problems and working with visual information such as designs and pictures. At least i have some good results!
Everything the neuropsychologist found reconfirmed what I already knew- I have a hard time with reasoning skills and learning new concepts. These are two things which are essential to being an effective and safe medical provider. I will need more time to process results and make diagnostic decisions. This is almost impossible to do with the current standard of 15-minute appointments. No one wants to hire someone who is so slow at their job. Plus, medical information is always changing, and so it will become increasingly difficult to keep abreast of all that new information.
With these results, I beleive that I have a good shot at getting disability. I told my doc exactly why I was doing the study and she wrote my results summary to reflect how I am unable to do the job that I went to school for due to chemotherapy. Now I just need to start applying- a daunting task that requires some skill in "initiation"
On another note- my latest CT was negative!
August 13, 2014
Chemobrain
I found an interesting Blog about chemobrain that I wanted to share. It has been 4 years since I had standard chemotherapy, and I still am feeling the effects. I have a horrible time with word retrieval, processing new information, and reading maps. I also have a hard time computing simple math problems and just focusing on anything in general. My ADD and attention span had gotten much worse, making it hard to get anything done. Basically every mental task takes twice as long and I get really frustrated with my broken brain. I don't feel like I can be a safe nurse practitioner anymore. Not only do I have to relearn everything I forgot, but it is also really hard to acquire new information- which is problematic as clinicians are constantly having to adapt to new practice standards and guidelines. I find myself more interested in positions that only require physical skills- jobs where I use my hands and not my slow brain. So after all that schooling, the positions I have been pursuing of late are in the fields I was in before graduate school- bartending and gymnastics. I think that this is because I feel comfortable using skills I have already developed, rather than having to constantly struggle with learning new tasks. It's a waste, but sometimes it just takes too much mental energy to try and learn something new. It takes a tremendous amount of effort to concentrate on the task at hand, which is then followed by the struggle to comprehend the information and put it into memory. I feel dumb a lot of the time, and embarrassed by the length of time it takes for me to figure something out that other people find so simple. This is especially hard for me now, because I have acquired new friends that only know the slow me and not the intelligent and knowledgeable person I once was.
This month I meet with a neuropsychologist who can hopefully point me in the right direction. Most of the reason I wanted to meet with her was to get cognitive testing and see if I qualify for disability. My symptoms negatively affect most aspects of my life, but I don't know if the federal government will actually recognize chemobrain as a disability. I ultimately would like to discharge my student loans. Plus I want some validation of my worries that I am too damaged to work in medicine. I need some sort of explanation or excuse to why I never found an ARNP job. I feel worthless and stupid talking about it, and when people ask me about my career or what I went to school for, I don't even mention nursing school. Last weekend at a music festival a girl asked me what I did, and i actually forgot that I worked as a nurse in biometrics. I don't get called in to work many shifts, so I guess that's understandable. However, I surprised myself that I only answered that I was a bartender. It's like the whole nursing part of my life never existed. I am back in 2006, bartending and coaching gymnastics- only with $100,000+ in student loans.
Well that's my rambling for the time- being. I also got a CT scan last week and still haven't heard the results. It was only a CT because obamacare doesn't find PET scans very necessary for cancer follow up :/
July 19, 2014
RIP Adam Oliver
I was following my friend Adam's blog since I met him at the cancer center. I noticed that he hadn't updated his blog in a few months. The last post was about his clinical trial had been failing... Two days ago I was browsing Facebook and came across his page- the top post was an "I will miss you," along with a picture. This was back in May. ..
I didn't know him all that well, but I often thought about him and checks his blog every few weeks or so to see how he was doing. He was actually the one who gave me the idea to start this blog. He was a really nice guy. I remember talking to him about how his cancer had also returned- his reaction had been nothing but anger and frustration. I went to see him in the hospital during one of his treatments, and it was long and had made him so sick. I see why he was angry. The cancer had stolen his way of life- he loved ultimate frisbee and the cancer was in his leg so he couldn't run. Cancer made every part of his life a struggle, even in the end. I am grateful that my treatments weren't so bad, and that I am currently in remission. I'm just so sad for all the people in my life that I knew who died. It's still a horrible struggle to mend my life after the cancer, but at least I am healthy enough to try.
Rest in peace Adam. You will be missed.
A link to his obituary is below:
http://www.legacy.com/obituaries/tricityherald/obituary.aspx?pid=171191977
A link to his obituary is below:
http://www.legacy.com/obituaries/tricityherald/obituary.aspx?pid=171191977
November 6, 2013
The Dream
Awhile ago I had a weird dream. I had this itch and a sharp pain coming from the left side of my groin. I don't remember any other details, except that these sensations turned out to be originating from a huge bloody spider bite on the area.
Waking up a little frazzled, out of curiosity or instinct I put my hand on the area to feel the imaginary bite. Instead I found an enlarged lymph node. I was a little taken back, especially after I felt several more nodes along the inguinal chain. What the hell? Why had I not noticed these before? There were none I could feel on the right side, but there had been metastases in those nodes and some had been removed. Did this mean that my cancer is back and this time spread to the left lymph nodes? Shit! Now what?!?
All these thoughts swirled around in my head, but I kept focusing on one thing- that eerie dream. Was this just a coincidence, or was that dream a sign to lead me to discover these lumps? Fate may have guided my diagnosis before- I believe that I was meant to go to nursing school to be conveniently surrounded by medical professionals, AND to be studying women's reproductive health at the time of my diagnosis. Without that knowledge and community support, I don't know if I would have recognized cancer's red flags, nor investigated the cause of my symptoms. I'm also pretty sure that I would have put off going to the doctor for a long time.
Luckily, I had that appointment with my new oncologist within the next few days. I didn't mention the dream, but I quickly pointed out the nodes during my visit. The doc told me his hesitations about routine PET scans, but agreed that an exception should be made to check out these lumps. I didn't want my family to worry, so I waited for the results of the scan before I wrote in this blog or told anyone about the dream or my concerns about recurrence.
Thankfully, my PET scan was normal, and the lymph nodes were unremarkable. Yay! No more cancer. In fact, I am officially in remission. It's been 3 years since my last recurrence. Doc says to come back in 4 months for a check up. This may have been my last PET scan for awhile. Thank god, a day without carbs is hell!
Waking up a little frazzled, out of curiosity or instinct I put my hand on the area to feel the imaginary bite. Instead I found an enlarged lymph node. I was a little taken back, especially after I felt several more nodes along the inguinal chain. What the hell? Why had I not noticed these before? There were none I could feel on the right side, but there had been metastases in those nodes and some had been removed. Did this mean that my cancer is back and this time spread to the left lymph nodes? Shit! Now what?!?
All these thoughts swirled around in my head, but I kept focusing on one thing- that eerie dream. Was this just a coincidence, or was that dream a sign to lead me to discover these lumps? Fate may have guided my diagnosis before- I believe that I was meant to go to nursing school to be conveniently surrounded by medical professionals, AND to be studying women's reproductive health at the time of my diagnosis. Without that knowledge and community support, I don't know if I would have recognized cancer's red flags, nor investigated the cause of my symptoms. I'm also pretty sure that I would have put off going to the doctor for a long time.
Luckily, I had that appointment with my new oncologist within the next few days. I didn't mention the dream, but I quickly pointed out the nodes during my visit. The doc told me his hesitations about routine PET scans, but agreed that an exception should be made to check out these lumps. I didn't want my family to worry, so I waited for the results of the scan before I wrote in this blog or told anyone about the dream or my concerns about recurrence.
Thankfully, my PET scan was normal, and the lymph nodes were unremarkable. Yay! No more cancer. In fact, I am officially in remission. It's been 3 years since my last recurrence. Doc says to come back in 4 months for a check up. This may have been my last PET scan for awhile. Thank god, a day without carbs is hell!
October 11, 2013
My New Onc Doc
Yesterday I had my first visit with my new doctor. He was a likeable enough, but I didn't like a few things he told me. He said that Dr. Rivkin did things a little bit different- something which was evident from the first time I met him. First of all, he doesn't order routine PET scans. He quoted research that found that they didn't improve survival in the long run. That could be true, but I do think that the results can determine that treatment plan. If a scan located an isolated tumor within my uterus, wouldn't the better treatment be surgery to remove the tumor, rather than start a new round of generalized chemotherapy? Why cause unnecessary damage to the rest of my body? I also think that it's important to have peace of mind knowing that I had a clean scan. In any case, he ordered one...this time.
When I mentioned the PET, he also asked how I paid for the last ones. I told him that my insurance paid initially, and charity care covered the rest. By questioning my finances, does this mean that he will possibly withhold expensive treatments in the future? On my very first visit, Dr. Rivkin told me that money would never be a reason to forgo needed treatments. I definitely need to advocate for myself if this becomes an issue.
Finally, he questioned Dr. Rivkin's use of Avastin. He said that using that drug isn't normally done. I told him that other chemo regimen didn't work, and that I switched doctors because I didn't want to restart a cycle with a similar drug. At the first appointment Dr. Rivkin was pushing for me to start Avastin. This doctor didn't seem convinced, which is a bit concerning. Avastin is a legitimate treatment option for ovarian cancer- it just isn't indicated or recommended by the FDA for my type of cancer. It seems like this doctor's decision-making is only based on statistics and FDA standards of care. The recommended treatments work in theory, but not all cases are the same. My cancer has behaved differently in every way, and so the treatment standards no longer apply. With a recurrence it's time to bring out the big guns, regardless of whether they are cost effective or result in only a small reduction in mortality. I want someone who will fight for me and find me the most promising treatments out there. If he won't then I'm going to find someone who will.
I left my appointment clearly missing Dr. Rivkin. I believe that it was his patience and dedication towards my case that perhaps saved my life. I hope he's enjoying his retirement, because he sure earned it :)
When I mentioned the PET, he also asked how I paid for the last ones. I told him that my insurance paid initially, and charity care covered the rest. By questioning my finances, does this mean that he will possibly withhold expensive treatments in the future? On my very first visit, Dr. Rivkin told me that money would never be a reason to forgo needed treatments. I definitely need to advocate for myself if this becomes an issue.
Finally, he questioned Dr. Rivkin's use of Avastin. He said that using that drug isn't normally done. I told him that other chemo regimen didn't work, and that I switched doctors because I didn't want to restart a cycle with a similar drug. At the first appointment Dr. Rivkin was pushing for me to start Avastin. This doctor didn't seem convinced, which is a bit concerning. Avastin is a legitimate treatment option for ovarian cancer- it just isn't indicated or recommended by the FDA for my type of cancer. It seems like this doctor's decision-making is only based on statistics and FDA standards of care. The recommended treatments work in theory, but not all cases are the same. My cancer has behaved differently in every way, and so the treatment standards no longer apply. With a recurrence it's time to bring out the big guns, regardless of whether they are cost effective or result in only a small reduction in mortality. I want someone who will fight for me and find me the most promising treatments out there. If he won't then I'm going to find someone who will.
I left my appointment clearly missing Dr. Rivkin. I believe that it was his patience and dedication towards my case that perhaps saved my life. I hope he's enjoying his retirement, because he sure earned it :)
September 22, 2012
21 months cancer free!
That's it. I said it. Avastin is over and done, and now i'm just gonna go on living my life. 18months was the expected time it would return, but we beat it so far!!!!
May 18, 2012
18 months
It's been 18 months now and I'm still cancer free. I just had a PET today and it was totally normal. It's not quite remission but still awesome. Dr. Rivkin gave me a high five. I now only have 3 more Avastin treatments to get through. No side effects really, except that I was really tired the week after my last one.
April 24, 2012
March 6, 2012
15 months, 11 Avastin Treatments and Cancer Free
Ok guys we're going on 15 months now! My PET CT was clear again- except apparently I have gastric reflux and a sinus infection. Lovely. Things are going well all around- now I just need to get myself a high-paying job to pay back all these loans!
November 12, 2011
1 year and cancer free!
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
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
August 6, 2011
July 28, 2011
My summer on the physical/medical front
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:
That's it for this long post- I'll post an update on what's going on in the rest of my life soon!
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 :(
That's it for this long post- I'll post an update on what's going on in the rest of my life soon!
July 15, 2011
June 18, 2011
June 17, 2011
PET, Dr. Appointment and 2nd Avastin Tx
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 :)
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 :)
May 25, 2011
First week of Avastin
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 :)
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 :)
May 13, 2011
1st Avastin treatment
*** 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.
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
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!
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!
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