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 :/

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

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!

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 :)

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!!!!