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
July 19, 2014
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.
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