And the fun continues!

I hope everyone is off to a great new year! I sure am or was, I am not too sure yet! Well I guess I still am but the past week has been challenging emotionally, lots of tears were shed (my poor chiro picked up all the pieces and did a pretty good job at putting them back together!). I have been doing really really well since my back surgery. I had forgotten what it’s like to live without pain and once you are pain free, it is so easy to take it for granted and even forget what it is like to have pain. Some days I still pinch myself to remind myself that I can stand up without pain, that I can sit without a tennis ball under my knee and one in my back, that I don’t have that nagging feeling down my leg and that I can sleep so much better and in any position I want! I was really happy that 2015 ended, it was a pretty rough year medically that started and ended with a surgery and was filled with months of pain. At the same time, I think we really made the best out of it and we were still able to enjoy a little ski trip, spending time with my parents and in-laws who unconditionally and lovingly helped us throughout the year, until my father got ill and my mother-in-law had to deal with a cancer of her own. So yes, 2015 has been challenging but it also was a year of extreme growth for me. I am not ready to say that cancer was a gift but it has brought me many gifts, mainly in the way that I see and experience life at large.

I had my last Folfox and avastin infusion in November and since then I have been getting a weekly infusion that is considered “maintenance”. I opted to get the weekly infusions so as to not have the 46 hour take home infusion pump. There are pros and cons to each, at least when I had the pump, I had a whole week completely free of cancer but the pump was a big pain, just thinking about the constant rumbling sound and buzzing of it makes me shiver. As I said, I have been feeling really good. The holidays were the best that I have had in the past 3 years. I felt giddy most of the time, just enjoying the season and the fact that it was the last year that we had a “believer” in the house. January started on a really good note as well and I was very optimistic about staying “stable” on this regimen for a while. However, last Monday I had my infusion and as usual, I checked my CEA (cancer marker) the next day online. This marker has always been a good indicator of activity in the past. My doctor had once told me not to worry as long as it remained under 10 but in my case, we learned that as soon as it starts moving up, it means that things are reactivating. Before Christmas, it had continued to go down despite not being on the big chemo and I was thrilled. Last Tuesday, I optimistically and naively looked at my online chart to check the number, expecting it to still be under 2 but it made a 2.5 points jump… for me it is a big jump and I completely lost it! My GI oncologist had predicted it would go up but I was still hopeful that it wouldn’t right away… given my history with this marker, I decided to get right on it! I am so grateful for my GI oncologist’s assistant. I emailed her right away and she forwarded my email to my doctor who was out of town. He still responded to my email and after about 18 emails back and forth, I was set! We decided to move my scan up to see what was going on.

I probably could have waited until we checked my marker again again but that would have been another 2 weeks. Since we will be leaving on that following weekend for our trip to Quebec City and knowing my self – leaving knowing that something might be brewing but not knowing what, would have been pure torture and would have prevented me from enjoying my trip fully. If there is something I need to know, I would rather know now and devise a plan of action. Even if I don’t start until we come back at least in my head it will be “classified”. The unknown is so unsettling and one thing I for sure still am grieving, is the loss of innocence, just being able to live life without feeling that this Sword of Damocles is hanging right above my head. Waking up every morning never wondering how much longer I will be here, planning for the future, and not being worried about which way my health will go in the next days, weeks, and months. This is still hard to accept.

The main reason why I reacted so strongly and so emotionally is that after my first Folfox treatment, I remained “stable” for 8 months just on maintenance and so I did have high expectations. It’s a fine line between having hope and having expectations. I know some people don’t believe in hope but I do. I am very hopeful that immunotherapy is going to have a major breakthrough soon. I am hopeful that I can be stable until it happens but I guess “expecting it” is what makes you fall from high when things don’t happen the way you “expect” them. I was feeling so well and I was so hopeful/expecting to be well for a few months that I even applied for a program for cancer patients to volunteer in India. There were amazingly a few spots open for a trip in March and I thought it would be a perfect timing. I really thought I had a few months ahead of me to live life more normally. Given the uncertainty, I had to back out and this was a big blow… I will keep the hope alive that I might be able to do this trip in the future.

So to bring you all up to speed, I was able to get a last minute CT scan done on Friday. My amazing interventional radiologist met with me on a Saturday (yes you read that right!) to go over the results, I feel so lucky and so grateful to have him on my team. Basically he said the lungs were stable and he could see some improvement in my liver! So I left feeling like it was great news but couldn’t completely shake off the idea that there might something else going on somewhere else that he had not looked at. I drove to Gainesville today, a total of 6 hours to meet with my other amazing doc, thankfully he had an opening today! He had not been able to see the images but I shared what my IR had said. I apologized for maybe having pulled the trigger too early but told him that I would prefer to be silly rather than sorry! He totally agreed with me, I guess he knows me enough by now and knows my case (sometimes I think better than my local guy) and said that it was the right thing to do as my marker has always been spot on. He was happy to hear about the lungs and liver but like me worried that there might be something else. The number one recommendation (which is what my IR had also said) is to get a PET scan to see where there is activity – we think there are spots on the liver “misbehaving” as my oncologist would say. If it is only a few spots and if they are well located we will zap them with a radiofrequency ablation (RFA). If there is something else somewhere else we will start a new chemo regimen. I got a message from him when I got home that he had been able to look at the images and that he had looked everywhere else and couldn’t see anything funky so this is another good news! At least I know there is no new spots that could be seen on a CT. So the plan is to get this PET scan this week or next week and have it reviewed by my IR so he can decide if he can zap the hot spots. We also discussed clinical trials but he still wants me to hold off a little while longer.  A few new studies just recently opened up but he described it as a “feeding frenzy” with many pharm companies competing to find the right combo for colorectal cancer with my type of mutations. He wants to start seeing results before I jump in – and he said I still had time… so this is it folks – the continual ups and downs, as I said before it’s the constant roller coaster ride! I’ll update when I have more results and a definite plan. I am so glad to have amazing doctors invested in me and all of you supporting me through this journey! The picture is of my GI oncologist at Shands, I really don’t know what I would do without him (and his assistant Patty!!!) Thanks Dr. G!!!

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4 thoughts on “And the fun continues!

  1. I admire you! What an amazing care team you have BUILT/found yourself! I wish you a good time back home without pain:)) and hopefully with as little worry as possible. xoxoxo

  2. I always anticipate the follow up more positive news after a devastating blow. I am so relieved to read that things don’t appear as bad as you initially may have thought. I always wonder about the margin of error with these tests. You assure me its “spot on” but I don’t believe it. It’s science….there has to be some error. Thank you for the specific details in this post. Including your feelings.

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