Dear Friends & Family,
Fall has arrived in Seattle and it makes me think of Thanksgiving for some reason. People tend to disproportionately reflect on what they are thankful for on/around Thanksgiving - must have something to do with the name of the holiday (duh). In my family, we usually go around the room before the traditional meal is devoured and tell each other what we are thankful for. The last few years my answer has been the same two fold response: 1) time 2) the friends and family who support me in my fight. These are both things we can take for granted in our daily grind. To me, time is commodity where the value is determined by the individual. Some think that they have a lot of time ("I can get to that tomorrow/next month/later/etc"). In my case, time has become very precious. When I was diagnosed in May 2008, I was given about a year. This was before they knew the exact variety of liver cancer I have. Ok, tick that up to 18 months. That was 30 months ago. I look at the "extra" time I have as a blessing and as some what "borrowed". In other words, I try to make the most of it. I would never be able to make the most of it without the friends and family I have supporting me - you guys really make "time" valuable. Hence the response the "what are you thankful for" question.
Medically, I am doing quite well. I have to catch you up on the past 2 scans. I had a scan about 3.5 months ago and it showed notable shrinkage with no new spreading or growth. By notable, I mean about a 10% reduction in the size of the main tumor, which is quite large for tumors. So a reduction of that scale is impressive, given my circumstances. The latest scan shows continued shrinkage, but not at the same rate as the previous scan. It also showed no spreading or growth of the other tumors. In both scans, not all of the tumors are shrinking at the same rate. You may ask why the same chemo is showing diminishing success over time when it's supposed to be more toxic after repeated, continuous sessions, and why aren't the tumors all responding at the same rate. It's because not all cancer cells are the same, even if they're the same disease. In other words there aren't homogenous cancer cells in my body. What makes cancer so nasty and hard to treat is the fact the cancer cells change their makeup ever so slightly when they divide, especially when they metastasize or spread, and therefore have different reactions to treatment courses. Since the scan have both shown positive results, I will continue on the same chemo cocktail of oxaliplatin (Eloxatin) and gemcitabine (gemzar). I was happy to continue with the same treatment course because I know how my body reacts to this chemo mix, and have become comfortable with the treatment schedule. I'm also able to bounce back pretty quickly after my Monday infusion. I'm typically back to full time work in the office on Wednesday, doing some work from home on Tuesday. Finally, I've been able to add some weight while on this treatment course. I'm back up to about 140 lbs now - still a bean pole but better than being less than 130 lbs (which I was not too long ago).
However, this combination of chemo meds is not absent of side effects, especially the oxaliplatin. Oxaliplatin, in addition to attacking cancer cells, also attacks the smaller nerves in the body. These are located in the ears and the tips of your fingers & toes, amongst other places. I am experiencing side effects, known as neuropathy, in all 3 places. I continue to have high pitched, constant ringing in my ears. It has not gotten worse over time, which is good. I have learned to tune out the ringing as much as I can and it does not interrupt my daily routine or ability to think/concentrate. The only problem I've noticed is that I have a harder time hearing people when there is background noise, like in a restaurant. I started out with cold sensitivity in my fingers. For example, if I pulled something out of the freezer with my hands, my finger tips would go numb and tingly after about 3 seconds of holding the cold item. Once I let go of the item, it took about 5 seconds for the tingling to go away. This has also not gotten worse over the course of treatment. It's a tiny hassle and is not something I'm not that worried about because it usually goes away after stopping the chemo. What has appeared recently is a mild loss of sensation in my fingers and toes. This is intermittent, not constant. If I stay on the treatment for too long, this loss of sensation can become constant and ultimately, permanent. I'm ok with a little loss, even if it's permanent, but if it progresses to much, it can impair walking, balance, and ability to feel pain - things that are pretty necessary to maintain "normal" daily life. I will continue with this treatment until the side effects get to the point that I need to stop. Sam and I will make that decision together. In all, I feel pretty lucky to be only dealing with these side effects. They can be much worse.
I anticipate the side effects of the current regimen catching up to me around the new year, but you never know. I may start up with accupuncture again to see if that will help slow the neuropathy. We'll see. My next scan will likely be in January. If I am forced to change treatments before then, I will post another entry. Until then, thank you for your continue prayers and support. Please know that in return I'm praying for you all as much as possible.
Stay well,
Rhone
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Hi Rhone. My name is Casey and I was referred to your blog by Dr. William Harris at SCCA. I'm working on reading all of your posts but in the meantime I wanted to say hello and introduce myself. Our stories are very different but we're connected by FHC. I'm currently cancer-free and plan on staying that way! It's my hope that I can continue to learn about this rare disease and connect with as many FHC folks as possible. I've posted my story on deliveracure.org (http://www.deliveracure.org/forum/msg/312.html). There's obviously much more to my story, but that'll give you an overview of who I am and how I came to be an FHC survivor. My biggest frustration has been informing my local oncologist about FHC and getting him on the same page for follow-ups as my surgeon at UWMC (and being frustrated that I have to educate my doctor). That's why I recently flew to Seattle to meet with Dr. Harris so that I could talk with an oncologist who has worked with this disease and is genuinely interested in the study of it. Since before my diagnosis (when my local doctors thought I had a benign tumor and said there was no reason to remove it), my husband and I (and our families) have proactively advocated for my health and better care. It's been scary at times but also empowering to know we're capable to make the right decisions about my health and our future.
ReplyDeleteThank you for sharing your story with this blog. You are inspirational! I will keep you and your family in my thoughts and send positive good health vibes your way. From what I've read thus far, you are a fighter! I hope this finds you feeling well and knowing you have made one more friend!
Casey
I'm praying for you Rhone, keep writing, people are reading...
ReplyDeleteHi Casey. Just saw your comment. In the event that you're still checking out my blog, I'd love to be able to respond to you in more detail. Please send me an email at rdarianr@gmail.com
ReplyDeleteThanks!
Rhone