I had a great week off from chemo last week! I went to see Sex in the City with a girlfriend of mine (LOVED IT!) and enjoyed a margarita with my Honey at the Rio on our anniversary! I made scarves, drove myself to ShrinkyDink, visited with friends and family…it was lovely. Saturday night we enjoyed a huge steak dinner at my dad’s house for Father’s Day and then had dinner at a nice chinese restaurant with the Kellers on Sunday night. Friday’s chemo knocked me on my booty though…the first dose of a new cycle always does. I slept during the treatment, all the way home, and all afternoon and into the evening, waking up only to eat and drag myself to bed. Saturday and Sunday during the daytime I spent rest on the couch with NO energy at all. And this week, the fun is over…I have to go to the clinic every day this week for Neupagen shots (to keep my white blood cells pumping) and then chemo again on Friday. Ugh. At least I’ve got rides arranged from various friends and family members which always proves to be fun visiting times!
Three of the past four chemo cycles have resulted in a severe acne breakout only on the right side of my face. (That fourth one I had clear skin b/c of my visit to the spa and the bog mud mask I indulged in whilst there!). Since I’ve been shaving my head though, I just discovered that the acne does not end where my face ends…rather, it continues on up and around the side of my scalp, too. It’s totally disgusting. It looks like I have a disease (which I do! HA!). Plus my scalp is still on the WHITE side while my face has a subtle tan to it. The white backdrop lightly covered with splotches of stubble and red explosions of acne makes for a damn good excuse to wear a scarf 24/7!
Actually, I only wear the scarf when I go out. Sure, I can be proud and think that ‘bald is beautiful’ (still working on believing that but loving that I don’t have to do my hair everyday!) but I detest the staring of the small children who don’t understand why I am a girl with no hair but my husband next to me is a boy with enough hair on his head for a small country. The staring is unbearable. Plus the scarves I’ve made, purchased or received as gifts are gorgeous and soft and fun to wear. I find myself selecting my daily outfits based on which scarf I want to wear that day. I promise I’ll get some pictures up of my scarves soon…I just did not feel much like anything this past weekend when we had time to play modeling.
As you may have noticed, every few weeks we have new decisions to make as far as my treatment goes: which chemo drugs to try next (like we know anything!), when to do a CT scan, whether or not to do chemoembolization again, etc. This past Friday, several new opportunities presented themselves to us and now we find ourselves in limbo again as to what to do about it. After talking to my onc in detail about it all, I had to draw up a diagram of steps to follow in order to help us make a decision. Here’s a summary of what’s new:
1) A friend of Frank’s has successfully cured himself of Hepatitis C with the help of a Liver Transplant Specialist at my hospital. This doctor, Dr. E we’ll call him for now, is helping this guy write a book about his success in order to help other people with the disease. In the meantime, they both heard my story from Frank and Dr. E met with my oncologist (Kane) and the head of surgery at UCH. Upon initially looking at my records and before meeting with the two other doctors, Dr. E didn’t think I would be a candidate for a liver transplant. Apparently, though, something transpired in that meeting that made him change his mind. Basically, as long as the cancer has not spread to any other place in my body, then I would be a candidate for transplantation from a live donor. However, there has always been some question as to the health of a couple of lymph nodes near my liver: they are swollen and look inflamed which could be a sign of malignancy or it could just be irritation from the nearby tumors. We won’t know without a biopsy and and PET scan (which is just a big CT scan from the base of the brain to the mid-thigh area). We haven’t done these tests on the lymph nodes yet b/c Kane says we’ve been treating the tumors systemically and we wouldn’t treat me any different if they were cancerous. So I guess there just wasn’t a need to know before now.
When we return from our travels in mid-July, I’ll have a PET and CT scan done. If they reveal questionable information, then we’ll go in either laproscopically or endoscopically to biopsy a sample from the lymph nodes. If they come back as cancerous, I won’t be a candidate for transplantation and we’ll skip on ahead to option number 2 below. If they aren’t cancerous, then I’ll meet with Everson and pursue the transplantation option further. S C A R Y! But as Honey always says, “don’t worry about it until we have something to worry about.” AKA: cross that bridge when/if we come to it.
2. Frank and Carolyn are friends with a couple in Hilton Head who have been affected by cancer. Not just any cancer, mind you. The wife has cholangiocarcinoma just like me! SMALL WORLD! Apparently, she’s had some success in killing her tumor (not shrinking or removing it) with radiation. I am in the process of swapping emails with her to learn more about her story. In the meantime, we are looking into trying some radiation in the foreseeable future. We may end up going back to MD Anderson in Houston b/c they have a proton radiation machine which is one of maybe three in the whole country. I’m not sure how it’s so special but I’ve got my Number One Researcher (Frank) investigating that for us. Yes, we could essentially do radiation and then a transplant later on if it comes to that. But we’re not making any decisions until we return from our vacation.
3. Chemoembolization is on hold now as we explore these other two options some more. I want to see a new image of my tumors. I’m not convinced that the previous procedure did anything productive to them. I’m willing to give it another chance but the side effects and recovery were terrible last time and may not be worth it if there are alternatives.
4. In the meantime, I am getting in touch with the Integrative Medicine department at UCH to explore complimentary (commonly referred to alternative, but for me it’s not a matter of “instead of…” it’s a matter of “along with…”) techniques such as acupuncture, nutrition/dietary changes, chinese herbs, massage therapy, etc. I’ve heard a lot of success stories associated with these types of treatments and I think I’ve reached a point where it can only HELP and not hurt my efforts.
