Hello friends! I am embarrassed to see that my last post was in February. I have no excuses except maybe pandemic fatigue? General slacker attitude? Really, I just needed a break. I enjoyed my time off chemo through January of last year, but then those cancer cells got tricky again and I have been back to the James every two weeks for those wonderful, life saving drugs.
I am not going to lie, spring and summer were rough. I was not my usual bright and peppy self. You would NOT have wanted to hear from me. In April, my bilirubin numbers started to rise. For those of you who don’t have to deal with this on a daily basis, it meant my liver was not functioning properly. The bile ducts in your liver work to eliminate toxins from your body. One of my ducts was being squished by a tumor, so the toxins weren’t being flushed naturally. Fortunately, I know my body, and I let the doctors know right away. I became a bit jaundiced, but they were able to insert a tube through my belly and attach it to a drainage bag. I have progressed enough so that the tube no longer needs a bag, but it still sticks out of the middle of my torso and has to cleaned and flushed everyday. Needless to say, my bikini days are over! I am hoping that in the next few months, everything can be put back inside where it belongs because it is cramping my style!
Believe it or not, the bile drain was not the worst part of my summer. Somewhere along the way, I contracted a staph infection around the drain. It went undetected for about a month and a half and I was in major pain. I turned into an ogre during this time. No, seriously, I did. I was in pain, angry, and crying more often than not. I am glad my family loves me enough and put up with me. Of course, I am the only one who knows all the passwords so they don’t have much choice. So, after two hospital stays, the infection was found, I was pumped full of antibiotics, vitamins, and fluids, and I am back to my normal self. I have to take a moment to apologize publicly to my doctors and nurses during my stays at the James. I bullied them hourly about a plan and to tell me when the HELL I was going to get out of the hospital! Apparently, I am a terrible patient. Who knew?
During the whole bili tube crisis (since we didn’t have enough to deal with), Mark and I took some time to seek out second (and third…and fourth) surgical opinions. We traveled to City of Hope in LA, Sloan Kettering in NYC, and Ohio’s own Cleveland Clinic. We also contacted MD Anderson in Texas. Everyone EXCEPT Cleveland Clinic deemed me inoperable. I still may be, but I have met with a team of doctors at Cleveland Clinic to see if I could receive a living donor liver transplant. It is a fairly new procedure and not many places perform it. They have only started using it with cancer patients in the last few years. Essentially, a matched living donor gives you part of their liver, and it replaces the diseased liver. The liver is a pretty cool organ. Both parts of the liver will regenerate into a whole liver! Yay, science! At this point, my colon is cancer free (also amazing), but I have some shifty spots in my lungs that seem to come and go. The doctors do not want to do a transplant if you have any cancer other places outside the liver, because the immune suppressing drugs can cause that cancer to take off in your body. So…we wait…and have hope that the science will continue to develop. I imagine that is more than you ever wanted to know about my health, so thank you if you are still reading!
For now, I am feeling great. Chemo still sucks, but it appears to be keeping me stable and I have lots of energy these days. I am enjoying my daughter’s senior year and snuggling with my rambunctious goldies. My son comes over for dinner weekly. My husband treats me like a queen and is an excellent nurse. Not to be trite, but I really am blessed.
I love you all my friends! Smile even if you don’t feel like and keep living the party.