I can only describe the last three months of my life as “too much.” Too much time spent in the hospital, too much time spent waiting for scans and then even more time waiting for the results. I came back from my amazing trip in Italy to stable scan results. Well, the relief brought on by the scan results dissipated rather quickly. A few days after the scan, I found out I needed to have another leg surgery because the nail inserted during the previous surgery broke. Did not know that could happen but alas, it did. I was faced with a version of the first surgery was when which was an easier recovery but could end us back in the same place with a broken nail at some point. The second option presented was a partial hip replacement that is somehow more complicated than a total hip replacement (add that to the list of things I will be taking up with the medical community at some point). Even thought the partial hip replacement would mean some permanent challenges in terms of my mobility, it seemed like the safer and more stable option. So, on October 14, I went under the knife yet again and prayed for the best result. And the surgery went well. They were getting ready to discharge me in just a few days when I went in for a scan of my abdomen. The scan was to see if there was any reason I often experienced UTI symptoms. That scan showed some suspicious spots on my liver, which after a MRI, a biopsy, and lots of tears, confirmed I had new disease in the liver. Why this wasn’t picked up in my September scan seems to be unknown, or at least, I have not received a satisfactory explanation at this point. The liver biopsy extended my hospital stay for about a week and included five days of fasting only to be told ‘oh not today, maybe tomorrow.’ I was finally discharged and sent to a rehab facility, which was a horrid experience that I have just about blocked out. Maybe some day I will write it about.
I had about a week at my mom’s house before returning to MSK for a brief one-night stay. The plan was to ablate the liver spots and then send me back on my way. The plan went well on the liver spots but I woke up from the procedure with just about paralysis of my arms. I could not lift them, I could not grab anything, my arms and hands and fingers would simply not do what my brain wanted them to do. I was told to sleep and all would most likely be fine the following day. Well, suffice it to say, they were not fine the next day. Or the day after that. It has been over five weeks and my right arm is still experiencing numbness and weakness. The hardest part of the whole experience was not the pain, or the fact that I had to be fed, or couldn’t hold my phone to send a text, but that no one was listening to me. Various teams came into see me and hypothesize how “we” got here but no one could give me a definite time frame or explanation. I asked for massage, for acupuncture, for physical therapy, for anything to help relieve the tension I could feel in my shoulders. I waited over 36 hours for a brain MRI to see if the pain was caused by more cancer in the brain. That was fun. Thankfully, the MRI came back negative but that did not seem to push the doctors or the team at MSK to do much more for me. I know there is a lot of talk about women, particularly black women or other women of color, not being heard by their providers. I have to say, this was one of the first times where I felt no one was listening to me. No one was helping me. No one was coming up with a plan to get my arms working again. I can’t believe it has been so long and I’m still feeling this pain.
I am still using one crutch, luckily on the left side, which is the stronger of my two sides. I am typing this with discomfort in my right hand. I just started a new chemo regime that will hopefully work for a long time. I also met with a cardiologist and all this stress is starting to take a toll on my ticker. So that’s pretty fun. This is a little haphazard of a post but I wanted to start the process of getting some of the past few months.