Wow...I can't believe it has been three months since my last update. I apologize to those of you who have been checking back for new updates. The last three months have been some of the hardest months of my journey to date. Dr Brown (oncologist) stopped my immunotherapy (Keytruda) as of January 10th. She said that we needed to make sure that the Keytruda wasn't causing all the swelling in my body.
My last post left off with me scheduled for another Nerve Conduction Velocity Test in my arms and hands. I wish I could say that we found out what was causing all the pain I was having but we didn't. The test did show that I have what appears to be bilateral carpal tunnel caused by swelling. It also showed a decrease in nerve function. By the time of the test I started to have some pretty severe swelling in my arms, hands and fingers. The swelling has gotten so bad that I can't close my hands into fists.
As we headed into February and March things are kind of a blur for me. I will give you an overall update on what I remember. I had lots of doctors appointments as I was referred to every kind of doctor out there trying to get to the bottom of what is going on with me. I've had so many blood and urine tests checking me for everything under the sun but all have come back in normal ranges. I also had an EKG which showed I have a strong heart. So what I do know as of now, my heart, liver and kidneys are all functioning well. My endocrinologist has also cleared my pituitary, adrenals and thyroid. So where does that leave me. Tired. Very, very tired. I started sleeping about 18 hours a day. My legs, ankles and feet were always swollen even with wearing compression socks. The bottoms of my feet still have neuropathy in them. My arms, hands and fingers seemed to swell a little bit more each day. Most nights I would wake up with what felt like someone was drilling hot pokers into my hands and fingers. This would last anywhere from 20 minutes to an hour. I would get a couple hours of sleep and it would start all over again. As the weeks went on this phenomenon started happening during the day as well. Sometimes the bones from my elbow to my wrist hurt. All of my fingers except for my little fingers have turned tingly and numb. I've started dropping things more and more since I can't feel my fingers. Using silverware started to hurt. It made my hands feel like someone was freezing them. I had to start using plastic silverware. This same thing happens while typing on the computer. This is why I haven't been updating my blog. It just hurts too much. Somewhere during all this I started to get depressed. My palliative doctor is trying to help me through all this. We have changed up my pain medications a few times and I am now on an antidepressant. I will see her again next week.
So where am I now? Dr Brown has ordered another Signatera blood test. I am awaiting the results of that test. This will show us how much cancer DNA I still have in my blood. I have a PET scan scheduled at the end of this month and an appointment with rheumatology at the end of May. My next appointment with Dr Brown is May 1st. I will see at that appointment if I will be going back on Keytruda. This will depend on the results of the Signatera and PET scan. As of today the swelling in my feet and ankles has gone down and stayed down for three days. I feel like maybe a little of the arm, hands and finger swelling has come down a bit too. I have no idea what is causing this change but I will take it. I am sleeping better with a new pain med so that is also helping to improve my mood. I am still tired a lot, though I am taking less naps during the day. I have developed a cough over the last couple weeks. Not sure if one of my new meds is causing it or not.
Prayer Requests:
- For a favorable outcome with the Signatera test and PET scan
- For an earlier appointment to see the rheumatologist
Pic: Noel and I after a nap!
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