Oh January!

It has been over a month since my last post, and I could just write “ditto” and be done! My Opdivo infusions are still being withheld due to an elevated liver function, I’m still exercising, and the new Melanoma Support Group is still on track for its first meeting February 6th. I’ll fill in a little bit (or a lot!).

The highest number for my liver function was 362 on November 16th. It dropped weekly until December 12th when it peaked again at 295, a lower peak. Then it dropped weekly until it peaked again on January 18th at 197, an even lower peak. Last Thursday, January 23rd, it dropped to 82. Normal is between 0 and 33. I’ll have it checked again this Tuesday – bets on a peak or lower? Of course my prednisone dose is continually adjusted based on the number – back up to 60mg/per day when the number peaks, and lower dosages in between the peaks. Right now, since the number dropped, I’m at 20mg/day. The goal is 10mg/day with a “normal” liver function to make me eligible for infusion in February.

Christmas happened since my last post and it was wonderful! Anytime we have our family together, I’m happy. My taste buds weren’t working, but I prepped, baked and cooked anyway. I had so many cookies in our home! The prednisone kept me moving! We went to the library with the grandkids to see the train display, and got to spend quality time enjoying them. It was fun watching how much they enjoy playing with each other. We even got to be part of a new puppy adoption which was the sweetest thing ever! Welcome to Libby, our new grandpuppy golden doodle!

We also took a short trip to Topsail and Raleigh to celebrate a grandchild’s 8th birthday. We stopped in Salisbury on the way down to visit with Steve and Em, and enjoyed our new favorite Italian restaurant only minutes from their home. The beach is a magical place of healing, except when a stomach virus goes through your son’s family! Our granddaughter was sick just before the trip, and then our son got sick that Sunday, our grandson Sunday night, and our daughter-in-law on the way home Monday. We were still able to enjoy each other and the puppy, the sand, ocean sounds, shelling, seeing dolphins,  finishing a puzzle, reading, and watching the Eagles win! Bill and I made it home Wednesday before we both got a mild case over the next two days.

I’ve kept up with my exercises except for two weeks when I felt too sick – sinus infection (prescribed Augmentin but given generic – Amoxicillin) and stomach virus. I had to call to have the prescription extended after 10 days because I still had no sense of taste, my teeth still hurt, and I still had ear pain and sinus pressure. The extra 4 days ran out, and it’s still not gone, but better. I think doing a sinus wash nightly is helping a lot.

I met with the exercise specialist, and she suggested that I just do one exercise per day instead of trying to do the entire set. What a difference that made! My mindset changed from “I can’t do this because I don’t feel well enough/I’m too tired/I have too much pain” to “I can do this one easy thing.” After doing that “one easy thing,” I was often able to do one more, and then one more. Now I’m doing several exercises each day and working back up to the full set every other day. The one thing I haven’t been doing is walking – first it was too cold outside, the sidewalks were snowy/icy, and then too much pain. I guess I’ll have to join the mall walkers!

The exercise specialist also encouraged me to try a Tegaderm dressing on the deep scab that remains on my right leg wound. This clear dressing basically seals the wound and softens the scab. She used to play softball and always had painful brush burns that healed by using this dressing on them. The scab is quite painful and is taking forever to heal, especially with the prednisone. So I started Tegaderm, showering and changing the dressing when it becomes “goopy.” I use the handheld shower attachment and really spray the heck out of the scab. Then I blot it dry with a 4×4 and apply a new dressing. It’s working!! The pain has lessened and the scab is slowly softening and reducing in size bit by bit. March 10th will be a year since the surgery that created the wound! What a journey!

I was surprised by a lot of right hip pain this past Tuesday and Wednesday. I blamed it on over doing it on Monday and causing extra lymphedema. Knowing I shouldn’t take Tylenol because of my elevated liver function, I called my oncologist’s nurse to learn if there was anything I could take to get some pain relief. She said that Tylenol will mask the pain, but Aleve or ibuprofen will actually lessen the inflammation causing the pain. I’m taking two Aleve a day and it has helped tremendously!

I’ve started back into crafting. Being creative helps my mood. I was actually able to do some cross-stitch on a plastic canvas. It’s not as neat as I used to be able to do with two hands, but it’s not horrible. I saw a collage another patient completed using the greeting cards she had received, so I got out my bags of cards and cut out inspirational sayings, birds, flowers, dragonflies, sunshine, and hand-written messages of love, encouragement and support. Next I plan to arrange them on a canvas so I can look at it and feel the collective love! I’ve also painted more rocks and just collected even more to start painting this week. After the threat of snow is gone, I’ll place them around the walkway at the Cancer Institute. I also have a small Christmas tree I want to make with my daughter using my mother-in-law’s jewelry. She loved Christmas so I hope this will become a fitting keepsake.

I have my 3-month scans scheduled for February 9th, and infusion (hopefully!) for February 13th. As usual, there’s a lot of hope focused on the results! Decisions will be made on potential radiation at that time.

In the meantime, I’ve set up a new physical therapy consult with our neighbor, and I’m going to try acupuncture for the first time this week. Something is bound to help! Onward!!