As promised, I’m glad to share an update about how I’m doing, 48 days post-transplant. So far, so good!
Despite the occasional backslide for a day or two, I continue to feel stronger and better. Wednesday night we experienced strong thunderstorms; downed limbs and gobs of southern moss littered the yard. I donned my mask, grabbed the pick up tool from the garage and got to work. Yard work? Gardening? Not really. I call it active physical therapy. I’m careful. Wore long pants, rubber gloves and a hat. Hot, but it felt good to be productive.
Pattie and I took Finnegan for a long walk down to the beach. I labor some; mainly caused by the way my mask restricts oxygen flow, making it difficult to breath. But I’m getting used to it. If anyone notices my mask and bald dome, no one seems to care; my mask, floppy hat, slathered in sunscreen. Fortunately, most people are more focused on what they’re doing, or how they look. If we stop to talk with others–often as our dogs visit and get to know one another–I may explain why I’m wearing a mask. Most often they’re eyes start to glaze over after a minute or two; I’ve learned to keep my explanations brief.
I think it can be borderline rude. I would be fascinated–and want all the details–if I approached someone that looked like me on the beach. I rest my case. Many are more interested in themselves then others. Just the way it is in today’s busy, “it’s all about me” world; even when “relaxing” and walking along the beach.
Later in the day I ran errands, wearing the mask and hat whenever I left my vehicle. I recall the transplant team saying, “Stay away from grocery stores!” Not sure why. I do all of our grocery shopping. Always a mask.
I grilled out, dinner ready by the time Pattie got home. Turkey, veggie and salmon patties. Fresh corn on the cob, buttered fresh peppers and mushrooms, and of course the potatoes, loosely sliced, smothered in butter with just a touch of salt, wrapped in foil. Ymmm. The fact I felt good enough to gill after such an active day tells you a lot about how I’m doing.
Shortly after dinner clean up, I hit the wall. Still, I forced myself to exercise my legs, using suggestions from Melanie House, my physical therapist from Iowa City. I added lunges, using ten pound dumbbells, then did leg extensions and curls (for my hamstrings) on equipment in our exercise room, located at front end of our family room. Nice view of the pool and back garden. We have a small TV in the corner, facing the tread mill.
Even with a pool and our own exercise room, Pattie still gets away to the local YMCA after work to swim laps that take more than eight or nine strokes end to end like at home; to get out and wind down from her stressful job as the office manager at our local dialysis clinic.
I woke up feeling good today. Surprising, considering I took thalidomide, 20 mg dex, an Ativan and Benadryl last night before bed. My body seems to take it all in stride. My legs are a bit stiff this morning, but I’m feeling good. My stomach is torn up, a result from back to back 20 mg dex days. 28 days into recovery I started on 100 mg thalidomide daily, adding 20 mg dex for four days at the start of each three week cycle. It hit me hard at first. A real setback.
Peripheral neuropathy (PN) jumped to alarming levels after two weeks on thalidomide–inspiring my three part series on ways to help minimize PN symptoms. I should realize by now how many of you endure the same uncomfortable PN side effects I do, some much worse. Yet I’m always surprised to hear from so many of you; my email box began filling up as soon as I posted the first of three installments.
Alarmed, I emailed Dr. Tricot. He recommended going to a five days on and two days off thalidomide cycle. It has seemed to help slow the PN down. It’s still worse than it was in my hands before I started thal–I can barely write at all now–and totally numbing the bottom of my feet. It’s no longer climbing up above my elbows and knees, so that’s good.
On a busy day like yesterday, I rarely think about my PN. It helps I was coming off my two days off, starting thal/dex to begin this next cycle the night before.
As I often do, I buried the lead. During my transplant I experienced a lot of pain at each of the sites that showed up as “hot” on my PET scan in late June. My upper back, base of my skull and ribs screamed out and burned. I had stingers running up from the base of my head and shooting through my forehead. I was so sick anyway it was just another miserable side effect.
Fortunately, the stinging pain quickly subsided. I embraced it; visualizing it was the chemotherapy zapping the cancer cells.
As I engrafted and prepared to head home, all the pain was gone. After over eight years–experiencing dozens of new bone lesions–I know my body pretty darn well. I can feel most every new lesion. Sometimes the pain gets so bad I’ve had to have one or more radiated; I believe I’ve had it done five different times.
Remember, my bone marrow is completely myeloma free. The cancer cells clump or cluster tightly in specific spots, forming lesions and plasmacytomas, most often in my bones but once in a while free floating in the muscle.
I had been ecstatic; no pain from new lesions since I’d returned home. A great sign and a clear indication that the modified transplant had worked!
I’m afraid the party’s over. Distinct and chronic pain–the type I recognize originating in a hot spot–has emerged from a large, damaged area located between my shoulder blades. It is only getting worse. One of the ribs on my right side is hurting again, too.
10 days until I fly back up to Iowa City for another PET, brain MRI and BMB. We’ll have a clearer picture of what’s going soon after. Honestly, I never expected to have achieved CR. But with so little pain for so long, I was starting to day dream about it. Now I’m expecting the procedure helped, but there will still be active myeloma hanging around.
The most important result has to do with the large lesion in my skull at the base of my neck in the occipital lobe. Fear is if it continues to grow it will put pressure on my brain stem. No one will say what that means, or what to do about it if it hasn’t responded to the transplant and subsequent maintenance. It all hinges on the scans. All I know is if it doesn’t stop getting larger, it can’t be good. Radiation? Maybe. Start radiating the head and nausea and vertigo are bound to result. I wouldn’t be looking forward to that.
But I’m not going to worry about it now. We won’t know anything for almost two weeks. Two precious weeks. Today I’m busy organizing receipts to send in to my insurance company, Cigna. I have a $10,000 transplant travel benefit that reimburses me for travel expenses to and from Iowa city, and while I’m there. Logging and attaching each receipt (and I always make copies just in case something gets lost in the mail) is tedious work. I hate it! But it’s worth it. I have another $3000 coming back.
So time to quit procrastinating. Gabapentin, (2-300 mg capsules in the am, noon and again PM), along with low dose oxycodone, 3 gm of curcumen and Vitamin B and magnesium supplements are helping me get past my PN and focus on the task at hand. I haven’t started using amino acid supplements yet; that will be the next step. Lots of alpha lipoic acid (ALA).
And I haven’t forgotten about the prayers. So many of you are praying and pulling for me. I feel it! I can never stay down long. I have a brisk wind at my back, helping me move forward. I thank you all for that!
I’ll let you know if I make any changes in what I’m taking and why. In the meantime, keep those prayers and “atta boys!” coming my way. It really helps.
Feel good and keep smiling! Pat