Here’s my long past due update: It’s going to cover multiple weeks, since I haven’t done an update since April 10. Just think of four shorter updates all rolled into one, unusually long one.
In the 1980’s there was a wooden roller coaster at Lagoon in Farmington, Utah called “The Wild Mouse”. They’ve torn it down now, but any of you who went to the park in those years may remember it. I hated it above all the rollercoasters at Lagoon because the roller coaster rattled along on that unstable wooden trellis over the camel humps, but mostly because the turns were so whiplash style sharp and abrupt.
This is what one writer wrote about it: “To this day, I still remember the fear. I was absolutely convinced that the car was going to jump off the tracks on the hair pin turns, tip over as it traversed the zig zag switchbacks or simply throw me out as we traveled over the short, but intense, camel hump hills. I could literally picture myself falling 40 feet to my death every time we approached a turn. I was scared.” (https://www.linkedin.com/pulse/what-wild-mouse-crazy-german-engineer-taught-me-geoff-thatcher)
The past month has been a bit of a ride on The Wild Mouse. Nothing tragic, and I definitely don’t picture myself falling to my death, but the camel hump hills and hair pin turns are a real thing.
I did have a few weeks (mid-April until the beginning of May) that were so full of side effects (and quite frankly, my fair share of discouragement) that I didn’t even want to report to my doctors, let alone my support group. Then the first week of May, I had almost no side effects, and morning after morning of energy. (It is typical since I found the tumor in my arm and all the months since then that I am still wiped out in the late afternoon and go to bed pretty early. I have just used all my emotional and physical strength to get through the day and I’m not good for much in the evenings.)
Taryn and her boys were here the whole first week of May and went home the morning before last week’s treatment. I didn’t even look at my phone regularly for the 6 days she was here. That means I felt well and stayed busy.
I have noticed another trend; when I feel lousy, I spent way too much time on my phone, scrolling to pass time, and ignoring messages from my family and friends. Sorry that you have probably felt the effects of those times and wondered what’s up.
I had a great time with Taryn and her really sweet boys. They were so good and fun. We even went to the zoo (I had to ride an electric cart because of my knees, but it’s a pretty sweet ride).
By the way, I went to the doctor again about my knee pain. The left, which I had a knee replacement on almost 3 years ago is terribly swollen and the right knee has the osteoarthritis that begs for a knee replacement that no one will do now that I have blood cancer that gives me tumors, so I’ll have to learn to manage that a different way. The doctors don’t know why the left knee is suddenly so swollen, but they think it’s just the metal and physiological reaction to all the chemicals in my system from chemotherapy. Hopefully that means it will resolve itself after this treatment and the stem cell replacement.
The induction treatments are halfway over, which means that I’m in my third of four month-long cycles and they’re cutting back on how many chemo drugs I get at a time. It will be three of the four targeted therapy drugs most weeks now, alternating Daratumamab and Velcade, but I still take Revlimid every day and they’re still pumping me full of steroids. After that is prep for a stem cell transplant in July. I’m hoping to get a schedule for all the tests and appointments related to that soon. Of course, that’s all dependent on my body still reacting well to the treatments.
I still had a few good days after last week’s treatment, but since last Saturday morning I have been hit with 7 full days of what I call a buzz/fuzz. If my body had a sound it would be a buzz, from the top of my head, sometimes all the way down to my feet. My skin feels thick and fuzzy, and sometimes my head is so fuzzy that it is cognitively impairing (so unnerving to not be able to speak or think clearly), and sometimes I’m unsteady on my feet with Vertigo type feelings. The doctors can’t find a cause, except the cocktail of poisons I ingest or get injected constantly. They also don’t have any suggestions for what to do about it.
By the way, we prayed and fasted about whether to go this chemotherapy route. It was not an easy decision, but it was the right one for now.
So, I am experimenting with my diet and varying levels of exercise. Nothing seems to be helping so far. I am about half and half of days where I’m really impaired to days where I have to just alternate up and down times but can do most things, just slowly. Sadly, Sundays are my worst side-effect days, so I miss church very often. Thank Heaven for the zoom broadcast that started during covid and is blessing me right now.
I have cut freeway driving out for now, as I don’t trust my response time and clarity of thought, so I’m back to having to be driven to all my appointments. I hate giving up that independence, but it’s just safer this way. Hopefully I can figure out how to manage it, or it will just go away on it’s own, as some of the side effects have done with enough time.
Most of the side effects over the past few months have been mitigated as I learn to manage them successfully. I have experiment with diet or OTC things or just learn that life goes on and it’s not worth complaining about anymore. May I remind you of one of Elder Holland’s maxims for living: “’No misfortune is so bad that whining about it won’t make it worse.” I may have to report these things to my doctor, but I just try to keep living and doing what I love and let the side effects and symptoms interfere with experiencing joy as little as possible.
Spring is such a wonderful blessing! We had about 8 days of rain in a row and the sky was glowing green. Usually that means a tornado is on its way, but in Liberty (so far, anyway) it just means that the clouds are reflecting the brilliant green from everything below them. It’s a beautiful time of year and a beautiful time and place (Hurrah for Zion!) to live.
Amanda is here visiting now, and Brennan will join us on Saturday. She has been helpful so much fun and our conversations are endless. She is an amazing cook and I went to bed last night miserably full from the most delicious Rosemary Chicken with a reduction sauce and roasted red potatoes. It was glorious. I could drink that reduction sauce. Tonight it’s Chicken Pot pie. She has improved mine exponentially. Hopefully I’ll control myself better this time and not eat until I’m sick.
I just want to mention something. I’ve gotten some remarks lately at how surprised people are at how healthy I still look. I have not lost weight, I am losing a bit of hair, but am still styling it okay so most people can’t tell, and I wear makeup when I go out, which covers some of the rash or jaundice you could notice in my face. I have been told that I will lose my hair and lose weight and look sick after the stem cell transplant, but for now, it is pretty unnoticeable that I have anything wrong with me.
That is a result of much improved medicines that target certain cancerous/cellular abnormalities (rather than all the good cells along with the bad), and that they pump me full of steroids. Every targeted therapy drug needs steroids to do it’s job optimally. Plus steroids, which normally make people gain weight, help cancer patients to keep their appetite up and their weight stable, which helps with all the healing/eliminating cancer cells the body is trying to do right now.
So, except for almost disappearing from church and evening events, I deal with all the impact of the cancer very personally, and hour to hour, day to day. It has made me unpredictable, because I sometimes have to cancel things very last minute, but not noticeable if you don’t have something scheduled with me.
We will celebrate Mother’s Day and Jeremy’s birthday with Tom’s family on Sunday and it will be a beautiful day. I hope you have a wonderful weekend.
Until the next update, have a beautiful weekend and life and a happy Mother’s Day. Since this whole blog is full of unsolicited advice, I’ll add some here: if you can’t think of anything she’d love better, write your special mother/wife/female a letter. It’s the best gift that keeps on giving, and costs nothing and takes real effort, which speaks volumes.
I am so grateful for your prayers.