A Silver Lining Update
We've sought answers from the crystal ball these first few weeks, but we were warned by Mark, our 'Patient Navigator" at Banner / MD Anderson that from week-to-week, things may change and may not be as predictable as we'd like. After all - each person's body responds differently to chemotherapy. But we honestly didn't expect positive changes, and are happy to report it's been a week of many "ups" with the "downs".
Melisa's Positive Report 4/12/22
mcphotos55 (Melisa's Instagram)
"Day 9. Had my second dose of chemo yesterday. My bloodwork showed my immune system is still working great. The doctor was happy with my protein level and said good job on the nutrition 😁.
I can say I felt much better this Tuesday than last Tuesday.
Last Tuesday I had already taking some anti nausea meds even before chemo. Yesterday, I had my appetite, more energy. I listened to inappropriate music while snacking and getting chemo 😁.
Last week I was exhausted. This week I had Chase visiting. He drove me to chemo. He played the piano at the hospital which was lovely.
It feels like I am definitely feeling better already. I gotta think something is working. So probably in June they do more scans and we can confirm the tumor is smaller...can't wait for that."
We are watching for what has been described to us as the 'pattern' that we'll fall into with chemo, and I suppose we can see it out there. Planning for Melisa's third infusion today, we know what to pack for the trip. We know what to expect when we get there: first floor, labs - second floor, doctor check-ins - third floor, chemicals. That said - nothing beyond the treatment itself has been consistent so far.
Side effects after the first infusion hit the second day, and were horrible. Melisa was wiped out, but per her messaging above, last week before and after the second infusion was different - and BETTER. She felt way better going in, and coming out.
Expecting another week like the first - Chase (our son, in his 30s) had flown in to assist with the drive/visit to MDA Center so I could work. He got to spend time with his Mom on arguably 'great' days compared to the first week, which was a wonderful surprise. We'd commented on how Chase would probably fill the lobby of MD Anderson with music if he saw their piano, and he didn't disappoint (to the delight of many patients at MDA). Ultimately Melisa really didn't turn 'down' with side effects until day 4 of last week which was after Chase left, but even so, the side effects were more manageable this round.
If the side effect timing was different, the symptoms and effects themselves were as well. Still fatigued, but less diarrhea and nausea, but more constipation and she's developed a rash all over her body that's pretty impressive, and itches like crazy. She jokes that it looks like she's been on "Naked and Afraid" and the mosquitos got her in the jungle. Her back does indeed look like a mosquito success zone, and we've found cremes and salves plus Benadryl from our neighbor (thanks Maurita Strait!) to be very effective. We'll check with the Doctors later today on alternatives.
She's not lost any more weight the past week, which is great, and her appetite is better than the first week, too. So we're taking advantage of that and offering whatever sounds good as it comes to her. It's many small meals, which helps her avoid pain from feeling empty. It seems she needs just enough food at constant intervals to feel good vs. "meals". That's what's working.
Roll with it, Baby
Melisa made a comment that she hit almost 10,000 steps today as she's taking Doctor Gomez's advice to stay as active and 'normal' as possible. Last time she hit that many steps was over a month ago, prior to chemo. Anyway - she's been able to do more at the Airbnb house this week and has kept up with the laundry and running back and forth to the guest house as a motivator for "steps" she needs to keep activity as high as she can.
While taking advantage of the good days, Melisa even impressed Chase while he was here with a few quick turns on her quad. It's difficult to explain how her demeanor changes when she gets a few hundred cc of quad-motor rolling - she's more aggressive and confident than you might imagine, and it was good to hear her "whoop!" of joy as she slid around on the driveway to show Chase how it's done. He and I had a short ride to James's and then into Bear Canyon for a quick demo trail ride before he headed back out to California. That evening was a good reminder for all of us, of all that is good in our lives. We're very thankful to find moments like those.
The Results of Support
The continued support and positive messaging from everyone here on the blog and online has been amazing. We appreciate the GoFundMe support more than we can say, and it has given us the kick that allowed us to pursue the trials which have made a huge difference so far.
The biggest impact is that as part of the research trial - when we arrive for treatment at MD Anderson we do not go to the same area as all other patients for their chemotherapy. Melisa goes to the research side of the building where there are only a handful of folks getting treatment. We have the same nurses and support staff every time and a smaller 8 bay room where chemo is carefully administered as part of the research study. I asked the nurses how many people they see in research and they noted it's approximately 30 a day vs. hundreds across the hall on the other side of the building.
Paying out of pocket to rush the extra test/trips prior to starting therapy has definitely paid off - and we thank you all for your support on the GoFundMe. We're catching up with insurance now,, and working through the bills that literally flew at us from all directions in the last couple months. It's a stack of paperwork.
The Light is You
Today, we head South again to the Valley and MDA for infusion #3. We'll see what surprises await, and we very much understand that we still don't know what we don't know about what's coming. That said, the last two weeks brought positive change, good moments, and great memories with the friends and family who've gathered to support us.
As we face the storm clouds during this period of our lives, we are dazzled by the silver lining that edges the dark clouds of cancer. We've come to realize that all of you are the sunlight shining behind our storm. It's your brilliance that creates the beautiful contrast in a metaphor we haven't fully understood until now.
We thank you all, we love you, and we'll update again soon.