Round 6 is done! My treatment plan is officially complete. It’s still surreal because we went from 100mph and lots of little things to keep track of to almost nothing. My fingers are hurting quite a bit from neuropathy and my overall lack of strength, but here’s a bit of what has happened and what is to come.
Stats from the Emergency Department visit to the last day of chemo
- 587 at home infusion line flushes (62 Midline, 525 PICC)
- 135 days since my ED visit that got me admitted
- 127 days from diagnosis discharge and the completion of my treatment
- 108 disgusting steroid pills
- 63 blood draws outside of inpatient stays (3-9 tubes each time – usually 3)
- 39 days in hospital
- 32 nights in hospital
- 30 chemo bags + accompanying nausea bags
- 15 eggs / embryos hanging out in a freezer
- 9 hospital rooms
- 8 doctor appointments
- 6 immunotherapy infusions
- 4 incisions for 2 biopsies, incl one deflated lung
- 5 batches of macaroons for my nurses
- 3 chest x-rays
- 2 PET scans
- 2 CAT scans
- 2 EKGs
- 2 full length eyelashes left around my right eye
- 1 echocardiogram ultrasound
- 1 midline, 2 flumes
- 1 picc, 2 flumes
- 1 fainting spell
- 1 night alone in the hospital (my fiancé and family are my heroes)
- 1 wheelchair discharge during diagnosis stay (walked out every other time)
- 0 blood transfusions
- 0 ED visits after initial admittance
Now What?
Now I have no labs. I have no doctor appointments until 2019. I have no PICC line. I have no chemo. I have a few weeks of prophylactic meds, but that is kind of it from a formal treatment standpoint since I’ve tolerated the treatment well, so I’ve been told. This is the time now when I wait and recover.
I wait for my PET scan results, which will be scanned for first thing in 2019. The doctor said pushing it out farther will avoid any false positives that are common with PMBCL. The treatment beats up the mass and tends to leave some scar tissue and inflammation, so the farther out we go the more accurate of a picture we’ll have. Of course if anything comes up, then I can reach out and we’ll address it and go into the hospital. The doctors told me to try to forget about them until the scan, but that’s a long shot. “Scanxiety” has been something I faced for my Round 3 PET scan and then in anticipation of Round 6, and I don’t know why this scan would be any different. Just have to continue to figure out how to address it and avoid it wasting too much time and energy.
Recovery is my full time job now. J says I’m like a princess trapped up in my tower away from the world outside. I said that makes total sense since I’m sequestering myself waiting for my immunity to come back… and that I’m the opposite of Rapunzel 🙂
My doctor said ‘life as usual’ starts 3 weeks after chemo is done – meaning eating what I want, exercising, etc. I’m not sure what usual means anymore, but I get her point. Physically, my blood levels should be about normal by then, and should get a big boost from finally being outside of the chemo 3-week cycle. My body though is in a place that is so foreign to me and is just so weak that it will take a lot longer. I haven’t been able to lift anything more than 5 lbs with my right arm (PICC arm), and I have rarely had a day when I wasn’t easily light-headed so I haven’t done really any yoga or exercise since May. In the interest of putting numbers to the concept, here is some context from my doctor: She said that I should expect it to be about 6 months before I’m at 90% of what my strength was before. I plan to start with shoulder mobility in my PICC arm and general strengthening of my posture (which has taken a MAJOR hit from sitting around so much) these next few weeks, and then at the 3 week mark I’ll move into more yoga and pilates movements and maybe some cycling to work out these lungs.
Aside from those things, there is the unknown recovery time for my neuropathy, fatigue, chemo brain, etc. Oh, and I think chemo has put my into menopause – complete with hot flashes. So now I rest and drink fluids like it’s my job. Potassium intake is currently at the top of the diet agenda to help with energy, dizziness, and nausea. I am not good about resting enough so I’ve made a goal tracker with these kinds of focus areas on it. The mental game is just as much of a priority too. I have a goal to meditate every day and make myself be honest whenever someone asks how it’s going. By not sugar coating my response, but either celebrating a good feeling or expressing a bad one, I feel stronger. I think it helps me address the mess of feelings rumbling inside. I surprisingly haven’t cried as much as I expected, but I also realize it may just be coming later. We’ll see.
Take care of yourselves! xo