(Note: if you're joining this story in-progress, you can check out "Steven's Story" at the "Home" link above for an up-to-date overview.)
Okay, this time it's been a little over two months since the last update, instead of three months last time… Progress!
Bullet points seemed to work really well last time (although they're a challenge to format in CaringBridge's text widget). Let’s get right to it, shall we?
I’m still here. (Yes, you should hear Elaine Stritch singing that.)
It’s getting harder to stay in denial as things get more real. I keep telling myself this is a good thing.
I’m planning to have my Autologous Stem Cell Transplant at UCSF.
- I’m still waiting to hear from UCSF about when they can actually schedule this.
- Key decision factor: UCSF does this in-patient, Stanford out-patient.
- In-patient requires less at-home caregiving: 2+ weeks after discharge from the hospital, as opposed to many more weeks of shuttling me back and forth to procedures.
- Out-patient would also have required making my home environment suitable to keep infection away from a Hickman catheter in my chest, via rules like:
No open windows.
AC and furnace filters changed by someone else before anything gets started.
No being in a room that’s been vacuumed or dusted for at least 45 minutes afterwards.
No take-out food.
Low microbial diet: no yogurt, no berries, etc.
Mouth care at least five times a day but no flossing. (What?! I am fastidiously addicted to flossing…)
- My “at-home” chemo regimen (VRd: Velcade-Revlimid-dexamethasone) is on hold after six three-week cycles.
Another cycle or two may be in the offing, depending on when they can schedule me for the transplant.
- My mom sent me Tom Brokaw’s book, A Lucky Life Interrupted, covering Brokaw’s journey from being diagnosed with multiple myeloma in 2013 to its publication in 2015.
- The book has been infuriating, because:
It has a lot of digressive anecdotes about amazing news stories he’s covered, amazing people he’s met. (In fairness, this makes sense to try to sell the book to people who are interested in Brokaw, not just his medical condition.)
- It has “advice” that’s hard for mortals to follow, like: everyone should have a doctor like his daughter who can help interpret what your medical care doctors are saying, advise you about terminology, etc.
- The book has also been really valuable, because:
- Brokaw’s taking two-a-day naps while on his Revlimid normalized the fatigue I feel. I was worrying that the fatigue meant I perhaps wasn’t responding well to the VRd. Turns out that at least part of the fatigue is likely because my body is trying to deal with the fact that it has cancer. (And even if that’s just an amateur explanation, hey, it makes me feel better about getting the rest I need…)
- The book helped me realize how really lucky I am. Brokaw had severe crawl-from-the-bed-to-the-bathroom pain from the damage the myeloma was doing to his spine and bones. I’m walking around and singing and playing piano. (So far.)
- The book opened my eyes to how much myeloma treatment really has progressed in just the last five years. Brokaw describes Velcade as “heavy artillery” that they introduced to “carpet bomb” the cancerous plasma cells after he didn’t respond to the Revlimid like they hoped. Velcade is now a part of the standard VRd treatment which I was put on right away.
- Similarly, Brokaw describes the Stem Cell Transplant as something that he felt fortunate to be able to avoid by using traditional chemo, whereas it’s similarly become a very standard course of treatment.
- The book has been infuriating, because:
I’m still working (from home) by day.
I’m extremely fortunate that they’re being very supportive about tailoring my projects and demands to what I have capacity for.
I’m continuing to perform and participate in online cabarets:
Becky Owens’ Quarantined Cabaret Live! Facebook group has become an amazingly supportive “home” and I’m really enjoying the friends I’m making there. Performances (with links for the curious):
- I’m on deck to start participating in Lisa Falls’ Long Island Virtual Cabaret:
- 2020-07-11: UPCOMING!
Both of these groups are on Facebook, let me know if you’d like an invite so you can catch the performances live. (There are a lot of really talented performers participating!)
I’m… managing at home.
I’ve had some amazing steady-end friends who have helpd with my grocery and transportation needs over the past few months.
I do still have a list of people who have volunteered in the past that I may still have occasion to reach out.
We’re all getting our social outlet over the Internet these days, so I can’t say I get any more overwhelmed by the loneliness than anyone else likely does these days…
If I’ve left out anything you’re curious about, don’t hesitate to ask.
Much love to you all,