Update 2023-0625

A bump in the road

Previously on Update 2023 …

Deep lung pain put us on a hospital run late one Thursday night in April. We learned I had a pulmonary embolism (PE). The blood clot was a side effect of one of my cancer drugs. I came through that without too much hassle except that blood thinners are now a regular part of my life. I was also taken off the bone strengthening and mood-stabilizing estrogen I’d taken since I had a hysterectomy at age 28. Estrogen replacement drugs can cause blood clots too and we’d like to avoid any more of those.

The cancer doc delayed the start of Cycle 3 of treatment for one week to give me a chance to recover from the PE. That seemed fast but then I am all about wanting to get to remission quickly and get on with my life so I said, “Let’s do this!”

Cycle 3 was a Doozie

Cycle 3 found me getting progressively sicker and having a complete lack of interest in food. I remember being told that the treatment and its side-effects were cumulative. So there was that. Beyond the difficulties that you might expect like moving about and constant discomfort, I started finding it hard to concentrate and the fatigue was so severe that it was difficult to write, talk on the phone, even hold my phone, read, or carry on a good conversation. Oh, and I developed a rash that encircled my chest and back like a glowing red sunburn. I was a bit of a blob. The collateral effect on Jackie was not nothing.

Hours after the last infusion of Cycle 3, as we settled in for the night at home, I started shaking involuntarily. We later learned I was experiencing rigors. Rigors is the body's reaction to a severe infection of viruses or bacteria in the bloodstream. I did not have a fever nor any symptom on the care team’s list entitled, “When to Call Us or Go to the Hospital,” and so we waited until morning. The next day I was only minimally responsive and ultimately lost consciousness. That’s when the call went to 911. My blood pressure dropped so low that it was undetectable and I ended up in the ICU. The ED doctor diagnosed septic shock and pneumonia. The treatment included lots and lots of antibiotics and the rapid infusion of 11 liters of fluid. It worked. My blood pressure came close to a normal level. I got better.

In the meantime, my daughter Ina flew to Washington on Mother’s Day to be by her moms’ sides. This was her second trip in a month to take up her post of helping Jackie and being by my side to keep watch and comfort while I hung on tight.

Nearby friends kept tabs with Jackie and Ina, rallied with messages of love and care, installed needed railings at our home, and I had a couple of brief visits that boosted my spirits more than I could have guessed.

On the very last day in the hospital, only minutes before discharge, my local oncologist, the fellow who referred me to Hutch Cancer Center in Seattle for specialized myeloma treatment, came to visit. He was told by the hospitalist doc that I required a “social visit.” Huh? I’d been asking for an oncology consult since the first day in the hospital and was repeated told it was not necessary. Oh well, it was good to see Dr. Sui again and talk over what had transpired. He assured me that all was well and that I’d just hit a bump in the road. “Stay strong and carry on.”

Because of the massive amounts of hydration, I weighed 30 pounds more when discharged from the hospital than when admitted 9 days before; I was essentially a water balloon! My body had been through so much and I was pretty depleted, very weak, and my stamina was shot.

We learned a lot during that episode and hospitalization:

• Uncontrolled shaking with or without a fever is an occasion to head to the hospital. If we’d had that knowledge when the shaking started, we’d have had time to drive to the hospital in Seattle that is associated with the Hutch Cancer Center and would have been closely monitored by my cancer care team.

• If urgency requires you to go to the nearest hospital, don’t take “no” for an answer when asking for a consult with a cancer specialist. Request the specialist early and demand it if necessary. If an oncologist is not brought into the local hospital care team, once stabilized, initiate a transfer to the hospital in Seattle associated with the Hutch Cancer Center. The hospitalists caring for me at the local hospital kept saying that an oncology consult was unnecessary all the while they chased numbers on my lab results and attempted to stabilize me at levels that would make sense for someone without cancer. My cancer treatment gives me a very different “baseline” on most all commonly used lab tests. Without the perspective that a cancer specialist has, treatment can be (and was) a bit chaotic.

• If you want “your person” to stay with you overnight at the hospital, let the charge nurse know that you have PTSD and that person is your “emotional support person” — a true statement in my case. With that you get a cot and bedding and a suspension of “visiting hours” rules.

• It’s fine to be assertive, but always be insanely kind and considerate to your care team even if your frustration levels are high. We did this and I’m convinced it got me safely out of the hospital in a fairly expeditious timeframe.

• Always be prepared with a list your allergies, all the medications and supplements you take, and your medical history. Keep it handy, updated, and ready to go (printed copies at home, in your glove box, in your luggage even, and on your phone). Everyone needs to know this information including people who may not have access to your chart records like the paramedics. It’s a way to even confirm what is on your chart records. During this episode, I was given an antibiotic to which I am allergic that was noted on my chart. It’s unclear how that happened and it caused an unnecessary additional set of potentially life threatening problems.

Once I was out of the hospital, we travelled to Seattle and consulted with Andrew Cowan, my cancer doc. He suspended treatment and prescribed “aggressive Physical Therapy” for me to regain my strength before determining and executing the next course of action. PT has made it possible to go from barely able to walk for 6 minutes while using a walker to trudging strongly under my own steam through a couple of hours of errands.

It was wonderful when I had enough energy to catch up on and continue my daily posting of “Visual Gratitude” both here on SubStack and on Facebook — images that bring me joy, lift my soul (no explanation). My happy is fueled by this visual gratitude list.

I am delighted to say that my cancer care team cleared me to travel to attend our son Jonathan’s wedding. Since my immunity is clearly compromised as demonstrated by recent septic shock, I was armed with a stack of N95 masks and all those cautionary skills we learned during Covid. Off we went. I carefully paced myself through the festivities and got to be present for all the important parts.

What’s Next?

It is stunning how decidedly I’ve bounced back. It shows the resilience of my body (and my mind) and gives us hope for what life can be like when I get through this initial treatment period and I level out on some form of maintenance treatment. That said, all my inclinations to map out and plan this treatment course quite literally lie in tatters on my desk.

In the recent days I’ve completed several tests to determine what my current cancer status is — blood tests, biopsy of bone marrow aspiration (BMA), full body CT/PET scan. Some of these tests take a couple of weeks to process and get results. The early results we’ve seen seem to indicate that we’ve got myeloma on the run. We await complete results.

June 30 we will learn specifically what my current cancer status is and what my treatment options are at this juncture.

Postscript: A Matter of Kindness and Perspective

As I was leaving my recent BMA, the nurse said “I hope you have a safe drive and a good evening. Hopefully we won’t need to see you in here again.” I took a couple of steps, stopped, turned to face her, and said, “Thank you for your good wishes, and on the last one — this, getting BMAs, this is a part of my life now. If I’m not doing this, then I am not alive. So I’ll see you next time!”