Still wandering in the wilderness

My health developments have been discouraging and confusing. Yesterday morning they thought I had a chest infection (maybe pneumonia?) because I had a high white blood cell count, low-grade fever, high heartrate, and a phlegmy cough. So they put me on antibiotics. This was really crushing: something else on TOP of cancer and a pulmonary embolism. Then they tested me again for COVID with a PCR test (they tested me upon admission with a rapid test that was negative). The PCR test was positive! Some hours later they did a deeper nasal swab antigen test that was negative. After consulting with infectious disease experts, they think it may be a COVID reinfection, even though I just had COVID July 2-6. But it could be the vestiges of COVID earlier in July. They're not sure. Either way, the treatment is the same. This news really knocked the wind out of my sails. I told the doctor I had no idea reinfection with another variant was possible in such a short amount of time. He said researchers didn't know either until recently: a paper is just about to be published showing that reinfection can happen within 28 DAYS!!! PSA: continue wearing masks indoors.

I am on steroids for COVID, antibiotics for any other possible infection, and heparin (blood thinner) for the clots. I'm a jumble of IVs and tubes. My oxygen levels are still low and since yesterday I've had to start using a 100% oxygen mask fairly frequently when oxygen saturation drops below ~85% (in addition to the apparatus that delivers a lower dose of oxygen into my nose). Best case scenario is that I'm in the hospital for another week. :( We also won't be able to go to Michigan for my dad's 95th birthday celebration and family reunion in mid-August. This is heartbreaking. We were so looking forward to seeing everyone.

The good news is that my heart rate is in the high-60s/low 70s vs. 95-105 yesterday, signs of heart stress are improving, I'm able to talk more without feeling short of breath, and I'm getting back a bit of an appetite. Leland, Dr. Elkhoury, and the nurses said that I look better and sound stronger. Yesterday evening I got out of bed for the first time to sit in a chair, where I am sitting again today. The fact that I'm vaxxed and boosted twice helps protect against a more serious case of COVID. I've been able to sleep the last two nights (despite all the tubes and blood draws), so that has been a blessing, particularly since I struggled so much with insomnia for the past year. 

In retrospect, there's a lot I wish I'd known: to alert doctors immediately to any new shortness of breath and that lung cancer can lead to blood clots. Also, my German doctors should have taken me off hormone replacement therapy since estrogen can cause blood clots. And my oncologist should have checked me for a blood clot when I showed him the hard, inflamed, painful veins on my foot and ankle on July 20. Instead, he assured me it wasn't a side effect of Tagrisso and brushed it off as some random injury or occurrence. I wish we had pushed for him to assess for a blood clot, but we didn't know that then and deferred to his expertise as the chief oncologist. It's very likely that this led to the blood clot in my calf that migrated to my lungs. If it had been treated earlier, I might not be in this awful situation.

Dr. Elkhoury looked me in the eye and told me that I'm very, very lucky to be alive, particularly because I have a saddle pulmonary embolism. "Saddle PE is where a large blood clot sits atop or “saddles” the main pulmonary artery at the point where the artery divides and branches into the left and right lungs." It is particularly deadly. I had no idea at the time how close I was to death, although being totally out of breath after walking 10 feet on the plane was a clear sign.

Despite Dr. Elkhoury's reassurance that signs are improving and that we are on the right path, this has been very challenging and distressing. I thought once I was on Tagrisso I could just live my life and get cancer scans every few months. I never envisioned this huge setback. It is hard not to feel discouraged. I am feeling very much like Job.

Unlike Job, though, my friends have been kind and helpful and haven't asked what I've done to deserve this suffering! I've been reminded of the importance of community. My first day in the hospital, I had 4 visitors from different phases of life. Alix and I became friends when we lived in Chicago in the mid 1990s. Patricia and I went to grad school together at Cornell and had the same advisor. Irene and I did postdocs in the same department at UC Davis 20 years ago. These friends all live in the DC area now. Allison, my friend/colleague/neighbor in State College, happened to be in DC on Friday and came to the hospital right away. Thanks to my friends for just sitting with me, cutting up my food, brushing my hair, and other acts of kindness. My brother Jonathan picked us (L&L) up at the airport, brought them to the hospital ER, drove them back to his house, drove them half-way to State College on Friday (where they were picked up by our friend Christina), and then came back to visit me with his wife Jeanne yesterday. Our friends and neighbors have been taking care of Lily while Leland came to visit me (it's a 4-hour one-way drive). My friend Alisa, also from Cornell days, will visit later this week.

A friend wrote this about when she was very sick and hospitalized: "I felt that my community blossomed... it was revealed in new ways to me that I am surrounded by people who care about me and our family." This has also been true for me. I've never been so sick and weak, so helpless and dependent (except when I was a baby, of course). Caregiving--whether as a paid profession or something we do as friends, family, or neighbors--is sacred work.