Making a Way in the Wilderness

The title for this post tells you the good outcome of yesterday's appointment, but I'll back up and give you the play-by-play. We set out around 8:40 for the noon appointment, listening to Leland's iPod playlists, which he named "Daddy Do It" 1, 2, and 3. These were some of the gorgeous views along the way (to and from). I've missed these Central PA views. The signs for Mastriano, our white supremacist governor candidate? Not so much. passing a town named Lilly We've always wanted to go! The Hillman Cancer Center at University of Pittsburgh Medical Center is huge and rather confusing (e.g., there is no central place to check in), so we were glad we gave ourselves plenty of time. This was my first time at a cancer center; it was sobering to see patients whose cancer was visibly advanced, wrapped in blankets or using walkers or wheelchairs. I felt like I shouldn't be there, but I'm also a card-carrying member of this club none of us wanted to join. W...

It's been four weeks since we flew from Hamburg to the US and my health spiraled out of control. It seems like a lifetime. When the plane landed in Dulles, I didn't have the strength or lung capacity to take a single step. Even last Friday when I was discharged from Mt. Nittany Medical Center, walking 5-10 feet (with oxygen) left me out of breath. Since then I've been increasing my stamina and gradually venturing out on short walks around the neighborhood. This was a week of firsts. On Monday I walked a mile for the first time (to Atherton Street and back), with Lily as my oxygen tank caddy. I bumped up the oxygen level, walked very slowly, and monitored my oxygen saturation levels. Everything went fine.  I also drove by myself for the first time. The last few days I've been able to breathe without supplemental oxygen for extended periods while I'm sitting. I use the pulse oximeter to gauge whether I need oxygen again (i.e., if saturation falls below 93%). As I writ...

I just hit "send" on this letter to my dean and associate dean. Mic drop. I've never sent such a scathing letter, but it's definitely called for in this situation. I'm not expecting anything other than a "Oh, that wasn't how we intended to make you feel; our hands were tied" email. Dear Dean Lawless and Associate Dean Lloyd, When I wrote to Professor Land [my department head] to see if I could get a course release this fall due to having lung cancer plus complications from pulmonary embolism and COVID, I had no idea what I was in for. When faculty friends in other colleges have had health crises (ones that don’t warrant a full-semester medical leave), their department head or dean has simply said, “Don’t worry about teaching this semester. We’ll figure it out.” I figured the same would happen in my case. To be blunt, the way that my case was handled was a colossal failure of leadership. As my husband and I have shared my story with colleagues at PSU ...

Our friends Anna, Carol, and Allison have set up a meal train for us. Now that we know Lily's volleyball schedule, we have dates for meals through mid-November. We're grateful for the delicious meals people have provided thus far. For those of you who are local, here's the link: https://mealtrain.com/zokyke I'm doing well at home on 1-2L oxygen. I have to bump it up when I go outside to walk or when doing stuff around the house. Today I got more than 3000 steps for the first time since July 27!

It's official: I am being discharged today! It feels like I just did this... Three respiratory therapists came by to do my discharge test. First I had to breathe room air until my oxygen saturation came down to 87. We chatted for several minutes and my oxygen was holding steady. Finally, one of the therapists said it was taking a lot longer than anticipated for my oxygen to drop (we couldn't do the next step of the test until then), so I suggested that I could eat my chocolate chip cookie to see if that would lower my saturation. Sure enough. At that point, they hooked me up to 2L oxygen (with my heparin IV in tow) and I walked very slowly while pushing a wheelchair around the hospital floor. I did one loop and stayed above 90% saturation, so I passed my test!  When I was admitted on Monday I was on 30L/minute oxygen and my heart rate was over 100. I'm now on 2-3L/minute and my heart is back to normal range. I feel so much better, but I know it will take time to get my stre...

I'm still waiting for answers. No results yet on the bronchoscopy (to determine if there is an infection). It could take up to 5 days to get results from the various cultures. Dr. Vilensky thinks that at this point my breathing problems are due to the blood clots and pneumonitis (lung inflammation), not COVID. That is kind of a relief to hear. He said it can take up to 12 weeks for blood clots to dissolve. I had been under the impression that they resolved more quickly, so it's helpful to have a more realistic timeline. I may get to go home tomorrow if my oxygen levels continue to improve (I'm currently at 6L oxygen, down from 30 when I arrived on Monday). I need to get down to probably 4L before I can go home. What is really freaking me out is the possibility that Tagrisso is causing the lung inflammation. This would mean having to stop Tagrisso (all other medications in this drug class would have similar side effects). The other treatment options are not nearly as effecti...

I am doing much better than yesterday, both physically and emotionally. (If I'm honest, it helps that I'm finally ahead of Nel Kopp in our current game of Words with Friends. For the last 2+ weeks I've been getting thrashed.) As of this morning, I'm off the high-flow oxygen fire hose and back on 6L oxygen; my heart rate is back closer to normal range, compared to 95-100+ yesterday. So the treatment plan seems to be helping. I had a decent night of sleep, despite the 1am blood draw and being able to sleep in only one position due to all the IVs and contraptions.  I had a long talk with Dr. Vilensky, the pulmonologist. The CT scan showed that there are are now cystic areas and scar tissue on my lungs that weren’t there in June, which could be due to COVID or the Tagrisso targeted therapy. Also, I now have a superficial clot in my left leg and a different, larger clot on my lungs than the two small clots I had in Reston. This could be because Tagrisso, lung cancer, and COV...

Until about 1pm I had been doing pretty well. I even spent part of the morning off of oxygen during a student's comps exam on Zoom. Then out of nowhere I felt really short of breath; even on 6L (maximum) oxygen my saturation dipped into the 50s at one point. Leland had the brilliant idea of putting both cannulas (oxygen tubes) in my nose--one from the oxygen concentrator (6L) and one from the portable oxygen tank (5L). That helped stabilize my oxygen level until the ambulance came.  So I'm back in the ICU on high-flow oxygen. :( The doctors are investigating various possibilities, including pneumonia, some other kind of infection, side effects of Tagrisso (my cancer medication), or ??? I'm back on heparin (blood thinner), antibiotics, and steroids. My oxygen and heart rate are slowly starting to improve.  Just this morning I had called the Mt. Nittany physicians group to see if I could make an appointment with any of the 3 pulmonologists in their practice. No openings until...

Thanks to the many friends and family who have written to ask how I'm doing. We arrived home on Wednesday evening, after waiting 5+ hours at the hospital for a delivery of oxygen tanks from an outside company. As the morning dragged on, the nurse and case manager assured me that the only thing holding up my discharge was the oxygen delivery. At 11-something the driver said he would arrive around noon. Noon passed, then 1pm. A little after 1, the frustrated nurse manager brought two oxygen tanks she had rustled up. We decided that if the delivery didn't happen by 2pm (the driver assured her he was on his way and would be there by 2!), we would just leave with the oxygen on hand. Two o'clock arrived: still no oxygen. We began the discharge paperwork. Finally, Nurse Allyson wheeled me to the entrance with my oxygen tanks and I got in the car with Leland at 2:45. The case manager later told me that the delivery guy arrived 15 minutes after we left. I have no idea how these comp...

Tomorrow I will go home after 13 days and nights in the hospital, 10 of them in ICU. Leland is driving me back with supplemental oxygen (if needed) and there will be oxygen at home when we arrive. I've lost 10 lbs. and a lot of muscle. I get winded walking around the hospital room. But I am getting stronger and feeling better every day! Most of the day I haven't needed any oxygen. The song that keeps coming to mind is Freedom . I can’t say I’ve ever been able to move my body like Jon Batiste and his entourage—and I probably never will, no matter how strong my lungs are—but the song captures how I feel on the inside. I’ve also been reflecting on Christian Brady 's writings on the Psalms and lament. They offer “a healthy model for our own journey through grief: cry to God, lament, confess our faith, call God to action, and praise God.” Excerpts from Psalm 86 resonated with me: Hear me, LORD, and answer me, for I am poor and needy. Guard my life, for I am faithful to yo...

Unless you study anthropology or animal behavior, you've probably never heard of the term alloparent : an individual other than the parent who helps care for offspring. A related term is fictive kin--people who are like family. When I first stumbled upon alloparent several years ago, it immediately resonated because it described the kinds of relationships we've developed with some close friends and neighbors who stand in for us as parents when needed. Alloparenting--sharing the responsibility of parenting--is the opposite of the isolated, nuclear way that many US families operate. My time in the ICU has underscored the need for, and importance of, the alloparents in our lives. Like many academics, we don't live near our families, so we have created a community of what I now recognize are fictive kin and alloparents. Our friends/neighbors Tim and Allison have helped with the care and feeding of Lily (maybe someday we will do that child swap we've always talked about). Ou...

...when you are downgraded from ICU to a regular hospital patient! I've never been so happy to be downgraded. Basically it means that I have fewer people checking in on me and will have a different team of doctors and nurses. The doctors and nurses have been very pleased with my progress and think that Wednesday is a realistic timeline for going home. The infectious disease doctor calls me her "superstar" and Nurse Julie refers to me as her star patient. She says she gets a lot of older male patients with "bellies" who don't want to lie on their stomach, take extra oxygen when they need it, or do what they're told (also, some still insist they don't have COVID). I'm being a very compliant patient (i.e., doing a lot of proning) and they say that has been a key to recovery. I'm still on oxygen but it's being lowered every day and I'm not as winded when I get up and about. I had a great visit with Jonathan and Jeanne yesterday (the nurse...

Dr. El Khouray came in yesterday and determined that I'd reaching a tipping point, meaning the worst is behind me and I've continued to show improvement. This was really, really good news to hear. Proning continues to be very effective, so I've spent a couple hours each morning and afternoon on my stomach, in addition to sleeping on my stomach at night. In the afternoon I invariably fall asleep since there is nothing to do other than listen to an audio book! I'm able to move about the room more; yesterday I did something like 4 little loops with an occupational therapist.  Yesterday I was down to about 11-13 L oxygen/minute. The case manager told me that to go home I need to be at 6 L or less. Today I'm at 6 L and holding steady with my oxygen saturation rate. I haven't talked with a doctor yet today, but I think this means that Monday is still a realistic release date. Until today I had thought that Monday would be out of reach; I didn't want to set myself ...

The signs keep looking up, albeit very slowly. Last night while I was sleeping they were able to reduce my oxygen flow to 60% (down from 90-100%). The doctor switched up the steroid treatment a bit, which he thinks helped. Today I'm still on somewhat a reduced oxygen flow and have also graduated to a lower-flow oxygen tube. It is much more comfortable, less noisy, and allows me to breath in and out through my nose (instead of in through nose, out through mouth). I've been spending more time in bed in the prone (stomach-down) position because this really helps my oxygen levels recover and is a proven COVID therapy. I am still on blood thinners, but at this point they are primarily treating me for COVID (with an underlying cancer diagnosis). Moving from bed to chair still takes a lot of exertion, but it's getting a little bit better, i.e., my oxygen doesn't drop quite as low. I had a fabulous nurse today (Julie) was who very attentive and encouraging. She also told me tha...

The last 2 days have been up and down. Monday night was rough. I slept well for about 4 hours until I had a COVID pneumonia coughing fit. Whenever this happens, my oxygen levels drop, heart rate (HR) skyrockets, and it takes me a long time to recover. The oxygen tube in my nose was making weird noises, nurses came in to draw blood and change medicines, I had more coughing fits, etc. So I never got back to sleep. However, throughout the day my oxygen levels and HR improved and I started coughing less. I've been spending most of the day sitting up in a chair.  My brother came to visit and shared funny pictures and videos of Maya (their dog has, shall we say, creative ways of expressing her crushes on male dogs in the neighborhood), as well as some old family photos he recently received. Leland and I also had a brief Zoom call with our pastor last night. My friend Alix visited today and Leland and Lily will be here tomorrow. Thanks to my friends and family in the DC area, I have visit...