Health Update #34: Unbroken Circle

Health Update #34: Unbroken Circle

There's been a lot going on since I came back from Louisiana in late June besides just the insurance snafu and moving treatment back to Michigan from Chicago. 

Mom passed peacefully on July 18 with dad at her side in comfort care on the back porch looking out over her blossoming hydrangeas. One couldn't ask for a more fitting transition. Unfortunately, I was in no shape to travel for the funeral the next weekend, but I was able to watch it streaming on Youtube. It was a beautiful ceremony and well tailored to her life experiences and beliefs. She would have felt honored by the testimonies as a good Christian wife and mother who epitomized loving one's neighbors, as well as taking care of strangers. She gravitated toward simple folks and simple living and minding one's own business. She took a "Bless their hearts" kind of approach toward others, except that she meant it. She was that kind of Christian. As we wrote in her obituary, she'll be remembered for her quiet temperament, good humor, and loving heart. 

Since early July after I returned from Louisiana, I've been struggling with health issues -- largely severe shortness of breath that makes it difficult to walk more than a few paces; lots of fatigue that kept me in bed or asleep for 20 hours a day; and terrific headaches that caused nausea and made it difficult to concentrate, read, or write. I also had five days of radiation before my mom's funeral which contributed to these symptoms. In early August, I tripped over a nest of computer cords wrapped around my ankles and fell face first, smashing my head on the arm of the couch.  Later, I learned that I had a couple brain bleeds (traumatic brain injury) that caused me to lose balance and fall a handful of times over the next week.  

From L to R: Me, Becky, Dan on distant SUP, Inkie on near SUP, Tim's knee.

Despite all the not feeling well, I was able to have a number of visitors over July and August. Cornelia and Rebecca came for a long weekend of boat riding courtesy of Tim and bar hopping in Ludington. Pris, Scy, and Hanna came for about a week to hang out, though unfortunately, I mainly slept because of headaches and what we now know was a brain bleed. Cornelia and Jack came for a few days when I felt well enough for a few excursions into Ludington and Reed City. Tim relieved the monotony with trips to Baldwin for jazz one night and funk another. Like I said, despite not feeling well, I was able to have quite a bit of companionship that I hope to continue through August at the lake house, and in the fall in Chicago.

In terms of treatment, bloodwork turned up low red blood cell counts (anemia) and high white blood cell counts (infection). A July Chest X-ray showed pneumonia in my right lung, which would account for the infection. They put me on a 7-day regimen of antibiotics. For the anemia, they gave me infusions of iron to try to bring up those red blood cell counts. And Corrine committed to feeding me high protein and high fat foods to combat the anemia: steak, eggs, yogurt, fruit, nuts, smoothies, turkey, sausage, hummus, ice cream, breakfast sandwiches, taco salad, tomato pie . . . anything that I can gather enough interest in to chow down.

Dr. H. ended up cancelling two sessions of Gemcitabine chemotherapy infusions because of the pneumonia and high white cell counts, though we were able to get in one complete cycle before the most recent CT scan last Friday. At the last appointment, because of the renewed headaches, falling and some short-term memory loss, he added a CT scan of my brain to an already-scheduled chest CT. We went in to the Ludington hospital for the scan, and then out to breakfast at the Old Hamlin for breakfast afterward, not far from the hospital. Corrine realized that she had left her phone at home, but we figured it was no big deal. 

When we got home, there was a message from the oncologist telling us to go straight to the ER for a consultation with a neurosurgeon. By then, we had seen the scan results -- brain bleeds on both sides: "Acute right holohemispheric extra-axial hematoma measuring 0.8 cm and a mixed density left holohemispheric extra-axial hematoma measuring 0.4 cm." There was a "right greater than left hemispheric sulcal mass effect without significant midline shift." That last sentence just means that my brain was swelling on the right side. It was the term "acute" in the first line that concerned Dr. H.

We drove the half hour back to the hospital and because Corrine knows the right words to use (bilateral subdural hematoma), they whooshed us back into the bowels of the ER. They reviewed the scan results and also sent them to the nearest neurosurgeon in Grand Rapids. The ER doc tried to talk me into going to Grand Rapids so that I could be admitted for observation and wait for the next available neurological workup and repeat CT scan to determine if it was an active bleed, even though the bleed was a week old and I wasn't showing any new or worsening neurological symptoms. They finally agreed to let me go home under self-observation and Corrine-observation until my appointment with Dr. H this past week. 

After nearly a week of rest at home, plus a few outings with Cornelia and Jack or Tim while feeling better, I met with Dr. H to go over the results this past Thursday. He seemed to be cautiously excited about a lot of good news in terms of kidney and liver function and bloodwork, but that was tempered with concern that there’s also enough disease progression (kidney tumors at 4x3 cm, a couple of new lung nodules, etc.) to determine that the Gemcitabine is not working as needed, which was expected.  There are a couple other drugs such as Abraxane (paclitaxel) and Keytruda (pembrolizumab) they can try if I want, but they have terrible side effects and aren’t very effective for my circumstances. But Dr. H. says he's there to do what I want, if I want to keep throwing things at the wall to see what sticks, he's willing to do that.

Dr. H. also said that from the CT scan, I do have a new, lime-sized spot in my right latissimus dorsi muscle that they don't know what to make of. He wants to perform an out-patient needle biopsy to see if there’s an infected hematoma to treat with antibiotics or if it’s metastasis that needs possible radiation or just observation. My bet is on metastasis with observation. I don't remember injuring it in a fall which would cause a hematoma, and can’t imagine it being from an abscessed infection from the pneumonia.

The other option we discussed is to stop chemo and immunotherapy for now and focus on general health and fitness, quality of life, and longevity from here out, unless some other treatment comes up in the near future. It’s nowhere near time for home-based hospice care, though more palliative care and other types of home or outpatient care such as nutrition, exercise, and physical therapy can be helpful.

I have to look over some research to decide over the next week what direction to go in, and whether or not to rule out chemotherapy and/or immunotherapy. 

So that's where things are. Nothing dire or immediate, and hopefully looking ahead to a much higher quality of life, health and wellness for a while. I'll travel a bit between Chicago and Michigan over the next couple months and hopefully Xmas in NOLA, with a number of visitors to Chicago and the lake house in the meantime. 

Most days over the last 6 weeks.