Stay the Course
“Stay the course” is a nautical phrase. We spent a summer around boats and then watched those aliens from other planets sail in SF Bay for the America’s Cup, so I’m feeling nautical.
I’ve felt much the same over the last 4-5 days. That is good, of course – much better than one of the alternatives. One significant improvement came as a result of the thoracentesis I had done a couple of weeks ago. I whined about the discomfort of the pre-/post- process and period. but the results were good. Fluid built up in the pleural space between the lungs and chest wall was drained away. Quite a bit of it, though we never got an official total. One tennis ball-sized portion right away and maybe 1+ tennis balls over the next couple of days. Probably one of the larger tumors generated all the fluid, which then reduced my lung volume and put pressure in odd other places. We noticed an improvement in the days following the procedure. Of course if you are draining something from the body (particularly near the lung) there has to be a clean way to collect the fluid. Betsy and I have gone through 3 drainage bag experiences with the cancer. Nothing horrible or life style altering – just a drag.
The draining has fallen off to essentially zero over the last week and the actual wound oozes a bit. With no real reduction in fluid means no real improvement in the shortness of breath and other symptoms from earlier. So, I asked our hospice nurse to make goal #1 this week the removal of the drain. I’ve already over-shared so I won’t post a photo of the actual drain that spreads out in the space when adjusted by the radiologist. My discussions with this intervention radiologist are tiring. He’s good and thoughtful and (ahem) always right. And I’m good and thoughtful and certainly right sometimes. Before the original procedure I made him look me in the eye and promise me I wouldn’t wake up on a ventilator. I made him promise to talk seriously with Betsy if somehow I crashed and I was heading down that path. He was patient with me and explained about uncertainties and how his 20 years of experience gave him some good context to help make those decisions. I was respectful in reply, adding how relieved I was to have someone with his skills responsible for me, but that my request came from a different foundation. Betsy would hear his thoughts and recommendations and based on my wishes, reviewed right there with him in the room with the uncomfortable bed she would make the decision – not the other way around.
Now this was serious over-kill for a pretty straightforward outpatient procedure. And we had our advanced directives with us and on file with the hospital. But I was damned serious about this difference in decision making. To his credit he agreed, or crossed his fingers behind his back.
Now, for a number of days, things have stayed mostly the same. Very limited stores of short term energy. Very limited lung capacity though not so bad as to interfere with sleeping. Pretty limited appetite – some food items, by the consistency, taste, presence or salt of sugar – are attractive and I can have some and feel like a regular person. Apple sauce and yoghurt reign supreme in this category. Other goods, which I adore visually and from memory, prompt a gag reflex. So far I haven’t really lost weight and have been pretty good about reinforcing my nutrition.
Our most important experience and lesson from the last 10 days or so has been the importance of a companion for Betsy. I mentioned at the end of my last post how Betsy’s friend Christie came up from DC and spent 5 days or so as our inaugural companion. She helped with laundry, and meals, tucked a blanket in around my legs, did some shopping, went hiking with Betsy a couple of times, and in more times than I could count (since I wasn’t present) had that extra cup of coffee/tea/wine and became an ultra-effective listening post.
If you ever have a chance to offer this very special service to a close friend, the impact is unimaginable. Up here in the woods, there are some extra constraints that make it important the companion is self-sufficient. And of course the relationship with your friend/caregiver has to be comfortable enough to overcome those little body unpleasantries. And just in case we forgot in this conversation this companion is for the caregiver. Hospice and home health and other organizations have marshaled things to help the patient. This is for the spouse/friend/parent/child who makes the calls with questions about an elevated temperature, who makes yet another trip to the pharmacy, and who wakes up in the middle of the night worrying about the future while emptying the dishwasher, double checking the insurance paperwork, etc.
My family has put a schedule together to provide this companion service for the next several weeks. Our Katy is up right now, and my sister Mary has already spent a week and will return to for a long week down the road. And Philip and Mary insist a long weekend up here is something they could pull off. If we were in Ashland I’ve no doubt that a similar cadre of special people would be assembled in no time. Up here, with so many of our friends summer residents with permanent homes far away, that could have been harder. But, for the short/medium term – the phone lines and text boxes have been hot.
Which brings us to a decision we haven’t made yet, but are leaning to. Once the weather here becomes more of challenge we’re thinking of moving “operations” down to Philadelphia. Philip and Mary have a large house and they can host our dog. Or we could find a nearby “suites” hotel for the people.
“But wait!” you are entitled to ask. “I thought you were on hospice and that your death is just weeks away.” “What’s with the longer term planning?” Well – partly because that’s what Betsy and I do – plan contingencies. And in our defense even just a shift down to Philadelphia is a pretty big deal, including finding a hospice provider there with which our local hospice can coordinate. Most importantly I still don’t have a predictor of the glide path that my body will take me down. Shallow? steep?
In my last post I promised some more reflections on hospice. Those will come, but not tonight.