Update

After last night’s post, which was distressing, I wanted to follow up with an update from today. John is comfortable and stable in a private inpatient room.

summer 2023 - pre-diagnosis: if only we had known sooner, if some symptoms had tipped us off earlier

Because his condition and circumstances have changed over the past two weeks, the flight and transfer yesterday were just really hard on John - much harder than getting him to Mexico had been even though he had medical personnel caring for him on the flight yesterday. When Raf and I saw him yesterday evening, it was so worrying and distressing.

But, after the ER intake last night (which was also so hard), John got transferred to a room very early morning. He woke up disoriented and panicked, unfortunately, but as the morning went on, he stabilized and was doing well.

For most of the day, he was comfortable, with his pain decently managed. John’s nurse is very kind and capable. The team there is also working on the edema in his legs - with medications and a nurse came and wrapped his legs. We also had a good meeting with the palliative care team; the two palliative docs were very kind and attentive. They will help John start making some adjustments to pain meds starting tonight to dial in pain management.

We are allowing the docs and nurses to gather information, run diagnostics. We reached back out to the lung cancer oncology clinic at UC Health (where he has gotten the bulk of his care in Colorado), and we are asking if the oncologist will come check-in and evaluate him now that he is in-patient. And, we are gathering lots of information to continue towards John’s goals: (1) manage pain, (2) get home, (3) improve mobility (through pain management, addressing edema, and re-gaining some strength).

At this time, while John stabilizes and we continue to see where his pneumonia goes, John is not eligible for cancer treatments (immunotherapy, chemo, etc). We want him to be at home, and we still hold hope that his pneumonia could improve, he could get stronger, and perhaps more options will become available again. In the meantime, we must explore all of the resources available to get him home, and with optimal quality of life for his current situation.

Along those lines, we have an informational meeting with a home hospice provider tomorrow. We had a very specific and very negative idea of what hospice care is. We are learning as we go, and have have learned that the negative association is due to the fact that many patients and their families connect with hospice much later than they could/should be to be best supported. And, that hospice care is the care that could provide the resources, equipment, and support to get John home, even while he does not have mobility and independence. If John’s situation changes, and cancer treatments are available to him again, which is our biggest hope, then he would be able to leave hospice care. Again, it is much different than our original, limited understanding on hospice was.

At this point, it is still too soon to tell what direction we will go. As I mentioned we are getting John settled, stable, and gathering information. But tonight, 24 hours after my distressed post of yesterday, it is such a relief to share that he is comfortable and stable. And we get to see him and love on him again tomorrow, which is truly such a gift.