in the blender

Dear friends, here are a few updates:

Radiation: The radiation oncology team was able to map out a radiation plan for Val. The trick was to avoid major risk of damage to her trachea, esophagus and heart, yet still target the tumors constricting her breathing. Val has now done eight out of ten scheduled radiation treatments (five days a week). The radiation side effects of nausea, a swollen and constricted esophagus, and exhaustion really hit this last week, which made travel and the events of this week especially difficult. She has had enormous difficulty staying hydrated and nourished this week. When we return to Portland Val will do her last two radiation treatments. We will know approximately how much effect the radiation has had about two weeks later.

Bronchoscopy: If the radiation doesn’t provide sufficient breathing relief, another possible palliative option will be to do a bronchoscopy and either insert a stent to hold her breathing tubes open, or use a laser to burn off some of the tumors intruding in her airway.

General well-being: The last few weeks have been a real struggle. Val has been exhausted, nauseated, coughing (sometimes to the point of throwing up), struggling to breathe, in pain, and weak. The various drugs she uses to manage these issues create side effects that must in turn be managed, and one has to keep track of the way the various drugs interact. I and the rest of her friend-and-family care team have found it increasingly challenging to help her manage her medications and health appropriately.

Some comfort care help: Many people have asked me why we haven’t invoked the help of hospice nurses. The answer is that under our current national health care system, you are not eligible for hospice care if you are still seeking curative treatment. So even if you are really sick, you can’t have help at home until you give up trying to get well. For months I have looked for palliative (comfort care) home help for Val, but our only option has been to visit doctors at their clinics. In fact, at Kaiser it was months before we were even permitted to connect with the palliative care teams in the clinic. These compassionate professionals (and their counterparts at OHSU) have offered a lot of helpful guidance, but we have reached a point (in truth, we reached it months and months ago) where it would be an enormous help to have someone to call at any hour for advice, and who can even visit us at home when things get difficult.

So when Val began palliative radiation a couple weeks ago, I had a brainstorm: Could we get hospice help during the period of time Val is not actively seeking curative treatment? The radiation is an attempt to ease her breathing, but won’t cure her cancer. After radiation (and a possible bronchoscopy), if Val decides to pursue another trial drug, we would stop being eligible for hospice assistance, but could we enroll in hospice temporarily?

Turned out the answer was yes! So that has been another big project of the last couple weeks: finding a hospice agency, getting signed up, navigating a week of complicated insurance hurdles, facilitating communication among various medical professionals, and trying to get our first meetings set up with hospice nurses, social workers, aides, etc. etc. All of this was condensed and complicated by the fact that we were on the point of leaving for Montana.

The great news is that once we were under hospice’s wing, things started happening. Useful DME’s (durable medical equipment) appeared at the house: bed-tables, a wheelchair if we want one (but we already have mine), a nebulizer to help with Val’s breathing. Friendly tattooed guys showed up at odd hours with bubble-wrapped packets of medication refills. A nurse came to the house, checked Val’s vitals, listened to her priorities and desires, and offered advice, all in the comfort of our own environment. And a portable oxygen compressor arrived, at last! Just in time to accompany us to Montana for Val’s mother’s funeral.

That was when we decided that Val was too sick to board an airplane, and too sick to drive, and in a flurry of urgent activity (and a great deal of help from friends) we rented the RV so Val could try to keep her guts together and sleep as comfortably as possible on the twelve-hour drive. (The portable oxygen concentrator even plugs into the RV’s DC adapter!) I can report that sleeping in the back of the RV is like sleeping on a white-water raft, or possibly in a blender, but nonetheless, Val was able to stay horizontal, Brad kept us between the ditches, and we made the trip in more or less one piece.

And now we are in Montana with family, and I’ll fill you in about that in the next post.

Love,

Deborah