Yet More Bad News

So, more unpleasant news I’m afraid. This is Mike writing a very long post for Robin who just can’t.

The 3 months since our last blog post in January have not been good.

We’ve told you about the Pazopanib. (The very expensive oral chemo drug.) We were approved for the free program, however with paperwork snafus, delays due to what COVID has done to so many companies with people working from home, and just plain inertia getting a committee to meet and approve the application, the drug did not get shipped to us until just two weeks ago. (More about this drug later.)

Because of the delays, after several weeks, our Oncologist tried another, older chemo named Vinorelbine (Navelbine) which has shown some effect on the type of cancer Robin has. (I’ve seen the abstract of one of the case studies myself.)

Navelbine is administered by IV once a week for three weeks in a row and then a week off for several rounds. This drug can cause nausea and diarrhea, and Robin has had some pretty bad bouts of them.

After the first infusion, on Monday, March 1 – less than 72 hours before her second infusion, both Robin and I were given our first dose of the Moderna COVID vaccine. The vaccine’s effects were mild for me, more tough for Robin. In addition to the gastro-intestinal problems from the chemo, her fever went up, she was extremely short of breath, and she had muscular weakness that was truly frightening. We consulted with the online nurse at BCBS and with the Oncology staff at U of M who told us to call 911 and get to the local Emergency Room. There they treated Robin’s fever and nausea. They ran blood tests, consulted with our Oncologist, and found that her potassium was low. They treated her with potassium chloride, made us promise to talk with our Doctors and let us go home.

Things were fairly good for a few days, but then Robin began to show the symptoms again. This time instead of waiting until she couldn’t move, we got her out of the house, into the car, and I drove her to the U of M Emergency Room.

After much testing and debate they decided to admit her. She was there nearly a week while they tested, examined, and treated her with supplemental oxygen, fluids, potassium, anti-nausea drugs, antibiotics, etc.

We came home with prescriptions for all of that and had a visiting nurse and physical therapist as well. The supplemental oxygen has been a trial; tubing all over the floor and getting in the way when we move Robin from room to room. I’ve been providing the bulk of the home health support, but even as careful as we have been, Robin tripped and fell which bruised her badly and scared us both half to death. (Nothing more than the bruises, but it took us more than 20 minutes to get her off the floor and into her chair.)

We have had two video visits with the Oncologist. At the last one, we were told not to start the Pazopanib given Robin’s current weakened state. When I asked directly, he told us that we should probably arrange for home hospice care.

So, that is where we are now. We have spoken the Angela Hospice here in Michigan who will be sending out a nurse to evaluate Robin’s condition and we’ll be setting a schedule for a different visiting nurse and a medical aide. There may be other services as well. Also, staff will be on call 24/7 if needed. We got a hospital bed on Tuesday (4/13) and put it in the living room so that Robin can sit up to talk and eat without having to use her walker to move around the house.

Robin continues to decline, and her lung function is very low. We were at the maximum setting for Oxygen flow provided by the concentrator we had here. The hospice has given us better equipment which supplies more oxygen.

Many of you who read this blog already know some, or even most of this. For some of you this will be new. I am writing this to let you all know exactly what is going on. I (we) need you to know that both, Robin and I, are in good spirits, and that we are facing this together. We are more grateful than we can possibly say for the love and support you have and continue to give us.

Some of you have asked if there is anything you can do for us. Robin says that she hopes to pass over peacefully in her sleep. So, work and pray for that and for her comfort.

– Michael Short for Robin Wood