August 11th:Many things have happened in the 2 days since my last update and many things I hope I can remember to add here.
One of the many teams that works with Andy (nephrology, oncology, cardiology, internal medicine, palliative care, a psychiatrist, and once, a chaplin) came in to give us more news on Andy's situation.
They said that his kidneys are expelling too much protein at the moment, which they believe is due to "Minimal Change Disease" caused by the lymphoma. We can't treat that with the appropriate chemotherapy at the moment, it will be too harsh on his system, so steroids will be used in the interim.
They warned us that using prednisone will come with it's own side effects such as anxiety, predisposition for infection, blood clots and possible changes in sleep, mood and heart rhythm.
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One of the things you deal with being treated at a teaching hospital is the myriad of students who will sometimes accompany the doctors. These students mean no harm of course, and do their best as you can imagine, but it breaks my heart to see my husband used as Exhibit D while he is suffering.
"See how when you press the edema, the skin will stay pitted? See the raisin-ing of the skin? This is due to rapid fluid retention and depletion..."
Before the lymphoma biopsy, they made him fast for many hours - twice - then didn't put him under but used localized lidocaine, while a student dug around the lymph nodes in his groin for a tissue sample. Finally the doctor said, "I'll just do it." They took 7.
It also seems that every time I leave, a new team comes in with more news...
I stepped out for a tea while he took a nap and when I returned he said cardiology was back with more updates; his heart isn't as strong as they'd like it to be, so they'll introduce a new medication for that as well.
The Good News
Andy got to go back home under a program called "Hospital At Home" which is still technically in-patient, but he is in the comfort of his own bed! I was so excited I worked all night on a cover, then the next morning sped over to the hospital, packed all this stuff in room 839 and we patiently waited for the stretcher to take him to the ambulance. Our oncologist, who we love very much, Dr. Mariano, came to see him before we left.
I sped home, the ambulance beat me as you can assume, and eagerly got Andy set up in the living room.
Now, a nurse visits us twice a day, administers small packets of all his new medications, takes blood from his port, and gives him a once-over. He is monitored through an iPad, and I take his blood pressure and weight three times a day, like the techs do at the hospital. We also monitor all the fluids he takes in and relieves, to make sure his kidneys are working.
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August 12th:
It was our first full day back in our house in 10 days, which was nice, and I see hallmarks of how time passed while we were away. The date on the block calendar was incorrect, the left-overs in the fridge smelled awful, and the plant on the deck was definitely dead.
Andy is dealing with this as best he can, and for someone who never did so much as a joint in his life, his system is now being pummeled with more chemicals than one can fathom, and he is an absolute champion for bearing up under all that weight.
He uses oxygen now, which helps with periodic dizziness. He also finds it difficult to go up and down our stairs. I'm grateful we left the carpet on the stairs when we redid the floors. At first, we did it to save money and it just looked bizarre, but down the road it's pretty helpful.
* Andy's care will require our full attention, so I will temporarily quit my job as a freelance artist (just pause for a bit) to focus on him getting better.
Then, my wonderful sister Alexa came all the way from Los Angeles to visit, and we plan to try to see the Perseid meteor shower tonight.
Thank you to everyone!
To Our families, our church, our friends, our loved ones, our neighbors
recently: Elaine C., Mike S., Liz W., Patti R., Lindsay & Alex;
EVERYONE who gave to the GoFundMe
So soooo many more
We love you
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For those interested; more scenes of hospital-life:
as seen in the parking garage - this is not my car
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