Hi all,
I feel like my mind has been spun around and now is facing in a totally new direction.
This past week, my 98-year old dad completed his radiation treatment. Things felt very hopeful. His pain level has been way down ever since he was diagnosed with the cancer just over a month ago. The drugs and treatment have been doing a good job with that. He mostly been sleeping, but recently he's been doing better and he's been getting around, sometimes even without his walker.
My dad was mowing his own lawn a year and a half ago, using a mower that even I struggled to start and push. But he slowed down a lot and then became dependent on his walker since mid-January when he became constipated and very weak. Since he started getting better recently, he has tried to do some crazy things like go out driving. Fortunately, he hasn't driven since early January and the car battery was dead.
Then on Friday afternoon, the hospice intake nurse came to visit for the first time. Coincidentally, my dad's appetite had dropped off dramatically that day. He'd had struggled to eat at breakfast and then hardly touched his lunch. Up until then, he'd been eating well. His low point on weight was 87 lbs in early March, but with his improved appetite, his weight has come up to 95 lbs.
The hospice intake nurse spoke to me about juicing, and with my dad's continued lack of appetite, I decided to spend $500 yesterday morning to buy a juicer. I had been calling the hospice hotline every day since he started on hospice care on Friday. It's barely been 4 days.
Then yesterday morning, my dad's case manager and regular hospice nurse (same person doing two functions) came for her first visit. After assessing him, she said that it looked like my dad had started the dying process. She said instead of waking him up to eat, I should just let him sleep....only giving him food when he wants it. She mentioned one patient she had who slept for 23 hours and was up only one hour for getting nourishment.
Then in the afternoon, I had to take my dad to Kaiser to get his blood draw. We are meeting with his oncologist today for the second time. He had to get his test to see where we are on his PSA.
My dad got an MRI on 3/9 to figure out what was causing his lower back pain that had been bothering him for a while. Instead of some pinched nerve diagnosis, that same afternoon, my dad's primary care doctor called me to say that the MRI showed metastasis on his spine. Blood tests were done and showed that his PSA level was 3395 - let's just call it 3400. With the diagnosis, the doctor prescribed oxycodone for his pain.
In our initial appointment (video) with my dad's oncologist on 3/17, she expressed surprise that my dad was still able to get around on his walker. So she wanted to start treatment immediately. An hour later, he was getting his lupron injection (lupron wasn't available, so they used the substitute).
On 3/21 we had our initial visit with my dad's radiation oncologist. Then he got the CT scan and simulation. On 3/25 his radiation treatment started (so fast! - I think it took at least a full week between my simulation and first treatment when I got this done back in 2017). My dad received 10 treatments, and the last one was done 4/6. I understood that should he survive, my dad would start feeling more energy in 2-3 months.
On 3/30, I messaged my dad's primary care doctor, asking that with my dad receiving palliative radiation, would he eligible for hospice care? She deferred this decision to my dad's oncologist. So when I inquired with the oncologist, she responded:
"Your father may be qualify for hospice care, given his age and disease burden.
However he just started treatment, I would not like to give up that easily.
Please give him at least 2 months, before we rush into a quick decision.
However if you need additional support, we could start hospice care now but continue with all treatmen, if he improves, we can cancel hospice care, if he continue to decline, then continue hospice care.
Do you want to start hospice care now or wait for a few more months?"
I responded:
I would like to start hospice care now, and we can stop it later, if it is warranted. I would appreciate the support that hospice offers. I learned about hospice when I was my mother's primary caregiver. In the end, she had hospice care for less than 1 week, and I did regret that we didn't get it sooner. In her case, it took longer as I wanted a nurse that spoke Japanese.
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So now, I am glad that I made the decision to start my dad on hospice care. It seemed like it might be premature as his oncologist suggested, but in fact, it seems like we may have started receiving care just in the nick of time. I still hope that my dad may make some miraculous recovery, but I am not expecting it. I am choosing to accept the advice of my dad's hospice care manager and just let him sleep, and not wake him up to eat. I have some mixed feelings about this, but it seems like the right thing to do now.
My dad is not a verbal or expressive person (unlike my mother, who managed to handle about 80% of the verbal communication in our family when she was alive and well). He mostly corresponds with friends and family through his annual Christmas cards. So I haven't notified these mostly far flung people of my dad's condition....except for my retired surgeon cousin in Japan, who I've been in contact with since my dad became constipated on 1/12/22. I've been telling some of my closer friends about my dad, and also my small support groups at church.
Last night, I started calling some of my dad's distant relatives (like my cousins in Hawaii and Oregon), to inform them that my dad has stage-4 prostate cancer and that I've started him on hospice care. My dad doesn't have any more living siblings. I've decided to ask folks not to call, but instead ask them to send him cards and letters. I think being on the phone would take up too much of my dad's energy. Whenever someone calls, he hardly says anything, just letting the other person do all the talking.
I plan to make some more calls today to my dad's friends. I still want to volunteer this morning at one of the local soup kitchens I like to help at. Then there is a place called the Recovery Cafe that I recently joined that I want to take a class at. Then we have the video appointment with my dad's oncologist later in the afternoon. There is also a meeting tonight for San Jose Nikkei Resisters. It's a relatively new social justice organization that I joined in 2020. I want to bake some pecan bars today to take to the meeting. So even though my dad is my top priority now, I am still making time for myself to do the things I like to do.
We'll see how things go...just try to take it day by day.
1) My closet library branch is about a mile away and I ordered a couple of Ira Byock's books. They have Dying Well, but not the second one you mentioned...they do have another one. I also ordered a couple of other books on dying that came up on the same search. I liked Being Mortal by Atul Gawande. I read that a few years ago, when my dad was still doing fine. My retired surgeon cousin in Japan who just turned 74 today, suggested that both my dad and I read it. I did, but my dad wasn't interested. I have been meaning to re-read it, but I already have too many books that I am reading, that I have not been able to get to it. Honestly, I just haven't found time to read much, period. (2) I copied and pasted what you wrote and have emailed it out. Thanks again. God bless you.
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