Events, Episodes, and End Times
Whatever you call them, there are periods of time on the Cancer journey that are rougher than others. For us, The End came quickly and suddenly. I (Richard) am making this last post for my wife.The Beginning
Around the first of April my wife started experiencing more and more pain in her right hip area. She was only able to sleep in 20 minute to 1 hour stretches which is bad for REM sleep. And her appetite declined as well, nothing was appealing. Some days all she would eat would be 1-2 Ensures.From several recent scans and new ones, we determined that her body was fighting the cancer on her right pelvis crest, the top flange. It showed up as active on the scans. To fight the cancer, the bone was growing and that was pressing the nerve clusters that ran thru that area. That was our best working theory.
A course of 10 radiation treatments were finished on May 1. Some were very hard for her to get on the scan table because of the pain. Also because of traffic and distance I had to start her getting out the door at least 2 hours before the appointment. All the while, pain meds we tried were not working and she continued to not have good rest and not eat.
She lost her iPhone around this time. We did not know where, and she always had it on silent so no can find. That was a hassle because of her texts and Facebook and some music on the phone.
She was very loopy at this point, sometimes made no sense or rambled on about irrelevant little things. It was very hard to see her this way.
A small note about Insurance. Because I had drawn so much from my IRA (pre-59 1/2, paying the damn penalties), Oregon Healthcare said I had too much income and kicked us off. Paying for a new private Insurance started for us May 1. So I had to arrange all this while my wife was declining.
Hospital ER Visit
Monday 6am, I had dozed off and realized she had been on the toilet since 1am! When I was able to get her up, the left leg collapsed again. But I was better able to control her fall, and get her further out into the bathroom than last time. This time I called 911 and we took her to the ER. There they gave her an IV fluid and did some scans, but she was too claustrophobic to finish the MRI. Still, they were able to see that the pain was not in the spine. By around 3pm she was caught in a loop on the commode. Kept trying to pee, did, then wanted to pee again. Finally I had to stop her and get her back home. Doctor and I had decided that being at home was best option, rather than checking in. Looking back, that was probably a big mistake and I should have checked her into the hospital. But I knew she wanted to avoid that if possible.
Her IV port had somehow gotten kinked while in the ER, and so they instead had to give her a shot of Trecor, which is a non-opioid pain killer. Well that worked so well she SLEPT FOR 4 HOURS IN THE VAN sitting in the garage. We had a van door and the garage doors open and waited while she slept.
When she woke up, it was like she was back! She had slept so well, it was like a miracle. We got her inside back to bed, gave her an Ensure and even some food. And then the pain returned later that evening.
How do I know all this? My logs. I just grabbed a clipboard and papers and started writing down everything I gave her or what happened. Up until a week prior I thought she had been able to manage her medications like she had for the past 2 years, but now I realized I needed to step in and do that. Had to take the Ibuprofen and Acetaminophen out of her reach, and keep track of everything else especially the TKI drug, Eliquis, Thyroid meds, etc. Everything.
Hospice
On May 9th I was finally able to get her replacement phone. Check her texts again, return some calls for her.
On May 11th at 1am, we became unable to continue taking care of her. Fortunately her Oncologist was the doctor on-call with the practice and I explained how she was. He checked, but Home Health Services were not available for another 1-2 months! But he said Hospice was available to help, so we called them in.
At the time I rationalized that we would keep her there for 2 weeks, the pain would slowly diminish from the radiation treatment and we could get back to normal like our son's college graduation a month away.
The doctors and hospice knew differently, and the hospice nurse we had assigned to us was great at finally letting me come to the same conclusions. They would not IV Fluid, because that would flood her lungs and maybe the heart. And they would not do Methadone, because it took 5 days(!) to take effect. We worked so hard, every four hours to make sure she got the Oxycodone, but I don't think it was as effective as the others would have been, certainly not like the Trecor
I am not sure we controlled her pain well. That was one thing she had specifically asked me to do was to make sure she was not in pain, and I do not know if I and the medical staff failed her on that. I know that is a goal and everyone has asked me did she go peacefully. But I sidestep the answer, because the sad and hard truth is WE JUST DON'T KNOW!
A Lesson/Moral From This? Yes. Pre-plan your pain medications before, WAY BEFORE, entering Hospice. My wife had a long history of problems with different anesthesias not working effectively on her. You can give any medicine you already have in Hospice, so find your pain meds that work for you and stock up somehow. You have less choices within a Hospice care, so figure them out first.
Monday 6am, I had dozed off and realized she had been on the toilet since 1am! When I was able to get her up, the left leg collapsed again. But I was better able to control her fall, and get her further out into the bathroom than last time. This time I called 911 and we took her to the ER. There they gave her an IV fluid and did some scans, but she was too claustrophobic to finish the MRI. Still, they were able to see that the pain was not in the spine. By around 3pm she was caught in a loop on the commode. Kept trying to pee, did, then wanted to pee again. Finally I had to stop her and get her back home. Doctor and I had decided that being at home was best option, rather than checking in. Looking back, that was probably a big mistake and I should have checked her into the hospital. But I knew she wanted to avoid that if possible.
Her IV port had somehow gotten kinked while in the ER, and so they instead had to give her a shot of Trecor, which is a non-opioid pain killer. Well that worked so well she SLEPT FOR 4 HOURS IN THE VAN sitting in the garage. We had a van door and the garage doors open and waited while she slept.
When she woke up, it was like she was back! She had slept so well, it was like a miracle. We got her inside back to bed, gave her an Ensure and even some food. And then the pain returned later that evening.
How do I know all this? My logs. I just grabbed a clipboard and papers and started writing down everything I gave her or what happened. Up until a week prior I thought she had been able to manage her medications like she had for the past 2 years, but now I realized I needed to step in and do that. Had to take the Ibuprofen and Acetaminophen out of her reach, and keep track of everything else especially the TKI drug, Eliquis, Thyroid meds, etc. Everything.
Her IV port had somehow gotten kinked while in the ER, and so they instead had to give her a shot of Trecor, which is a non-opioid pain killer. Well that worked so well she SLEPT FOR 4 HOURS IN THE VAN sitting in the garage. We had a van door and the garage doors open and waited while she slept.
When she woke up, it was like she was back! She had slept so well, it was like a miracle. We got her inside back to bed, gave her an Ensure and even some food. And then the pain returned later that evening.
How do I know all this? My logs. I just grabbed a clipboard and papers and started writing down everything I gave her or what happened. Up until a week prior I thought she had been able to manage her medications like she had for the past 2 years, but now I realized I needed to step in and do that. Had to take the Ibuprofen and Acetaminophen out of her reach, and keep track of everything else especially the TKI drug, Eliquis, Thyroid meds, etc. Everything.
Hospice
On May 9th I was finally able to get her replacement phone. Check her texts again, return some calls for her.
On May 11th at 1am, we became unable to continue taking care of her. Fortunately her Oncologist was the doctor on-call with the practice and I explained how she was. He checked, but Home Health Services were not available for another 1-2 months! But he said Hospice was available to help, so we called them in.
At the time I rationalized that we would keep her there for 2 weeks, the pain would slowly diminish from the radiation treatment and we could get back to normal like our son's college graduation a month away.
The doctors and hospice knew differently, and the hospice nurse we had assigned to us was great at finally letting me come to the same conclusions. They would not IV Fluid, because that would flood her lungs and maybe the heart. And they would not do Methadone, because it took 5 days(!) to take effect. We worked so hard, every four hours to make sure she got the Oxycodone, but I don't think it was as effective as the others would have been, certainly not like the Trecor
I am not sure we controlled her pain well. That was one thing she had specifically asked me to do was to make sure she was not in pain, and I do not know if I and the medical staff failed her on that. I know that is a goal and everyone has asked me did she go peacefully. But I sidestep the answer, because the sad and hard truth is WE JUST DON'T KNOW!
During Hospice
The teachers at her school wanted to come and sing to her outside the house. Fearing the logistical nightmare of parking and people, I suggested they do a video instead. Which they did and then I could play it to her on the phone and iPad.Other friends and family did the same. Or I could put them on Speakerphone and they could talk and she could respond a little, often a grunt or so. Her aunt who lives in Spokane we were able to get on the phone a few times, and other friends in Minnesota too.
Technology like Facebook and Mobile Phones made it so much easier to update and stay in touch.
Also, people want to bring food. A meal train we had two years prior had been such a blessing when she was in the ICU and rehab. This time though we had a full pantry and did not want to deal with such a pile and dishes and such. We declined all politely, and that was the right choice. But know that if people want to feed you, that's okay!
The End
May 23, 3:02pm. The kids had been singing to her from song notebooks she put together of works they all enjoyed. My older sister came and got me down in my office, where I was doing some bills and paperwork.As they finished "In The Bleak Midwinter", she took her last breath. I could only hold her and kiss her, the kids and I were so stunned and shocked. They had all sung that song and others last year, so I was able to grab the iPad and start playing those videos to help her keep moving on. And us. No one spoke for a while.
My sister, bless her, was able to call Hospice for us. Just the day before I had arranged her cremation with a funeral home, and they were able to show up early in the evening and take her body. They paused for us for a moment on the front porch. Hospice left too, and we started cleaning.
Our eldest son was taking the sheets off the bed, when he found her lost Phone! Sometime in her loopy phase she had stashed it between the mattress and the springs of her hospital bed! It made us laugh a little.
Postlude
Where to host the service? Program? Who will speak? What songs to play? The kids and I have been pulling together all of this. It's coming June 8 and we need to be ready and will be, whatever we can. Pam had put some of this together, on post-it notes scattered around. She had long told me various bits for her service, but now I have to get it all done in time some of it from memory, some of it how I want to let others know my memories.Our eldest son and his girlfriend went back to finish up their college, getting ready for graduation this June! The girls have been reviewing songs to play. My son has been helping with some fixes on our rental house.
I've called our Insurance, Lawyer. Got the ashes and 7 Death Certificates back. Refilled the dog's pills. Got the vans front wheel bearings fixed. Met friends for lunch. Got a long overdue massage. Witnessed this years 8th Grade graduation of students my wife taught.
The first week I see now it was like I was hungover. The stress, sleep I needed, my body has been wracked with waves of emotions. We will never forget her, she lives in us as we move forward. Or to paraphrase the Beatles: Ob-La-Di, Ob-La-Da life goes on Ma!
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