A new treatment plan

I am Larry, Karen's husband, and the reason I am now writing this is Karen is no longer with us. I will pick things up where Karen left off because the story needs to be told. 

First thing  the next morning a physical therapist came to figure out if she could walk, she was a little wobbly but able to move. Mcduff's assistant stopped by to see how she was doing and that he would be around later in the day.Assistant seemed to think that radiation therapy would be recommended along with immunotherapy, the hospital doc prescribed not quite George for pain as needed. Next in is radiation guy who has looked at all the tests and said we start radiation tomorrow and that she would be in the hospital for a couple more days. A side effect of the radiation will be a sore throat so soft food only, how exciting.

McDuff came by to talk about the immunotherapy pill which was developed especially for the Met exon 14 skipping mutation. The pill is taken twice a day at a cost of $11,000 a month. The co pay was $2,200 a month, a lot of money for living off of social security, fortunately there are grants to help you out especially if you have a rare mutation. It’s been decided to start the pill after radiation. Karen got to take a shower that evening, felt great.

Friday morning Karen was taken to the cancer center for mapping for the treatment, EMT’s are used for transport from building to building. It took the radiation tech about twenty minutes to do the mapping, then another trip back to the room to wait for the treatment later in the day. You guessed it back over to the cancer center for  the first treatment, this time however one of the transportation techs took Karen and they got lost trying to get to the cancer center, they ended up in a warehouse, retraced some steps and finally made it to the cancer center. On the way back they found the same warehouse.  All this time they have been talking about removing the catheter and doing a test run so that Karen could come home. As usual all the docs have to sign off and there is always that one, Karen had dinner and waited, we were finally released at 9:00 at night. We had to be back for radiation treatment at 11am on a Saturday which is a rare occurrence. Sunday there were no treatments but Karen was pretty  uncomfortable she made notes about pee, poop and pain meds which I am not going to get into.

Monday thru Thursday we did two treatments a day one in the early morning and one late afternoon, we did a lot of traveling in those four days. All in all it was ten radiation treatments. Radiation doc said it could take up to six weeks for the effects of the radiation to subside. Karen feels pretty miserable at this point. Friday started the targeted therapy treatment. Some of the side effects were Edema in her feet, constipation (Mira Lax is your best friend) and loss of appetite. She experienced all of these. At this point Karen was still mobile with the use of a cane and a walker, we used a wheel chair at her appointments cause she was pretty darn slow.

The next day Karen started the new targeted therapy. The pill was designed to target the met exon 14 skipping gene only. Again the side effects Edema, constipation, loss of appetite. An interesting point is the pill came from a special pharmacy where the pharmacist was in contact with Karen on a regular basis to see how she felt and check on how her dosages were affecting her and were there any problems. McDuff wanted labs every three weeks to monitor progress, followed up by an office visit with McDuff. Again lots of traveling.

Had an appointment With Lung guy, everything looked good, and found out he was changing organizations, offices, and all forms of communications so of course making a February appointment was challenging.

We had an appointment in November with brain guy #2 after of course another MRI, and golly gee wiz the lesions that had been blasted were shrinking. Unfortunately another small lesion was discovered, but rather than blasting it they decided to let the targeted therapy do the nasty deed.

Life actually started to be kind of a routine, we were getting out and about ( a little) like going to watch grand kids soccer practice. In November Karen saw her neurologist all looked good for him, and see ya in a year. Also in Nov. we saw Brain Guy for a six week follow up for the radiation marathon, he agreed with Brain Guy #2 to let the targeted therapy do the work, let McDuff do all the work.

November 30 saw her PCP, nothing new to report here. Had a CT scan with contrast requiring a barium smoothie each time Karen had this she would feel nauseous, this time she got sick, and then comes the bone scan, piece of cake. Karen saw McDuff December 6th, everything looks good see you in four weeks. Had another MRI in prep for meeting with Brain Guy #2, results, everything is shrinking and the new little guy disappeared, we’ll do this again in three months.

January 3rd saw McDuff, the bone scan looked good, but the CT and MRI had mixed readings. The docs are thinking there could be toxicity from the pill. Stop taking it for a week and see if things get better. After a week it was decided to resume but at a lower dosage. Karen was feeling a little better. They now want CT scans every month but no contrast. Another MRI and a meeting with brain guy #2, everything looks good.

February 2nd we found where Lung Guy moved, for his part everything was looking good he suggested that Karen take a shot of albuterol before bed and before going out. Karen was complaining about being out of breath when exerting.

March 3rd Karen had her wellness visit with her PCP, everything is stable for now. Passed her cognitive test, still had her wits about her.

March 6th saw McDuff, edema and neuropathy decrease. This is a good sign. Get blood work and a CT scan in three weeks.

March 10th Karen and I stopped by our favorite meat store to pick up a corned beef so that we could have corned beef and cabbage on St.Patrick's day I went out and got a head of cabbage later that day. On March 16 Karen got me up complaining about incredible back pain and she couldn’t pee, been there done that back to the ER. The only real difference here is our dog decided that this morning was a good time to have diarrhea and managed to make quite a few messes throughout the house. I went out to start the car, you guessed it, no go. I put out a call to the kids about my dilemma. I managed to get Karen into my pickup truck and on we went to the ER yet again. Side note, my daughter came to the house and cleaned the rugs, my son in law got a new battery for the car and my son came down and took care of the dog, quite a day already. There was another lengthy stay in th ER and bunch more tests and pain meds Karen was finally able to pee with no catheter and it was decided to stop this targeted therapy, wait a while and then start a different therapy that works with the immune  system to combat the mutant gene. This is much like chemotherapy in that it’s a infusion, Oh and if you were wondering about the corned beef, Karen sent me out to the store to buy more corned beef so she could make corned beef hash and can it. I picked up three more making it about 14 lbs total. On the 18th Karen was released. 

In this hospital stay for the first time she had a roommate, who had been there for two months, with only a curtain between them there were not secrets in her personal life and her woes and which kids she loved an the ones she hated. Karen was closest to the door and had no idea if it was day or night. Karen was startled awake 2AM, thought it was 2PM and panicked because I wasn’t there. She called me, no answer, more panic. Called my daughter, no answer, more panic, then called our son (a night owl) who answered, she started babbling , he cut her off and said “you do know it’s 2 in the morning” - Oh sorry. It didn’t happen again.

April 6th again the horrible pain, can’t pee. This time I called the squad, by this point she was in the wheel chair, they transported her to the hospital, this time we broke our ER record at 29 hours in the ER. Karen ended up with a Foley catheter and a lot of pain meds intravenously her appetite is really off the mark. Karen spent a week in the hospital and we celebrated Easter in her hospital room. We staged an Easter egg hunt for the grands in her room. 

On the 17th Karen was sent to a rehab facility since she was still on a IV and a Foley. We spent her birthday in the rehab facility, brought in the grands, closed the door and had a party. The rehab facility was interesting in that they were terribly short staffed and the staff they had were quite interesting. Communication was unique in its own way. The Bahamian nurse trying to talk to the Ukrainian aide with their accents trying to understand each other was quite entertaining. Karen did not like the Russian aide (aka Mr. Wedgie), he would lift her by grabbing hold of her depends, giving her a wedgie every time. No one could understand a word he said. Whenever he sat down he would take his shoes off, very odd.

In the three weeks that Karen was in rehab she saw the doctor twice and the nurse practitioner three times. With the transfer from the hospital to the rehab center the meds got screwed up so Karen didn’t have any pain meds for two days. Karen was having a rough go about it so I snuck in some of the good stuff we had at home and I saved the day. Oh I forgot to mention that the fancy hospital bed was broken. She always looked like she was heading down hill, I commandeered a number of pillows and wedged the mattress up. What a ridiculous place. Fortunately Karen didn’t have much of an appetite, because the food wasn’t much to speak about either.

The first of May Medicare and our supplemental insurance denied extended coverage, of course we appealed and it was denied again. Not much choice Karen was coming home. So the next day my son in law and I went to the lumber yard and bought what we thought was enough material to build a ramp. We were close. Next day figuring out the pitch I decided the old steps had to go, that made things easier to figure out. A couple of my neighbors came over and between the four of us we engineered this thing. First part of May and It’s 85 degrees, and we're getting sunburnt. We did not finish, wore out and needed more materials. The next morning we were greeted with snow showers and freezing cold temperatures, but we persevered and got it finished. It wasn’t pretty but it was plenty sturdy, we engineered and built this thing in 24 hours. We were ready for Karen to come home.

In the week that we were getting the house prepped Karen decided she needed one of those fancy lift chairs anybody who knows Karen, knows plain Jane lift chairs won’t do. Hers had a usb connection, a vibrating massage function and heating pad, if it had wheels she could have driven it. They also had to see if the catheter could be removed, an interesting test, take it out and see if you can pee, if you can’t it goes back in. She was able to pee, yay!

Since 2020 when Karen had her diagnosis, I have been there to take care of her, transport her, and get whatever she needed. She is still pretty mobile using a cane, then a walker. We qualified for in-home nursing care and physical therapy. The unfortunate thing is there are not actually enough people to perform these tasks. I became the primary caregiver. When she came home she was totally wheelchair bound, hence the ramp. Karen was no longer able to go up or down the steps so I had to convert our downstairs guest bedroom into a wheelchair accessible room, same with the bathroom. I had a couple of walkie talkies that we used so she could call me in the middle of the night when she needed assistance. They worked ok in the beginning but we figured out the cell phones worked just as well and didn’t cost us a fortune in batteries. We were actually getting into kind of a routine. We had a few hiccups, things like while trying to lift her she would have a minor seizure and just go limp. I am no longer Charles Atlas and could not pick her up, so I called our daughter she came over and we got her back into the chair. From that point on our daughter took care of showers. I was having my own issues so lifting was a difficult task.

We got Karen signed up for outpatient physical therapy and they are doing a great job with her,she was getting some strength back. We were getting out for CT scans and bone scans (everything looked good, can’t figure out the pain thing), and things seemed to be ok with the infusions. All these little trips just completely wipe her out, consequently she sleeps a lot now. 

Our sister in law came to stay with us for awhile, she helped out with the house and trying to come up with foods for a very unreliable appetite. My biggest mistake was if she liked something I would stock up on it, of course she would never eat it again. I have a bunch of stuff I’m working my way through. It was great having sis here. She really helped with our spirits. Alas she had to leave, you know, Grand kid things.

Karen has lost her voice, she speaks in a raspy muffled almost unintelligible speech. She is very frustrated. Been about a week without things getting any better, and swallowing pills or anything for that matter cause her to regurgitate so it’s time to go see throat guy. Again with the scope down the throat to discover her left larynx no longer works, this kind of indicates a nerve problem. Gee could that be back related too? He can do a surgical procedure to fix it, but prefers to wait and see if it cures itself. I guess nerves are funny that way. Another CT and bone scan looks good.

On May 31st I was getting Karen into the bathroom for her daily when she had a seizure lasting about four minutes. This is very concerning. I got her comfortable and called the paramedics, they too were concerned, off to the ER, after another long stay in the ER and every test in the book, it came down to the MRI which took two and a half hours. In the meantime the doctors went ahead and put in a Foley again. I forgot to mention every time Karen had a catheter she got a UTI.

After another lengthy ER stay we finally got to a room. We got the results from the MRI and it showed spots in the fluid of her spinal column, her brain stem, and the fluid surrounding the brain, all of it cancer. I will never forget the look she gave me as she said hospice. We were moved into the hospice wing of the hospital. Immediately, all Karen's drugs were changed, no more infusions, comfort drugs only. They started her on George and then some. We spent the weekend at the hospice ward as they  adjusted meds and made preparations for Karen to come home

Karen arrived at the house at about 11 in the morning. None of the hospice stuff had arrived yet, so we put her in her fancy chair. My daughter and I spent some time preparing our back porch for the hospital bed and other stuff, this was at Karen’s request, she loved our backyard, in fact that is the reason we bought this house. she wanted to see the yard.

The first to arrive was the chaplain and the social worker, explaining what was happening, then the charge nurse came explaining what all the nurses did, then we went through all of Karen’s meds and disposed of all the drugs she used to take and I was instructed about delivering George and super George. I had to keep precise records. They soon left and we were awaiting for our nurse and the aide. 

To begin with, the nurse would come by two days a week and the aid would be by two different days a week, we were also given a phone number to call for anything, we were not to call 911 for any reason. The nurse checks on Karen’s well being, and checks to see what supplies we needed. The aid took over the duties of bathing Karen.

June 6th Karen’s brother and sisters came to visit. This was a good thing, though she couldn’t talk very loud she really enjoyed the visit. Anything like this would wear her out and she would have to sleep. Most of Karen’s meds were in liquid form but some I had to crush and make a slurry for her to be able to get down. As things progressed she no longer could get out of the bed,and she had pretty much quit eating. Towards the end of June the doctors increased George and really increased super George, by this time Karen is no longer speaking and sleeps all of the time. As her primary caregiver I was on call 24/7, I learned to sleep with one eye open. When Karen came back home I put a cot on the porch so I could be closer, setting my alarm so I could do meds on time, taking care of her bodily needs . This by far is the hardest thing I have ever done.

I can only give the highest praise to the hospice team, they are a special type of people.

On July 1st she was no longer with us but her body was still functioning, all that was left was the brain stem forcing her to breath it is a sound you cannot forget. There were fireworks going off all around us for the Fourth of July. She passed in the early morning of July 2nd, so you could say she went out with a bang.

This is the last thing she wrote on June 26th:

Hopefully not last not last. May take awhile. Time is fleeting like the time warp. Probably lots of errors and random thoughts in and out. I may or may not try to fix. None may make sense only to me. Still want to foist my words on everyone as musch as i can. I still mostly remember the day, but have to look at occasionally to remember the date. Sleeping a lot as. Much as George allows me to. Ms. Fuzzy is my best friend. She’s ok. We get along well. Lots of conversation between us and lovely naps. Speaking of naps…