Sometimes The Medicine Doesn’t Help – Keytruda

Warning – Long. Very, very long. And if I am truthful, a selfish posting. I need to get this out because I’m angry and this outlet helps me be less angry. If I write, I can let go. And I need to let go.

You know how the big pharma companies give a whole list of things that can go wrong if you use their meds?  Some are so tiny of a risk,  you just dismiss it?  There is a reason for this, sometimes the meds have an alternate effect and can make things so much worse.  But you never think it will happen to someone you love,  until it does.

My mother’s health has been on the decline for many years.   She was diagnosed several years ago with cerebral small vessel disease.  This disease slowly hardens the small vessels in your brain and causes you to lose your memories.   It’s a lot like dementia and Alzheimers, but it can’t be treated.   When they scanned her brain they also found she had a small, very slow growing, tumor.  But it was of no concern since the small vessel disease would progress faster and become the bigger problem. So we thought.

She was a survivor of breast cancer, twice.  She was always able to come out on top “cancer free” until late 2018.  She wasn’t feeling well, she had a cough she couldn’t shake and they thought she may have pneumonia.  They sent her to the ER for a chest x-ray.

During the routine chest xray, they noticed a spot and referred her to pulmonology.  She had been a smoker in her younger years, and had smoked all the way up to when my baby brother was born in 1980.  So it wasn’t surprising that they were seeing something but she kept telling us that they thought she had pneumonia.  She didn’t remember or understand it wasn’t pneumonia and she was going to these medical tests and appointments alone.  She had always been medically private, often we were not aware of overnight visits or tests until after the fact. 

Her memory was always challenging but it was becoming much worse and I am not sure if she kept it a secret intentionally or if she thought we knew about the spot.  Either way, there was conflicting information until Spring of 2019 when I got a photo of an IV in her arm and called to ask what was going on.  She told me she was suppose to have a test done the next day.  I pieced the sparse information together and called her primary physician to find out she was suppose to have a lung biopsy the following day.  She called me the next day and said they decided to wait another 6 months because the spot was too small.  They were going to monitor it and see if it changed.

Every once in awhile, in hindsight, you know you should have acted on a feeling.  But by the time you realize the shoulda, woulda, coulda moment, it’s gone.   This was my first shoulda, woulda, coulda missed moment.  Could I have altered the end result?  I’m not sure, but I do know I didn’t try, I didn’t push at her because I was tired or stressed or didn’t want to fight with her.  Now I’m angry.  Angry at myself, angry at her.  Just angry.

She ended up having 2 biopsies one for each lung at different times.  By the time testing was completed, there were enough spots in both lungs that options were limited.  She was diagnosed with lung adenocarcinoma stage 1B. She did a round of radiation but it didn’t really help.  Chemo was not an option, nor was surgery because both lungs were affected.  The doctors started talking to her about immunotherapy.  She was tested for markers to see if she was a candidate.

This is where my second shoulda, woulda, coulda moment came in.  Again, I hesitated because I didn’t want to rock the boat.  I wanted answers but didn’t want to be the bitchy sister or daughter who was just wanting to stick her nose in.   But I asked enough questions to do research on immunotherapy and decide I was very uneasy about it.  I mentioned that to her,  I talked about it with other family members and I was left feeling like I was overreacting.   Never let yourself feel like that.  If you really are uneasy about something…  Push.

The markers came back indicating she was a candidate for Keytruda (pembrolizumab) immunotherapy.  I began researching Keytruda.  I read trial notes, studies, and medical journal articles.  The benefit was so small compared to the expense and treatment process.  It sounded like she would, at best, add another year to her lifespan.  There were very few cases that had added up to 5 years to the lifespan.  Some trials had been halted in 2017 or 18 because death rates on the treatment were higher than they should be. 

Some of the side effects were scary too.  Most patients felt like they always had the flu.   What was the point of extending your life if you were always feeling tired and flu-like?  And this was not a treatment that would stop after 6 cycles, or 12, or 54.  You would be on it until your last breath.   If you quit the drug, the cancer would start growing again.  I talked to my brothers about it, and we came to the agreement that it still should be her decision.    Shoulda, woulda, coulda.  Push…  I didn’t.  Not hard enough. I should have talked (and argued) with her about it.

She had her first treatment in April 2020.  I was concerned at this point that she was going to the hospital for an IV drip during the onset of Covid 19. I expressed my concern to her doctor and was assured precautions were in place. It turns out Covid 19 wasn’t going to be a problem, but Keytruda would be a huge problem.

She was scheduled for another treatment in early May, she missed the appointment which was probably a blessing in disguise. By around the 13th of May she started having problems with strength in her legs. She had called my brother several times to help her move around her house and had fallen. I talked to her on the 15th, things were getting progressively worse. I told her to call her primary doctor or to go to the ER that day, not to wait any longer. I stressed that she needed to find out what was going on. She saw her primary doctor that afternoon, they ran a few tests and sent her home thinking she was anemic.

On Saturday the 16th, we made a spur of the moment decision and drove to surprise my daughter for her graduation from nursing school and to check on mom. It is about a 4 hour drive. After my seeing my daughter and spending a short time with her, we headed to Mom’s house.

My brother had just helped her back to bed, she couldn’t move her legs much at all. She said she felt worse than the day before and her arms felt funny now. We helped her sit up in bed, I helped her to the restroom, and suggested we go to the ER. She said she thought that was a good idea.

We dropped her off outside the ER, because of Covid 19, even with her memory issues they wouldn’t let one of us accompany her. We had no other option but to drive home. There would be no visiting and we could wait for updates by phone anywhere. That was one of the hardest things to do, it felt like I was abandoning her.

After running some tests, they moved her to the cardiac floor. They thought she may have had a heart attack and expressed concern for her confusion and that she was living alone. They focused on her heart and liver since she had elevated liver enzymes and her blood pressure had spiked. On Monday the 18th, they did an angiogram and stented her right coronary artery, which was 80% blocked. They were already talking about discharge even though they knew she lived alone and had problems with memory and confusion. I convinced them to keep her as long as they could until we could come up with a plan to move her to my place.

Tuesday she was still experiencing weakness all over her body and it was gradually worsening. There was still concern about her liver numbers being high, more tests were done – MRI’s of her liver and brain were done, I was told her BP was “out of control”. During conversations with her various doctors, comments were starting to pop up about the weakness maybe being contributed to the immunotherapy (Keytruda) treatment. So I started researching the complications that could arise from Keytruda.

Wednesday they started medicating her for a conditon called Myasthenia Gravis, which they felt had been induced by the Keytruda treatment she had had the month before. They were also receiving various other medications for myositis trying to cover all the bases while determining the condtion. She endured a spinal tap and due to a brain MRI that revealed the growing and necrotic mass we knew about, there were conversations about doing a biopsy of her brain. I felt like they were grasping at straws to determine the cause of the weakness.

Thursday afternoon, she called me. She was upset and confused about all the paperwork “they keep shoving in front of me to sign”, I explained to her that is was the testing they were doing and consent for treatment she had agreed to. They were going to start plasmapheresis to try to filter out the antibodies that were attacking her immune system. We were told it was very similar to kidney dialysis and she would need a port put in for it. I explained all this and asked her if that was what she wanted. She said if it could get her home and walking again that was what she wanted. We talked about moving in with me and she was finally content with that idea, moving to live with us had been a struggle for quite a long time. I told her if she was uneasy about signing anything to call me first and I would explain it and talk to the nurse or doctor. We chatted a bit more until she had calmed and felt better about things and then we said I love you and goodbye. This was the last time I would hear her voice while she was living.

Just after midnight Thursday night, early Friday morning I was added to a conference call with my brothers and the doctor. She was struggling to breathe and they were going to intubate. It was at this point we figured out they had never attached her DNR and Heath POA to her chart, it had been sent to the cardiac floor when she was there (she had been moved to another floor), They halted the procedure while I read the DNR and my brothers and I discussed what to do. We asked a couple questions about what the outcome could be with the plasmapheresis and were told she could resume a “normal” lifestyle if it were successful. We consented to the intubation since her living will had stated an “irreversible terminal condition” this did not apply. I still struggle with this decision, but it did allow precious time with her later, which we all needed.

By Friday the 22nd of May, they had decided Keytruda was indeed the culprit to the Myasthenia Gravis and the dialysis line was placed on Saturday. She remained vented since there was no success in breathing on her own. She was able to communicate using hand gestures or writing in the palm of a hand and would frequently ask for the vent to come out. By Sunday evening, she was up sitting in a chair and had already had 2 plasma treatments, she passed the vent test but they opted to leave it in until there were sure she could tolerate breathing on her own and they wouldn’t have to re-introduce the vent. It seemed things may be looking up.

By Monday afternoon, that had changed. She had failed the vent test that day and her anxiety at having the vent skyrocketed. She kept asking for it to be removed and when it was explained she would pass without it, she would indicate that was fine and would shrug her shoulders. Her shrugging her shoulders was something she did often when she was indicating she was fine with the outcome. She tried to remove the vent herself on a couple of occasions and they had to restrain her.

She had her third treatment on Monday, Tuesday they went to an every other day schedule. She had 2 treatments left, but there wasn’t much positive progress, I had gotten the feeling we should have been seeing an upswing by now. The doctors didn’t seem as optimistic as they had been. She was still vented and weak, she couldn’t use her arms or legs much and her left side of her face and left eye had started to droop.

Wednesday, I started to plan for a conference call with all the doctors in her care, family liason, and my brothers. I asked them to stop the plasma exchange until after we had a conference call. We all needed to know what was the long term plan, how she was feeling, when could someone see her to assess the situation? Damn Covid 19 had made it so we couldn’t get a “read” on the situation and when I had been told she shrugged at the idea of death, I knew that venting her that night might have been a mistake. I started questioning everything, I was scared I didn’t do what she had intended and wanted. I was the one who was suppose to know. I was afraid she was mad at me for allowing it to happen, but I couldn’t even see her to find out.

Thursday morning we had the conference call. There were 10-12 hospital employees on the call. Her doctors, nurses, residents and the liason/spiritual team I had been working with were all present. The purpose of the conference call had been to determine if we should have the vent removed. We expressed our concerns about initially making the decision to vent her and the decision to remove the vent without seeing her, talking to her, and accessing the demeanor and situation ourselves. I relayed my concerns on how she might be feeling toward us after making the decision. Did she even want to see or talk to us? One of her nurses offered to go to her room and ask if she would like me to call so she could talk to me. Before she got back, the team had decided that because we knew her best, and she had the problems she did, one of us might be able to visit her. They would get whatever permission they needed and contact us when they had it. The decision was made that my youngest brother would go since he was closest in distance. The team expressed their appreciation and the thought we had put into the questions we asked. The team dispersed and I spoke a little longer to the family liason group, the nurse who went to speak with my mother came back and told us she very much wanted to speak with and see us. We ended the call so they could work on the permissions.

With the help from a nurse, I called and talked to mom, I told her they were working on letting us come see her soon. Not long after that, I received a phone call saying it had been cleared with administration. I called my brother and he headed over. I started the 4 hour drive to the hospital. About an hour later, my other brother started his 4 hour drive. We had all decided to go, knowing it may be our last chance to see her.

During my drive, my youngest brother, who was with mom, called to update me. It was then I knew the vent tube would be coming out, she was not going to recover from this. Lung cancer, Keytruda, Myasthenia Gravis would take my mother from us. It hurt. It still hurts. It will hurt for a very long time, I know that.

The three of us spent individual time with her Friday afternoon and evening, she was sleeping most of the time but would also wake, fight the tube, and communicate that she wanted it out. We had a pastor visit and give her the Lutheran Commendation of the Dying, the hospital spiritual staff also visited and prayed with us. At one point, the hospital and spiritual staff made the decision all her children could be with her at the same time. I am so grateful they allowed this.

At 8:34PM, the intubation was removed. She quietly passed less than 10 minutes later. Her children were all there with her, I know she knew this and was happy to have all of us there and it made it easier for her to go.

If you have made it through this, thank you for sticking with it. But this one wasn’t for you, Reader, it was for me. I hope I can begin to “Let Go” now. And maybe this will help someone else going through the same struggle. Listen to your gut, push. Don’t back down until all your questions are answered.