Chapter 10 (part 3)

On October 8th we came home after two rounds of chemo and a BMT thinking about how the worst was behind us.  For about a month that seemed to be the case. Her counts were good. A biopsy showed no leukemia. All that was left was to rest and recover and take her life back.  

By November things had started to get complicated. Her bilirubin was going up, which is a sign that her body and in particular her liver was having trouble with her new immune system.  We would go to the outpatient clinic almost every day in November. She had scans and tests to make sure it wasn't something else, but her levels kept creeping up. Her skin and her eyes were slowly turning yellow. On November 29, just a couple days after Thanksgiving they wanted to put her back in the hospital.  As they told us, its just easier to treat her inpatient than outpatient.

Over the course of the next week, she seemed fine. She was a little bummed but she was OK. Her levels were going in the wrong direction though. I started to sleep with the phone on my chest in case the hospital called at night. One morning, the phone rang at 6 AM. It is not usually good to have the phone ring so early. She was in bad shape, something happened overnight and the hospital wanted me to be prepared when I cam in to see her.

It turned out that one of the medications she was on was causing swelling on her brain. She would spend the next few days medically sedated to prevent her from hurting herself. 

It is December 10. Her liver continues to not respond to treatment and now her kidneys are starting to fail. That morning as I arrive at the hospital, the entire team approaches me and I knew I was in trouble. We go down the hallway to talk and they tell me that she isn't going to make it. I won't try to use a word describe what that felt like. I quickly made plans to get the kids up to the hospital to talk to her. I sat there with my children as they told their mother they loved her and she returned the love. Again... I can't explain that feeling. It hurts so much to think about.

I sent the kids home and prepared to stay with her. But, she would not back down. She looked me in the eye as I told her they don't think she will make it. We cried together as I again profusely apologized for failing her. As time passed and the emotion of the moment dulled, she just kept persisting. Hours would pass, she was still there.  Before we knew it, it was morning. As I sit here typing this today, I swear to you, the staff was shocked to find her still alive that next morning. 

She kept getting better. Her kidneys took a turn for the better. The hospital staff thought she was stable enough to get her home for Christmas. So we tried to get her home. I won't post the picture here of the day that we left because she is so sick, but its on Facebook if you want to find it. You can see from the look on my face that I am not thrilled. The truth is that I am terrified. Just a week before they were telling me she would not survive the night and now I was supposed to take her home and care for her, by myself without the facilities of a hospital. They gave us a wheelchair and a list of prescriptions so long they sent me home with a binder. 

We had an OK night at home, and by OK I mean we made it through the first night. The second night, however, did not go very well. Cyndi was not able to go from sitting to standing on her own.  As I tried to move her from sitting to put her in bed she passed out. I felt her body go limp in my arms. I have never been so scared in my life. I called 911. I called her Oncologist. She came to fairly quickly but it was evident that we needed to go back to the hospital. The EMTs picked her up and put her in my van. It would be the last time we would be together in the house that we worked so hard to have. The kids came down to tell her the loved her as I tried to reassure them that everything was OK.

The funny thing about that night is that when we got to the ER, they tried to send us home. We had to beg the hospital to keep her.

But like everything before... she managed to recover. She got a little bit better and a few days later we were once again talking about trying to get her back home.  But fate just was not on our side.

A few days later another crisis would rise. As I slept at home, the hospital called in the middle of the night to tell me they were having trouble keeping her blood pressure up. I called my Mom and asked her to come to the house but I just got up and ran out the door. I arrived to find a team of physicians and nurses in her room trying (again) desperately to save her.  For the third time in a few days I had to discuss how much we were willing to intervene. I was not ready, so I made sure we intervened. This event was the worst yet. She would manage to get better enough to have a few more days with me, and to be able to say "I love you" to our kids one more time, but she just never recovered from this event. Trying to save her took such a toll on her body, she was just unable to heal.

I was sure she was going to get better. The morning she passed, I walked in that hospital ready to here the staff tell me that the worst was behind us, and its clear sailing from now on. But that just was not the case. 

One of the things I have heard a lot of people say over the last few days and weeks is that Cyndi lost her battle with cancer. If you take anything from this last chapter, please take that she did not lose to anything. We lost. We lost her. My kids lost their mother, I lost by best friend, and many of you lost a dear fried. But she did not lose anything. 

I said goodbye to her on the evening of Jan 10. I spent the last few hours with her telling her many of these same stories that I recounted as part of this effort. I hoped it brought her soul a little peace as I hope it brings you a little peace to know how much we loved her. As I promised her on that day, and as I continue to say to her everyday, I will do everything in my power to make sure she has a legacy. I will raise young men that would have made her proud. I will make sure there are a dozen grandbabies and that first girl has (at a minimum) Cyndi for a middle name. I will live a life that will make you proud.

I Love You. I Miss You. 

- Eric

 

Chapter 10 (part 2)

Most of the first week of Cyndi's care at Jewish Hospital passes with her out of it. The only way to deal with her pain is keep her doped up out of her mind. She would later tell me that she was having crazy dreams about fairies and how she did not like the feeling the drugs gave her.

By the first couple days of the second week the chemo had started to do its job. She was slowly coming off of the pain medication and she was slowly coming back to me. It is important to note that during this time the hospital never really told me that she wasn't going to make it. They were supremely confident in her treatment at this stage.

The chemo at this stage was only 4 days long. And by the end of day 4 she was pretty much back to her pre-crisis self, at least mentally. Her body was physically damaged from the crisis and she was starting to feel the effects of chemo, but she was awake and could talk to me.

Chemo begins to really kick-in about two or three days after you finish taking it. I remember thinking, well this isn't so bad, she seems fine. Chemo must be nothing. Oh my young one... You don't know.

By day 6 of her treatment she was chemo sick. She couldn't eat. She felt terrible. She would dry heave constantly throughout the day. Cyndi hated vomit. She could not handle the sight, smell, or thought of it. I was always the one who took care of the puking kids (at least when I was home), but she was trapped in this body that didn't want or couldn't do anything else.

She was sick for about 10-14 days. The hospital kept trying to get her to eat, and she would try but her body just wasn't up for it. So they would try to supplement her diet with Ensure. They would pimp that Ensure so hard, and she hated it. One day the dietician put an Ensure on her tray and Cyndi grabbed that drink and threw it across the room. She looked at me as if to say "I told them, I don't want it!". All I could do was nod my head and laugh... She did tell 'em.

Her hair started to fall out in clumps, one night after I had gone home she asked the nurse to shave her head. I arrived the next morning with a pair of clippers to fix the hack job they did. Losing her hair hurt her. She had such beautiful hair. She was down in the dumps for weeks after losing her hair. The difficulty of all this had set in and to make matters worse the hospital psychologist was trying to cheer her up or manage her mental health. Cyndi hated the sight of that lady and she hated talking to her. I would beg the hospital not to talk to her without talking to me first, so I could prepare her for conversations about diet or mental health, but they didn't listen. Sometimes they got a pissed off patient. Chemo has a way of bringing out a side of you that you would rather not display.

All together including her first hospital, Cyndi was inpatient for 37 days the first time. As we took her home, she still could not walk, she could barely eat, and couldn't take care of herself, but she was home. I remember as we tried to walk into the house she fell going up the stairs. She was still so weak. It was awful, I didn't know what to do. We managed to get her to the couch and there she stayed for two weeks. She couldn't go upstairs to get to bed, she barely had the strength to make it to the bathroom. I slept on the couch next to her for two weeks. But after two weeks our backs were just killing us, so I ran to the furniture store and I bought a cheap mattress and frame and I made her a bed in our living room. She slept there for another two weeks.

We had worked out a system for everything. She could walk with a walker but she could not stand from a sitting position, so we had a routine for getting her up from lying to sitting and sitting to standing. We got pretty good at it over that first month. Like I have said throughout this whole ordeal and our whole 20 years, we can do anything together. We drove 35 miles each way to see her Oncologist every other day. It was a 3 hour trip, unless she needed blood or platelets in which it was a 5 hour trip. I missed a lot of work. I have a subscription to satellite radio and we would listen to 90's grunge on the drive there and home. She would often just sit there quiet, like a warrior getting ready for battle. You should all be so fortunate as to get to spend time with someone so amazing.

It is now August 2021. She has gotten well enough to walk on her own with out a walker, although only for short trips. It took physical therapy to get her there. However, now we were planning the next phase of her care. Her Bone Marrow Transplant (BMT). Cyndi had several matches, so all we really needed to do was to get her back into the hospital for another round of chemo and then the BMT. She checked back in on Sept 7th, the day before my 45th birthday. She would undergo a week of chemo and the BMT by Sept 14th. Her 42nd birthday was Sept 16th.

She would be in the hospital for 32 days this round. The chemo was worse, the after effects were worse. But this time we knew what to expect. We knew to watch her lab values to see when they rebound. We knew what foods she could sort of stomach. We knew what would help her mental health, which by this point was frayed to its end. 

On October 8th, she walked out of the hospital. Walking being different than the last time. She rang the bell signaling the end of chemo. We were so optimistic. We were once again planning for our future. They told us the next 100 days would be rough, and the next year will be challenging, but we all believed she was cured. Her leukemia was gone and her life to begin to resume.

 

Next... Part 3.

Chapter 10: Cancer (part 1)

 

This is probably the most important thing I will ever write. Yet, I struggle with how much to let everyone in. I want the world to know and to understand what she went through and what she endured. But, some of it is just not meant for the world to know. She deserves the dignity that comes with her fight, but cancer does its best to rob you of your dignity.

I will leave out some of the details, but I will tell the story as best I can.

In November of 2020 my wife went to see a doctor. It was an attempt to get a yearly physical, because we were trying to be healthy. She and I had spent the summer tuning up our bodies, and let me tell you we looked good. We were both in as good or better shape than we had been in since kids, that is (at the time) 14 years.

A couple of days later she got a call. A non-descript call from the NP to pack a bag and go to the ER. It sent a shiver down my spine, but we complied. She packed an overnight bag and went to the ER. A couple of hours later she called me. "They think I have cancer". We scheduled a confirmatory biopsy for a few days later, but they think it is CML (Chronic Myelogenous Leukemia).

Those first few days were weird. I was freaked out, and I am sure she was freaked out. She managed to keep her cool though. I never saw her panic or outwardly worry. I remember going for a run and breaking down crying on the run. I went with her for the biopsy and I went with her for that first appointment with an Oncologist. Both seemed like out of body experiences at the time. Like you are watching a movie that you can't turn away from. This kind of thing doesn't happen to us, doesn't happen to me. This happens to other people.

The Oncologist gave us the confirmatory diagnosis but said something that instantly made us (at least me) feel better. "If you have to get cancer, this is the one to get". CML which was once a terminal disease had now become a treatable disease in the last few years. A pill a day, keeps the cancer at bay. We talked with the Oncologist about the treatment plan and starting the medication. I know Cyndi was worried, she had to be, but again... outwardly... to me... to the kids... she maintained this air of fearlessness. 

After a few minor squabbles with the insurance company we got approved for and were sent her medication. It is a drug called Sprycell. It retails for $15,000 a month. I work in pharma. I spent many years working for companies making similar drugs for similar costs. I live in a nice house, I drive nice cars, I have money in the bank. The irony that what has provided me such a comfortable life, is something that could drive us to bankruptcy was not lost on me. We made jokes about moving to Canada.

But right out of the gate the drug worked wonders. Her WBC (white blood cell count) which should normally be around 3 went from 300 (diagnosis) down to 3 in a couple of months. A blood test would no longer be able to identify any illness. She had some minor side effects from the meds, and I know the thought of being stuck on this pill for the rest of her life bothered her, but it seemed like it was going to work.

We went right back to normal life. She taught home school for our kids during our COVID year. She kept being a wife and a mom. We would go every two weeks and get labs, and I would plot out her lab values to track her progress. 

In April 2021 the family went on spring break. I rented an Airbnb in Orlando. I brought my parents with us too. All 8 of us in a house together enjoying the Florida sun and a little time together. She was healthy, and she was cute. 

The picture above is our last picture together healthy. In May, just a few weeks later everything changed.

It was the end of the school year, and you know that by the end of the school year the teachers are just toast, well it seemed to be the same for Cyndi. She was getting tired late in the afternoon. She would need a nap almost everyday. I distinctly remember thinking she was being lazy. A feeling that hurts my soul right now.

We thought it was just a side effect of medication or the CML. I wish so much that I had just taken her to the damned hospital for a check-in with her Oncologist. I would not have been able to stop the cancer, but I certainly could have made what happened next easier for her.

The tiredness just kept getting worse and then she started to get fevers. Low grade fever at night, that would pass in the morning. She would be good all day but by later afternoon, it was like all the wind was just sucked out of her sails. We thought it might be COVID, might be the flu. Its probably just the meds. One of the problems with our current drug marketing is that EVERYTHING is listed as a potential side effect. So much is listed that you can't identify the real problems, the forest for the trees kind of thing. But the fevers kept getting worse. One night I almost called 911, she was so hot I could feel the heat coming off her body in the bed. After that scare, the next morning we called the Oncologist and made an appointment for a biopsy.

It is May 20th, 2021. I took her in that morning for a biopsy. She felt awful. She was scared. At the hospital we convinced the staff to not send her home after the biopsy but to leave her in the Cancer Center so we could keep an eye on her. That night, I ran out to McDonalds to get her some chicken nuggets. The hospital and for that matter every hospital was in COVID protocol, which meant no one can stay the night. So as visiting hours ended, I went home. The next day, I got to the hospital and she was in good spirits. She was in a good mood. But something went haywire that night. Her body seemed to explode with cancer. Over the course of the next couple of days she would seem to get better and then turn around and get really sick. Her legs were swelling, she could no longer stand or get up out of bed. She had a good night one night, stayed up late talking with Ashley. The next night she was in so much pain we to start a continuous morphine pump. In the span of 24 hours everything had turned.

I was really emotional those first few days in the hospital. She appeared to be dying right there. The hospital was not giving me any information, they spent days running tests for her to see if she had Yellow Fever or other nonsense like that. It is the leukemia, we all know it is the leukemia. What are we doing about the damn leukemia? I recall one night where I sat on the floor next to her, sobbing my eyes out crying. She said to me "I needed to get help, that I can't try to do everything on my own". All I could do was say "I'm sorry". As a husband, as a father, as a man, when it comes down to it you only have one job, to protect your family. All you have to do is to protect the people that you love. I could not protect her, I failed her. You will say that I shouldn't feel this way, that its beyond the measure of my control. But what I think people miss is that it doesn't matter. It doesn't matter the circumstance, it doesn't matter why, I still failed her. That will haunt me until I too take my last breath.

By May 25th the hospital had started letting me stay the night. I stayed out of sight, and I did not leave her room after visiting hours were over to avoid any unnecessary attention, something I would get very good at. Around midnight the attending physician called her room and the nurse told me to answer it. The hospital told me, she was beyond the scope of their care. She needed to be moved to a hospital that was specialized in treating her particular condition (they gave up on Yellow Fever as a cause). They asked if I wanted to wait till the morning to move her or if we should move her right now. I said right now. An hour later transport arrived to take her to the Jewish Hospital in Cincinnati. She would spend more than 100 nights at this hospital over the next few months. The thought of that place makes me want to burn it to the ground.

We arrived at Jewish, it was the first time in the last week that someone clearly had a plan to address her illness. Her cancer had progressed rather suddenly, she was having a Blast Crisis. Her body was making white blood cells as fast as it could make them. The cancerous cells were killing her healthy bone marrow. She was swollen, full of fluid. She could no longer mover her arms or legs because of pain. They upped her pain medication and it essentially knocked her out. She would stay unconscious for the next few days as the prepared the treatment plan. She would start chemotherapy on Monday.

Next: Chemo