Story The 2nd anniversary of my husband’s death

[BlueWidow]

I had just been getting over a long illness and had only started feeling like I was truly beginning to recover in September of 2012. Right on cue, in October 2012 my husband suddenly started becoming very ill. He couldn't keep food down, he was nauseous and vomiting all the time, he was rapidly losing weight, and he was having severe pain in his back. He spent the next three months going back-and-forth to the doctor at least once a week. The stupid doctor kept giving him one pill after another and trying to treat his symptoms without ever bothering to try to find the cause of the problems. At the end of three months, we had an entire counter full of pills that he was supposed to take. I remember looking at all those pills one day and thinking that there was no way that some of the pills could not be reacting with some of the other pills. This doctor was just throwing every pill at him that she could think of without thinking of how they were going to react with each other.
Then came the horrible week at the end of December when he went to bed and didn't get back up. This was very unlike my husband. He was not the type of person to lie around in bed in the morning. We both liked taking naps, but he would always be up early in the morning.
He was very sick and delirious and I didn't know what to do. I was by myself and I had no one to help me. After a week, I knew if I didn't do something he was going to end up dead. I finally decided to call his adult children even though I didn't really know either one of them. He had a son and a daughter and it was around Christmas time so I knew they were going to be together. I called his daughter and told her that when her brother arrived at her house I wanted them to call me so that I could talk to both of them at the same time. She eventually called back and I told them what was going on and I let them talk to their dad so they could hear how delirious and sick he was.
I had been trying to get my husband to go to the emergency room and he refused to go. I didn't know how to get him to go. At the time, I had run out of my thyroid medicine because my doctor would only let me get a refill if I went into his office in person and I couldn't leave my husband for that long, so I had been going without my thyroid medicine for over a month. Therefore I was not really thinking clearly or functioning very well myself.
This is why I didn't even consider calling an ambulance. However, his daughter told me to tell him that if he didn't agree to voluntarily go to the hospital that I was going to call an ambulance. We lived just five minutes down the street from the hospital and she knew that he wouldn't want to pay a giant ambulance bill when he could just get into a taxi and drive down there for a cheaper price. He agreed to go to the hospital and they eventually checked him in saying there was something wrong with his kidneys. The next morning I found out that if I hadn't gotten him to the hospital when I did, I would've woken up to find him dead the next day because his kidneys were already 2/3 of the way shut down by the time I got him to the hospital. The next step was to find out why were his kidneys shutting down. On Christmas day of 2012, they gave me the answer. His kidneys have been shutting down in a kind of self-defense move because his own white blood cells had been attacking them. The doctors told me his bone marrow was producing way too many white blood cells and he was diagnosed with multiple myeloma, which is cancer of the bone marrow. It causes problems with your blood cells and causes you to have severe back pain. This began a long and horrible road of chemo treatments, bone marrow biopsies, a bone marrow transplant, and him being placed in a nursing home so that he could work to regain his strength before he came home. They didn't want him to fall down and break a bone. I saw him get poked and prodded and stuck and tested, etc.
It was a complete nightmare and I think was hard on both of us. But he was a trooper and he allowed them to do whatever they wanted to do to him. I know he must've been in horrible pain most of the time, but he hardly ever showed it and he refused to take any serious pain medicine. After the bone marrow transplant, which is a very serious procedure, he was back to work in three months! He once told me that if he didn't have his work to go back to he probably would end up dead because that was what made him get up every morning. He knew he had to get up and go to work, and so he did. He did it many times when he should've stayed in bed. One time he had to give a 30 minute speech in front of some clients in a town 2 1/2 hours away.
The problem was that he could barely stand up because he was so sick. The chemo made him sick, the cancer maintenance drugs made him sick, and the bone marrow transplant had pretty much wiped out all of his immune system. Therefore, he caught any illness that was going around and brought it home to me and then I caught it. But even when I was at my sickest, I was at least not dealing with cancer the way he was. Anyway, he was very sick on this day, but he had to give the speech. Anyone else would've just asked someone else to give the speech, but my husband was determined to give it himself. He got a coworker of his who owned a station wagon to pick him up and he lied down in the back of that station wagon for the 2 1/2 hour ride to the place where he was going to give the speech. He then got himself together, went out and gave the speech, and then got back in the back of the station wagon and rode the 2 1/2 hours back home. His coworker said he had never seen anything like it in his life. He said the change in my husband right before he gave the speech going from looking completely sick and near death to looking like he wasn't sick at all while he gave the speech was one of the most incredible transformations he's ever seen in his life. The people he gave the speech to had no clue how sick he was. That was just one of many amazing things I saw my husband do while he was so sick he could barely hold his head up.
I now have a lot of my own health problems and most of the time I'm lucky if I can get out of bed, but there's no way in hell I could go out and do a job in the condition that I'm in. I have no clue how my husband did it. He was just the most amazing person I've ever known in my life. He was intelligent and creative. He had a masters degree in engineering and math. He was a musical prodigy. He could pick up any instrument, even if it was something he never played before in his life, and within an hour he'd be playing it like he'd been playing it his entire life. When I first met him he used to play songs that he made up for me on the piano. I wish now that I would've recorded some of them. He was always making up songs and calling me on the phone and singing them to me. I do have one recording of a song that he sang to me when he rented a karaoke machine for his grandkids while he was watching them one day. My husband was intelligent. He worked for NASA and Honeywell. He read books on quantum physics. He would try to talk to me about things and sometimes he would talk so far over my head that I had no clue what he was talking about, but I always found everything he said fascinating. He would try to talk to me about string theory. He could've been a very wealthy man, but he always seemed to give his talents away for far less money than they were worth. He was the most generous person I've ever known in my life.

 

[SinisterKid]

Sorry, but I think you posted this piece twice.

 

[BlueWidow]

We did his first round of chemo and the bone marrow transplant in 2013. From 2014 to August 2016, he wasn't cancer free, but there was so little cancer in his body that it was undetectable. They told us that the cancer would eventually come back though. By August 2016, he had been having back aches again for about three months. Of course, I didn't know this was going on because he didn't tell me about it. I did, however, notice that he had little lumps on his back. At the time it didn't occur to me that those little lumps were probably tumors. In August 2016 he finally went in for another bone marrow biopsy and I went with him.
The next day the hospital called and said he had to come in immediately. I was in the room when he was talking to the nurse and he was telling her that he had things he needed to get done for his work and he didn't have time to come in that day and he had brought me in the room to try to schedule an appointment for a different day. He had the nurse on the speakerphone and she said, " You have tumors all over your back. You have to come in TODAY". he got very angry at her for saying that where I could hear it. He agreed to go in, but he wouldn't let me go with him. He said he would go in and get his test results and then stop by a worksite that was near the hospital on his way home. I think he was in denial that the cancer had come back. He really didn't want it to come back.
A couple of hours later, he called me and told me they were checking him into the hospital. His cancer was back. His second round of chemo was just as horrible as the first, but the difference was he was no longer on the maintenance drugs. The maintenance drugs had made him exhausted and sick, much more so than the chemo did. Therefore, when he went off of them, he was almost like his old self again before he had cancer. Suddenly his energy came back and he was running circles around me even though he was many years older than me. Once we got into a pattern and we knew which days he was going to be sick from the chemo, he would take the days that he wasn't sick and use them to the fullest extent to do everything that he wanted to get done during those days. His daughter started coming around to help out. By this point, I had been taking care of my husband pretty much alone for nearly 4 years. She came in and made out like she was there to help and she pretended like she cared about me, and I stupidly believed her. I was grateful for the help because I was exhausted from taking care of him by myself for so long. I have difficulty with my energy levels and so forth anyway due to my thyroid problems, so any help that I could get was very welcomed. Of course, had I known what her real plan was, I would've shown her the door and endured whatever I had to to take care of my husband alone.
The second chemo was a big success, but unfortunately, the effects of any particular chemo regime only last for about eight months and then they have to change it because the regime quits working due to the cancer adapting to it. At least this is how it was explained to me. Therefore, after eight months of chemo #2, they changed the regime a bit and this signaled the end. Of course, I didn't know it was the end at the time.
I'm not sure exactly why, I think part of it was my husband's decision and part of it was a decision made by his doctors, but for whatever reason, my husband switched doctors and cancer treatment facilities. The doctors that had previously been working with him to take care of the cancer had all been extremely competent and I had every confidence in them. These new doctors didn't inspire confidence in me at all. Both I and my husband's daughter begged him to go back to his original doctors, but he insisted that these new doctors would be just as competent. He was very wrong.
First of all, the switch took much longer than it should have and, in the meantime, my husband was unable to get his chemo for a period of a month and a half which allowed the cancer to start spreading and my husband developed a plural effusion.
For those of you who don't know, I've included a description of a plural effusion as well as a couple of different treatment options below which I got from webmd.com:

"A pleural effusion is an unusual amount of fluid around the lung.
The pleura is a thin membrane that lines the surface of your lungs and the inside of your chest wall. When you have a pleural effusion, fluid builds up in the space between the layers of your pleura.
Normally, only teaspoons of watery fluid are in the pleural space, which allows your lungs to move smoothly in your chest cavity when you breathe.
A wide range of things can cause a pleural effusion. Some of the more common ones are:

. . . Cancer. Usually lung cancer is the problem, but other cancers that have spread to the lung or pleura can cause it, too.

2 possible treatments:
Pleural drain. If your pleural effusions keep coming back, your doctor may put a long-term catheter through your skin into the pleural space. You can then drain the pleural effusion at home. Your doctor will tell you how and when to do that.
Pleurodesis. Your doctor injects an irritating substance (such as talc or doxycycline) through a chest tube into the pleural space. The substance inflames the pleura and chest wall, which then bind tightly to each other as they heal. Pleurodesis can prevent pleural effusions from coming back in many cases."

The problem is that it makes you feel like you're drowning. My husband would feel this way anytime he tried to lie down and therefore he couldn't sleep. And then lack of sleep was making him sicker than he already was. This then became a vicious circle where he needed to sleep but he couldn't but the lack of sleep was making all his other symptoms and conditions worse.
He was put in the hospital in June 2017, which is when they discovered the plural effusion. He was then put in the hospital again in July 2017. The reason I've included the two treatments that are above is because when my husband was in the hospital, his daughter was in the room while the doctors were discussing how they were going to treat the plural effusion. I had previously looked it up on the Internet and saw that they could possibly install a drain and expect us to drain his plural effusion at home. This was something that I did not feel comfortable doing because I knew it was going to cause some kind of horrible infection and I didn't want to be responsible for it. I had enough stress and enough to deal with without having to worry about learning how to use this drain and so forth. So, when my husband's daughter was in the room and the doctors at the hospital were discussing what they were going to do— in front of her they made out like they were going to do the Pleurodesis. However, once they got my husband back in the operating room, they installed the drain without anyone's knowledge or permission. I went to the hospital because he told me he was going to be wheeled into the ER that morning at 10:30. However, he sat in the prep section of the ER from 10:30 in the morning until 4:30 in the afternoon before he was actually wheeled into the ER. When his daughter and I later asked for an explanation they claimed that they had some important people visiting the hospital and that's why it took so long for him to get wheeled into the ER. Apparently these people were much more important than my husband's surgery or any of their other patients! When he finally did go into the surgery, I wanted to know where he was so I could sit outside the waiting room and be the first person he saw when he was wheeled out. The hospital refused to tell me where he was in the hospital and told me I would have to wait in his room! I sat there waiting for over two hours and eventually a young intern came in and tried to get me to sign some papers.
As I look at these papers, I realized it was papers to accept some supplies and when I asked what the supplies was for the person replied that it was the supplies for the drain. I told them my husband's not getting a drain & the intern said, "Oh yes he is and you have to sign so that we can give you the supplies". I refused to sign the papers and I was livid. I called his daughter and told her what they were doing and she was also livid and she came down and we were both yelling at the doctors because they had lied to us. They had told us they were going to do one procedure when she was in the room and then when she left they took him into the ER and did something completely different, and something that she had told them specifically that she did not want them to do because we did not want to have to deal with the drain. Understand this is a drain that goes directly into a hole inside my husband's body. It's a prime candidate for some horrible infection that would most likely kill him. I did not want any part of that. I'm not a medical professional! That's why we pay doctors and nurses and home health care workers. I don't know about other countries, but I can tell you for a fact that in the United States they are starting to force the families of seriously ill people to do more and more of the work at home. I'm talking about things like tending to a drain or putting in an IV, or drawing blood. Things that a medical professional should be doing, but they're trying to force families who are already dealing with a sick loved one and are probably extremely stressed out, such as I was, to have to do these very difficult medical procedures on their own with no training. Why the hell do we even have doctors and nurses if they're just going to make us do all the stuff ourselves at home?! And then when I tried to talk to a doctor about it no one would talk to me. I spent four days calling and asking for someone to talk to me and absolutely no one called me back. Finally, one day I just called every hour on the hour until somebody called me back. Eventually the doctor called me back and yelled at me for bothering the nursing staff and was very condescending and snotty to me and told me that what they had done was none of my business.
It was my husband and I'm the one who had been taking care of him for the previous four years and I was the one who was going to have to tend to this fucking drain and he tells me it's none of my business! Several years ago they created this thing called Health Insurance Accountability and Portability Act or HIPAA here in the United States. It's supposed to be an act that protects the person's medical information. However, doctors are using it so that they don't have to talk to their patients' families and keep them informed of what's going on with their family members. I had signed papers and so had my husband's daughter stating that we could be told his medical information.
In fact, I had signed papers several times over and so had my husband stating that medical information could be shared with me, but every time I would ask about it they would tell me that I had to sign another paper or they couldn't tell me about it, and then of course that paper wouldn't be available for me to sign or whatever. They always had some excuse why they couldn't tell me what was going on. I'm not saying all doctors do this because I'm sure they don't. All the original cancer doctors that my husband had were phenomenal. They kept me informed of what was going on. In fact, in the early days of his cancer, if I wasn't in the room when the cancer doctor visited, he would either have one of his staff members or he himself would call me on the phone and give me a briefing on everything that he was doing and everything that was going on with my husband. He went out of his way to make sure that I was informed about what was happening.

Sorry, but I think you posted this piece twice.

Thanks for letting me know. I'm a bit of a mess today, as you can see.

 

[SinisterKid]

Very understandable given the circumstances. Its a harrowing story, my heart goes out to you.