How Are You Doing?
As I sit here attempting to write this, I am taken back to memories of writing these posts over the past 17 months. My emotions ranged from scared, sad, hopeful, optimistic, worried, relieved and happy. In the beginning when Dan was first diagnosed with Multiple Myeloma, he was ADAMANT that he didn’t want a Caring Bridge page because he thought they were “depressing”. Insert eye roll here.
When I told my sister Patty about Dan’s feelings, she suggested a blog - one that was used to communicate health updates about Dan with our friends and family. But someplace also to celebrate successes, tell funny stories, and let people into our lives in a very public way.
Dan never regretted it. He enjoyed being able to communicate on a larger scale and not having to worry about responding to calls or texts if he didn’t feel up to it. But most of all, he was uplifted and heartened by the outpouring of love and support.
He would constantly say to me, “I can’t believe this. Can you believe that I heard from [ _______ ]?” insert the name of former teachers, old classmates, former co-workers, friends that had lost touch, extended family, clients and fellow referees.
I’ve said many times that when Dan was first diagnosed, I could literally feel the love and support surrounding us. That support sustained me when I was sitting in the waiting room of a hospital, when I was waiting for test results, when he was so desperately sick after the Stem Cell Transplant and even when I was just scared and alone in the middle of the night.
I can’t say thank you enough right now. In fact, I can’t say much of anything too emotional right now. I’m gutted. We all are. Everything I see, touch, hear and smell reminds me of my sweet Dan. I will write more on that at another time.
After the outpouring of emotion over the past few days; Joe, Cori and I have decided to keep this blog active. My sister Patty has graciously and generously agreed to continue to be our editor, manager, layout design artist and IT expert – of which we are all so grateful.
Perhaps the blog will be a way for us to deal with our grief and loss? Maybe it will be a place to work out our emotions? Maybe a place to share personal stories about Dan? It’s hard to say what it will morph into. But as people who knew and loved Dan, we’d like to welcome you along with us.
What Actually Happened.
There has been some confusion on what happened. First and foremost, Dan did NOT die from Multiple Myeloma; he died of complications from COVID-19. In January, Dan had his third bone marrow biopsy, a full body PET scan and extensive blood work. He was told he was in a “deep remission” after a successful bone marrow transplant.
In March he was supposed to have another series of post-transplant tests which would have been his final appointments until the one year anniversary of his transplant.
Because it takes a full year for a transplant patient to regain their immune system, Dan had lowered levels of white blood cells and platelets. This was normal at that point in his overall transplant recovery. In addition, the daily maintenance dose of Revlimid affected his overall blood numbers, but again, that was normal and was being monitored.
His compromised immune system is why COVID took its vicious hold on him. As I explained in my last blog post, both our COVID symptoms started very mild. Mine were actually slightly more pronounced than his at first.
By the time this past weekend came around, he was getting progressively worse. But he still wasn’t having any of the emergency symptoms (trouble breathing, low oxygen, chest pain) at that time.
Once he passed out, it was obvious something not good was going on. He went to the University of Minnesota hospital and had an EKG, which was normal. They then scheduled an echocardiogram for last Tuesday along with some of the usual bloodwork he routinely done.
On Tuesday, his lab appointment was first and they noticed his blood pressure was low and his oxygen levels were lower than normal. They put him on supplemental oxygen for a while and then sent him on to his echocardiogram appointment.
You know the rest…he was admitted to “keep an eye on him”. He stayed overnight Tuesday and Wednesday night while they monitored him. Then Thursday morning I got a call that he had a stroke and a procedure to remove the blood clot. All of this is detailed in this blog post.
By Saturday afternoon around 4:00 PM, things were changing constantly. His liver numbers were still high, but had come down and was stabilized. But his kidney numbers went from completely normal Friday to “very high” on Saturday afternoon.
The white blood count and platelets numbers were now “abnormally low”. Even though they were low to begin with, they were dropping and so he was given replacement plasma and platelets. He was starting to develop fevers. His heart looked better than the day before – more stable. His blood pressure was still a low but doing well enough that he didn't need medication to keep his blood pressure up on Friday or Saturday.
The doctor at the ICU described what was happening as “whack-a-mole”- one issue pops up, it stabilizes and then another issue pops up. She said he was stable, but “pretty sick” and all they could do was watch, wait, and treat what every happened next.
She explained that part of the insidiousness of COVID is that some people are prone to bleeding and others are prone to blood clots. Dan was having both. A blood clot caused the stroke, but some minor bleeding in the brain was being seen.
On Saturday he was semi-awake and very sleepy. He was still on the ventilator since the blood clot procedure on Thursday, but I was told he was only mildly sedated. He would periodically open his eyes on his own and would do the same when they would say his name loudly or when they would come in to suction the ventilator.
He was getting neuro checks every hour where they would ask him to give a thumbs up or wiggle his toes. But he was not following those commands.
She also explained that with the kidney issues, they would expect him to be very sleepy. At this point, it was serious, but it still felt like there was hope. I was told that people can definitely recover with this level of illness and while they couldn’t give any guarantees, they were hopeful too.
The final turn came via a phone call to the house at midnight on Saturday. His nurse explained that he was not doing well and they were going to put him in the “proning” position.
You’ve probably heard about this, but it’s where they turn the intubated patient on their stomach because it allows them to get more lung expansion and hopefully have better oxygen flow. They also explained that his breathing was being done exclusively by the ventilator. They said they had no other information but would call me if things took a turn for the worse.
At about 3:00 AM, I was told to come to the hospital. I was confused because I was not able to visit him and had not spoken to him since Wednesday night. I called Donna and as usual, my guardian angel-soul sister-superhero came right over and drove me to the hospital.
Donna had to remain in the Main floor lobby and I was taken up to the Neurology ICU. As I walked through the double doors, I saw a room to my left where the curtains were partially pulled. I could still see in the room and I saw a foot - Dan’s foot. It’s funny how you can just see your spouse’s foot and you know it’s them. For some reason, it comforted me. I attempted to look in the room and it was just a whirlwind of people and machines. There were four people in the room, looking after him. All I could think about was that he would be embarrassed by all of the attention.
The Neurology attending physician brought me into this sweltering hot, little room to explain the situation. Everything was snowballing…multi organ failure, elevated liver numbers again, tachycardia (fast heartbeat in the 140s), septic shock, low blood pressure that wasn’t improving with medication, zero urine output even though he was producing completely normal urine levels the day before and now it was absolutely nothing by Saturday night. I said, “Just tell me the bottom line”. They said he had a 50-50 chance of surviving the night and if he does survive, he will definitely need dialysis.
As I heard that all I could think was...“I don’t care. He can get dialysis. I’ll give him a kidney." LOTS of people would give him a kidney. My cousin’s husband Neal offered bone marrow when Dan was first diagnosed. So did Pat Byrne, Dan’s best friend. We’ll find a kidney or two if he needs them. I asked her to be completely straight with me “is there any way he can survive this?”
She said, “Yes. Things don’t look good now and I obviously can’t make any guarantees. But yes, people can survive. However, I recommend that you pray”.
I asked if I could see him. I was off quarantine from my COVID diagnosis, but I haven’t been vaccinated. She said she would ask the Charge Nurse. Yeah, I’d like to see you try to stop me from seeing him. Thankfully, I was told that I could go in but I had to be fully suited up, which meant two masks, two pair of gloves, full PPE gown and face shield.
Once I fully suited up, I started to open the door and was told “You can’t touch him. In fact, you can’t touch anything." I could feel my heart shattering in a million pieces.
How am I not supposed to touch my own husband? He’s alone and while he’s maybe not conscious, he needs to know that I’m here. Then I remembered that for some unknown reason, before I left the house, I went back into the bedroom to spray myself with the perfume I wore at our wedding. Maybe through everything, he will be able to smell that I’m there?
Once in his ICU room, I walked over to the side of the bed where his face was turned and I was relieved to see that to some degree, he just looked like he was sleeping on his side. Obviously, he was on the ventilator, but he looked like my sweet Dan. His coloring was good, his face was peaceful and it was him.
Because of the noise of the ventilators, I was told that I would need to speak loudly to him. I got as close to his face as I possibly could without touching him and I told him to fight. I told him that he couldn’t leave me. That I needed him. That Joe and Cori needed him. I told him that no matter what condition he comes home in, we’ll get through it. We’ll get through ANYTHING. I told him how much he was loved. I told him a lot of other things too, but they are just for our ears only.
His back was exposed and it took every ounce of willpower not to rub his back like I did when he was so sick from chemotherapy.
The doctors and nurses were in the room the whole time. It’s hard to have such a raw, excruciating moment that should be private while four other people are right there. But you do what you have to do in the moment, especially in the time of COVID.
I left the room and waited for a chaplain that never came. I was told I couldn’t go back in his room again, so I went home to update Joe and Cori. The entire ride home, I kept thinking that I should have touched his back. But I still believed that I would get that chance again because I needed to believe that he would pull through this.
Later when I relayed this story to Patty, she said something that took the “I should have” out of my head. She said, “Nancy, he knew you were there. If you’d touched his back it would have been through two sets of gloves and would have felt like all the other gloved hands in the room. He knew you were there.”
As soon as I got home, I sent Joe and Cori a message, not knowing if they were awake or not. Joe is in England; Cori is in Bali. I immediately got a response saying they were both awake.
The second that text came, the house phone rang. It was the hospital. With shaking hands and a pounding heart, I answered the phone - hoping that it was the miracle I had been praying for.
It wasn’t. “I’m so sorry to tell you Dan didn’t make it. He passed away ten minutes after you left.” I don’t remember much of the rest of the conversation other than I know I asked if it was peaceful and whether he was in pain or discomfort. She said that it was very peaceful. I take a lot of comfort in that.
In the end, at 5:27 AM on Sunday, February 28, his heart simply stopped. His big, beautiful, generous, loving, romantic, emotional heart gave out. My God…how is this possible? How did this happen? WHY did this happen?
I told Dan once that I believed he was my reward for a life well lived. Maybe I didn’t live as well as I thought? In reality, I’ll never know the reason why. I just know that I’m angry. And scared. And sad. And devastated. We all are.
We will all try to heal and find peace somehow. We’ll do it together. I hope that Dan will help us with that. I hope he’ll stay by my side to guide and comfort me as I try to navigate the weeks and months ahead.
The outpouring of love, prayers and support have enveloped us in love and we are all so grateful.
A Memorial Plan In The Future.
Many of you have asked about a memorial service. Obviously because of COVID, there will be no service until things are safer for everyone. I’m thinking of early to mid-summer when it’s safer to gather. But that’s not set in stone yet. As plans are finalized, information will be shared on this blog as well as social media.
I’ve had a number of people ask for my contact information. If you want it, please let me know either in the comment section here on this blog post or via Facebook.
Stay Safe. Please.
Finally, while there is very good news about COVID vaccines right now, we are NOT back to normal. Please stay home if you can. Please wear your mask in public if you must go out and wear it correctly. Please wash your hands. This is not the time to let your guard down, even if you’re vaccinated.
I don’t want anyone to go through what we have gone through. My literal worst fear was that Dan would catch COVID and die alone on his stomach on a ventilator. My greatest fear came true and it’s an utter nightmare from which there is NO relief.
Yes, Dan had a pre-existing condition. But asthma, diabetes, high blood pressure, being overweight, pregnancy, smoking, Down Syndrome and COPD are all considered COVID pre-existing conditions too.
Please be safe. Help keep others safe. No one should die like this.