This is a post I never wanted nor thought I'd be writing.
Because my sister Patty tells me that I “bury the lede”, here it is…
On Friday, November 22, Dan was officially diagnosed with Multiple Myeloma (MM). Multiple Myeloma is a fairly rare form of blood cancer. The cancer is in the plasma cells that as it grows, it crowds out the healthy cells in the bone marrow. This causes bone pain and a weakened structure within the bones themselves.
I say “officially” diagnosed because we had been given a working diagnosis of MM about a week and a half earlier.
It felt like I was shot in back
The road to this diagnosis started back in June. As most everyone who would be reading this knows, Dan has been a hockey referee for twenty years. During a game early this summer, he got knocked over and had some back pain. As usual, the pain went away fairly quickly. But by mid-Summer he was having back pain again. The pain was concentrated more in the rib cage area – close to where he hurt his back earlier.
He did the usual: ice, heat, rest, Advil, etc. and while the pain would fade, it never really went away. Over time, it got worse and he went to our family doctor clinic. He was diagnosed with an Intercostal Muscle Strain (IMS). That seemed to make sense at the time. He was having a hard time taking a deep breath, the pain was focused mainly in the rib cage and the pain he described sounded like someone who had an IMS.
He was offered muscle relaxants but didn’t take them because he’s not a fan of medication if he doesn’t need it. (He would get over that pretty quickly as time went on).
He would have good days and bad days pain-wise. He kept refereeing hockey, going to work, he officiated two weddings (betcha didn’t know what a Renaissance guy he is!) and was going about his normal life. The hardest part for him was not being able to sleep. He couldn’t get comfortable in any position, so many nights he would end up in the guest bedroom or on main floor couches. He wasn’t eating a lot either. He said it was because of the pain.
Finally one Sunday in September, I made him go to TRIA Urgent Care in Maple Grove. They took X-rays, saw nothing, agreed with the IMS diagnosis, and sent him home with instructions to start physical therapy if it wasn’t better in two weeks.
He started having some relief from the pain. It wasn’t completely gone, but it wasn’t as severe. Until one day he bent over to pick up Chloe and felt a pain that he described as a “gunshot to the back”. Despite that pretty graphic description of the pain, he thought maybe he had just bent funny and re-injured whatever progress he was making.
So he started PT….he did it faithfully multiple times a day as instructed. He stopped refereeing because he just couldn’t do it. He started to lose weight – a lot of weight - 25 pounds. He said it was because the pain was ruining his appetite.
Finally, in early November, it was apparent that he wasn’t getting better. The pain was constant, he couldn’t sleep, he couldn’t eat and nothing was helping. I insisted that he go back to our regular doctor at Fairview Uptown Clinic. By the way, her name is Dr. Pamela Noll and she’s fantastic.
On Friday, November 8, he went in. She did x-rays and saw what she thought was “a gas cloud” and possible constipation. If you don’t think that my first thought was “ALL of this because he has to take a shit or fart??”, then you don’t know me very well.
She ordered a CT scan for the next day and sent him home with some Tramadol (didn’t help) and some Mira-lax.
Shit gets real, real quick
On Saturday, he went to the U of MN for the CT scan and went home. That night, I had a get together with some girlfriends and I spent the night at Donna’s house. The next morning, we went to brunch with my dear, wonderful friend Jim Danielson.
As we were finishing breakfast and getting the check, I checked my phone. There was a text from Dan that said “You need to call me back. It’s important.” I went outside where Dan told me in an eerily calm voice, “Dr. Noll called. There’s a mass on my kidney and they think its spread. I have to go to the U of M Emergency Room right now”. I told him I’d meet him there.
I don’t remember walking back to the table and I think I just blurted out “Dan has cancer and they think its spread”. I just remember shaking and shaking…..inside and out. I felt like I couldn’t breathe and felt that if I stood up, I would faint. So I sat there trying to breathe and trying to stop shaking. (I’m actually shaking as I’m writing this.)
Donna offered to drive me to the hospital and I don’t remember getting in her car, but I remember the car ride over. I was telling her what a horrible wife I am. All of the things I’ve done wrong or pissy things I’ve said. She told me to shut up. In a nice way. But I couldn’t stop thinking that I wasn’t attentive enough to how he was feeling, that I was annoyed that he wasn’t refereeing or helping more around the house. And how I was a total bitch for thinking those things.
We got to the hospital and he was just getting vitals checked by a nurse. Once he was in his own exam room, they let us go in. I was still shaking and panting like a puppy and he was as cool as a cucumber. Over the next few hours, he was getting blood draws, visits from neurologists who were testing his legs and feet for strength, movement, etc. Dan was feeling quite proud when the young neurologist who was twisting and pushing and pressing on his legs said “Wow, you’re strong”.
Eventually the ER doctor came in and said that there was some lab numbers that were concerning and based on the CT they thought it might be early kidney cancer because there was a 2 cm spot on one of his kidneys. He described that as “small to medium” sized. I focused on the word “EARLY”. The Dr. also talked about his calcium and albumin numbers being off - same with his hemoglobin which was “a little low”.
Eventually they decided that he would get fitted for a custom back brace to keep the spine stable and that he needed to have two MRIs. One of his back and one of the abdomen. Up until that point, they were planning on sending him home with instructions to come back for further tests. They did the first MRI of the spine and it showed “crushed” vertebrae. It was described as three pillars, standing one in the front of the others. When bent over, the weight of the back two pillars crush the first one. So officially, it’s a spine fracture that caused spinal cord compression.
If not treated, the compression can cause legs and feet weakness, numbness and tingling, bladder and bowel incontinence and worst of all, paralysis.
Because of the additional tests needed, the spine fractures, the lab numbers as well as some lesions on the rib cage and pelvic bone, they decided to admit him that night.
Sometimes you have to call in sick, okay?
More than anything, he was upset about having to stay in the hospital. His first thought was “I’ll have to miss work”. He’s weird like that. He loves his job and he really hates to miss time there. I reassured him that it would be OK. We had a conversation about what to we tell people. We didn’t know exactly what all of the issues were, so why worry people prematurely with the “c-word”?
At that point, we decided to just talk about the back. Nothing about cancer. Obviously, Donna and Jim knew because they were there when I got the call. But we decided to say nothing until we knew more. Our heads were spinning trying to comprehend everything that was being thrown at us. We just couldn’t deal with questions and fears of family and friends at this point. It was hard enough for us to think straight.
Speaking of thinking straight…at the hospital Dan finally got some relief for his back pain. It came in the form of an IV drip of Dilaudid. The doctor said that Dan was “narcotic naïve”, which we weren’t sure if it was an insult or not. However, in less than 5 minutes, he was pain-free for the first time in months.
Unfortunately, I have no good “Dan’s high on painkillers” stories. He was his usual Zen self - just going with the flow, being grateful for pain relief, for the wonderful nurses and doctors who were assigned to him and, of course, he was worried about me. I was calm on the outside but panicked on the inside. I’ve never felt fear like that in my life and yet, HE made me feel calmer. Now you know why I worry that I’m an asshole of a wife?
In the meantime, Donna and Jim worked out a plan to get Dan’s car out of parking at the hospital and they came BACK to the hospital to make the switch. I cannot even imagine what I would have done (and continue to do) without those two in my life. Seriously. There haven’t been words invented that describe my gratitude and love for those two. It makes me cry whenever I think about it.
When in doubt, clean the house
I went home to the loneliest house in the world that night with two neurotic dogs wondering where there Daddy was. Being my mother’s daughter, I got up and started cleaning my house. At midnight, I’m doing dishes and laundry when I realize that we have no hot water. What? We just had a new water heater installed less than one month earlier. Hmmmm…
So I tried to go to sleep that night, but couldn’t - too many thoughts racing around my mind. I was feeling guilty for leaving Dan there, but yet grateful that he was where he could sleep, get some pain relief and be taken care of.
Angels on earth
I need to say that the people at the U of MN Hospital have been nothing but wonderful. I truly believe that nurses are angels on earth. Not only do they take care of your medical needs, but they bring comfort, they make you laugh, they tolerate a million questions and in some cases, they do and say exactly what you need in the moment.
Here’s an example. Because Dan had been in the ER from noon to about 11 PM, he went through at least one shift change of nurses. His first one was hilarious. She had the most Southern accent I have ever heard and the sassiest personality. Dan had to go to the bathroom, but they didn’t want him to get up, so he had to use those of “pee jugs”. That’s what we call them at least. I stood up when she grabbed one (pee jug that is) and I said, “I can do it”. Her response… “well, I hope so. You have more experience in that area of his than I do.” Some people may not want to laugh at times like this, but Dan and I need to. It was perfect.
Later, they came in Dan’s exam area to take him to another test. When they wheeled his gurney out, I was sitting there alone on a hard chair just looking at the ground. Another nurse was doing something on the computer next to where his gurney was. I must have looked sad because she said “would you like a hug?” Anyone who knows me well knows I AM a hugger…but when I’m crying, it freaks me out because it makes me want to cry harder.
But I said yes and when that nurse hugged me, I sobbed like a baby. She literally rocked me for 5 minutes with me bawling the entire time. I’ve already forgotten her name, but I will never forget that moment of pure humanity. It chokes me up whenever I think about it.
Presents on the kitchen floor
Fast forward a couple of days and Dan finally gets to come home on Tuesday evening November 12. Before he left the hospital, we had a conversation with an oncologist. That’s when we learned that the working diagnosis of Multiple Myeloma. The spine fracture, the lab tests all leaned heavily toward MM. The diagnosis has to be confirmed by a bone marrow biopsy. Gulp. We’ve heard the horror stories, but in typical Dan fashion, he takes it in stride. I make him swear that he’s not trying to protect me. He swears he’s not.
The good news is the thing on the kidney is most likely a cyst or an iron deposit. No blockages, no abnormal shape or size of the kidney and no immediate surgical intervention needed for the spine.
Before leaving the hospital, he is fitted for his custom clamshell back brace, which he needs to wear all of the time except when he’s sleeping. He starts taking Dexamethasone (a powerful steroid given for many reasons including inflammation, but also one of the first lines of defense in MM) and he begins the first of ten (10) radiation treatments to the spine/ribs.
Dan’s homecoming that night was wonderful. I’ve never been so happy to see anyone in my life. The dogs felt the same way. In fact, Ziggy was so happy that he took a crap on the kitchen floor. WELCOME HOME DAN!
Dan being Dan, he went to work the very next morning wearing his lovely back brace that is now referred to as the “turtle on the half shell”. I kept envisioning him flat on his back flailing his arms and legs in the air. However, he adjusted pretty quickly and easily. I swear, this man never complains.
Who wants to see the Ref's butt?
The following Tuesday, November 19 the bone marrow biopsy was scheduled for that morning. Dan decided he was going to work afterwards, but I put my foot down on that one. He was told that the biopsy would take about 10 minutes and that he would be awake, but could have intravenous sedatives or not. He chose not to. They did give him a low dose of Ativan to take 30 minutes before the procedure.
We met with the physician’s assistant who would be doing the biopsy. She went through the usual litany of questions as well as an explanation of the procedure. She asked if Dan would be willing to donate an extra vial of bone marrow for research. Without hesitation, he said yes. That turned into a discussion of how many people say yes to that question (about 80%, in case you’re wondering) and why people say no (they’re terrified of the procedure and want it over as possible). Those poor medical professionals have to put up with me asking a multitude of questions. I ask Dan if it bugs him and he says no. Whew. I feel better when I have more information, even about the “minor” things.
I ask the PA where I should sit during the biopsy and she tells me to sit next to him on the gurney. They have him unzip and drop his pants about an inch above his butt crack. But right before that, she asks if it’s OK if someone comes in to observe. He shrugs and says “sure”. The youngest, blondest, cutest thing in the world comes in and I’m thinking to myself…”Poor Dan. He’s lying on his stomach, his ass crack hanging out and there are 4 women crowded around him.” Of course, being me, I said that out loud. We both needed to laugh at times like this.
Dan will eventually be posting his own thoughts and recollections, I’m sure, but I have to tell you….he was a rock star. The entire thing took about 5 minutes, not including the 30 minutes he had to lay on his back afterwards. At one point, he rolled his eyes like he was irritated. I knew that meant it hurt because he’s an eye-roller when he’s irritated or angry. He got a little sweaty and then he was fine. The rest of the time he said “It just feels like she’s leaning on me”. Trust me. She was. I love me some gory medical stuff, so I was trying to be supportive and comforting, but at the same time I’m trying to gawk at what she was doing.
Watching the nurse and the PA work was fascinating. They were completely choreographed and clearly knew what they were doing. I couldn’t believe how fast it went. The whole time the PA is conducting the biopsy, she’s explanation to the Cute Blond Observer what she’s doing. I was awe-struck.
While Dan laid on his back to make sure the incision wasn’t bleeding, we chatted with the nurse who was cleaning up and labeling the specimens. She generously showed them to me, because of course, I had questions. We ended up talking about DNA tests, ancestry, adoption….I have no idea how that happened, but again, it was another example of a person who helped to make a potentially scary situation more human.
Later that day, I asked Dan how he felt, and his actual quote was “I feel fine. When I bump it, it just feels like I got hit in the ass with a puck.” See what I mean? Go with the flow.
All the world's a stage, but we're not on it.
That Friday, November 22 we got the official diagnosis and the treatment plan. Before anyone asks, NO THEY DID NOT TALK ABOUT “STAGES” OR “PROGNOSIS”. Sorry for yelling, but not all doctors speak in those terms because “stages” are not always indicative of specifics or outcomes.
I’m sure everyone does not feel the way I do, but I hate questions like that. He has cancer. It’s serious. It can be fatal. It can be treated. We are treating it and we feel encouraged and optimistic by what his team is telling us. We are choosing to live in the positive because we have been given no reason NOT to. Now that I got that out...
The Man and the Plan
Here’s the plan. He is currently getting a 3-tiered treatment plan. It’s called RVD.
- Revlimid (an oral chemo pill taken for 14 days on, 7 days off).
- Valcade is a chemo shot given under the skin. He will get that every week.
- Dexamethasone (or Decadron) is the steroid I mentioned earlier. He will take 10 of those on the day he gets the Valcade shot.
Side effects vary from fatigue, nausea/vomiting, rashes, neuropathy, compromised immune system, low hemoglobin, etc. The doctor said that most people have issues with the Dexamethasone more than the chemotherapy.
Right now, it appears as though he will have 6 rounds of the RVD treatment with each round consisting of a three-week time period. So, we’re talking about a few months.
On Wednesday, November 27 (the day before Thanksgiving) he had his first installment of RVD. Thankfully there were no side effects except some pain in the arm where they gave him the shot. That happened a few days after he received it. All very normal.
You know what they say about plans?
We had a bit of a setback about a week ago. On the Saturday of Thanksgiving weekend, Dan started to have a dry cough and a little bit of a runny nose. No fever, no other symptoms. Initially he thought that he was coughing because of the back brace. Since the pain started, he’s had a harder time taking real deep breaths and then the back brace is pretty constricting. By Sunday, it felt more like a cold.
Early Monday morning, Dan called the 24 hour nurse line to see if he could take cough syrup. After talking to him for a while, they told him to go in to the emergency room. With a compromised immune system, they don’t want to take any chances with any kind of infection.
So at 5 AM, we’re back where it all started – the University of Minnesota Hospital. After chest X-rays, a chest CT scan, a flu swab and a ton of blood cultures, they diagnose him with Influenza A and possible bacterial pneumonia. Guess who got admitted again? Guess who was upset about missing work again? After a bit of a pep talk, he realizes that he’s in the exact place he needs to be.
They start him on IV fluids, antibiotics and Tamiflu. He had a rough night in the hospital. The first real rough night since this started. He was having fever spikes on and off all night, sweating, chills, etc. It was clear that we got to the hospital at the right time before all of the flu symptoms hit. They kept him two nights while he recovered. In the end, he did not have bacterial pneumonia, but to be safe, they have him on antibiotics for a while longer.
Back on track
He’s home now, back at work and feeling a million times better. He rarely has any of the original back pain and only has some muscle soreness when he sits too long. For pain, he only takes an occasionally Tylenol. He’s sleeping better and is slowly putting on weight.
Wow. This has been a long post. I promise all future ones won’t be this long, but thank you for reading. As I mentioned earlier, Dan will be posting periodically as well, but I just want to make a request or two.
- Please don’t avoid us. Cancer is not contagious. We know that people don’t know what to say or do, but sometimes just a text or a Facebook message saying hi makes all of the difference in the world.
- It’s a scary time on many levels. We’re figuring things out as we go and we need our friends and family. We don’t want to talk about cancer 24/7, but we can’t ignore it either. It’s there with us every minute of every day, but we are still Dan and Nancy. The same people you know and hopefully love.
- This is hard for him. He is a very healthy man who got cancer. It’s a shock to the system. From being the guy who helps everyone to being the guy who needs some help. Dan said to me right after this started “I just want to be Dan. I don’t want to be “Cancer Dan”. Please help him to not feel like that’s all he is.
We're still laughing, loving, planning and just being us.
Sure, some things are different now.
But we're still us.
We humbly ask for your prayers if you’re the praying type, your healing thoughts, your positive juju, your good vibes and your love and support.