Greetings blog readers. It’s Nancy with an embarrassingly late update. For the last ten weeks, I’ve had these really great intentions of sitting down and writing an update. You know what they say about intentions, soooo…
First, the first headlines:
Dan is doing really well.
He continues to be on the RVD treatment schedule and is currently starting Round #4. Every Friday he goes in to the U of M Masonic Cancer Center and gets a complete blood workup. Once the results are in and everything looks good, he takes a mega-dose of Dexamethasone (a steroid designed to keep side effects at bay as well as help with inflammation in the body) and then gets a shot of Velcade, which is a chemotherapy injection under the skin. In addition, he takes Revlimid - an oral chemotherapy - for 14 days, then one week off and another 14 day cycle starts again.
After that, he goes back to work, comes home and is usually up most of Friday night, thanks to the steroids.
By the time Saturday rolls around, he’s ravenously hungry - like eating-all-day-long hungry. Sometimes he’s headachy, but it’s more than likely due to lack of sleep.
Sunday arrives and his appetite is back to normal and his sleep is slightly better. It’s a bitch to have fatigue AND insomnia, but like everything else, he takes it in stride. He sleeps when he can, including in the middle of conversations with me. I’ve taken pictures, but I’m pretty sure he’d kill me if I posted them.
He has gained nearly all of his weight back and he looks great. He looks like his old self again, which I happen to be pretty fond of.
Ditzy or Just Dizzy?
He’s had a few scary dizzy spells. The first one happened after the second Velcade injection. We were watching “Once Upon A Time in Hollywood” when all of a sudden he paused the movie and said “I feel weird”. I looked over at him and I could tell he wasn’t joking around. As calmly as I could, I launched into a litany of questions: “Are you lightheaded? Do you feel warm? Is your heart pounding? Do you feel like you’re going to faint? Is it like vertigo?” Every answer was no.
He described it as more like double vision or a kaleidoscope. I felt his head, he felt fine. Not warm, not clammy. I went to get him a glass of water and asked him to close his eyes to see if it helped. By the time I came back with the water, the dizziness had passed. It lasted approximately two minutes. But I could tell he was rattled by it.
I was actually quite calm because I had just been reading about the possible side effects and remembered that it said dizziness and blurred vision was a possibility. We discussed it at the next appointment and they explained that it was normal.
Since then, it’s happened a handful of times. None as intense or as scary as the first time - thankfully.
Baby's Got Back
His spinal cord compression fracture is healing nicely. We have had two visits with the Neurosurgeon which involved new sets of x-rays spaced 6 weeks apart. The most recent appointment was a couple of weeks ago and the news was wonderful!
On February 13, Dan was able to start weaning out of the back brace, which means I can no longer call him Turtle. I might continue just for old times’ sake.
He was advised to wean SLOWLY to give his back and abdominal muscles a chance to strengthen up a bit. We’ve decided that he will begin the weaning process at home before bed. So about an hour or two before bed, he’ll remove the brace and start that way.
He will gradually work up to being completely without the brace. Physical therapy has been ordered to help with strengthening and stretching his back as well.
We’re not sure how long it will take for him to be completely out of the brace, but he’s not going to rush it. The back has been by far the worst part of this experience for him and he wants to do it right.
Vacuuming sucks. So does shoveling. Don't do either.
He was told that there are two things that typically cause a person to re-injure themselves: shoveling and vacuuming. Anything that involves “stationary twisting” is a BIG no-no. Think of when you shovel. You scoop and throw the snow to the side. BAD.
Same thing with vacuuming. The doctor said that he can still vacuum, but instead of twisting from side to side, he would have to vacuum in straight lines and turns.
I really hate vacuuming, so I tried to talk REALLY loud when the doctor was telling him not to do it, but no luck.
He heard her. Shoot.
Ice. Ice. Baby.
I should mention that the VERY FIRST thing he asked the neurosurgeon about his back was….
“So can I start skating again?”
If looks could kill, he would have been on the floor. Seriously, I almost smacked him, but since he’s been wearing this hard turtle shell, if I smack him, I hurt my hand.
Her response was “Sure. Just don’t fall”. He actually responded with “Well, it’s not usually my fault when I fall”.
Oy. Kill me now.
Much to Dan’s disappointment, hockey will have to wait at least another 6 months. I make jokes about it, but it is hard for him to be out of commission during hockey season. He loves being a referee. He loves the game, the kids and his fellow referees. There’s a financial element to it as well, but it’s really his love of the game that makes it hard for him. Thankfully, he understands that he needs to take the time to fully heal and that he can’t do anything to jeopardize that process.
However, he recently received a phone call from one of his hockey people who asked him if he'd be interested in being a goal judge for some upcoming playoff games. Needless to say, he jumped at the chance to be back in an ice cold hockey rink. Go figure. But he loves it. He gets to see his referee friends, earn a little cash, get out of the house and participate in a game that he loves. Win-win.
Thank you next.
So what’s next on the medical front? We’re not sure yet. We’ll be meeting with his hematologist soon to discuss the next steps. It could be more rounds of treatment, it could be a stem cell (bone marrow) transplant -- we just don’t know. But we are prepared for whatever the next chapter is. We will keep you posted on all developments.
In other news…
The holidays were a strange and interesting time. No one expects to end the year with a cancer diagnosis so we weren’t sure what to expect. Would he be feeling good enough to celebrate? Would anyone have a cold and if they did, should we stay home?
Fortunately, Dan was feeling good and we celebrated Christmas as we always do. With family and people who love and support us. The generosity and kindness of my family never ceases to amaze me. More on that later.
Speaking of family….two wonderful blessings during all of the scariness and uncertainty was getting lengthy visits from Dan’s kids Joe and Cori (and Cori’s husband Jake).
No that’s not right. They are Dan’s kids, but they are so much more than “just” Dan’s kids or my “stepchildren”. I don’t like “step”. It reminds me of Demi Moore’s character in St. Elmo’s Fire calling her stepmother her “step monster”.
Let me backtrack a little. Dan and I got married when Joe and Cori were young adults. They were welcoming and kind to me and I think I was the same to them. But it’s hard to blend families…for both the parents and the kids, no matter the age.
I’m only explaining the backstory because it makes the present story so special to me.
When Dan was in the Emergency Room the very first night, he looked at me and said “what do we tell the kids?” Uhhh….I don’t know. What do you want to tell them?
After much discussion, the decision was made to not say anything until we knew more specifics. With both of them being so far away, we figured that they would just worry and feel helpless because they weren’t here.
Dan didn’t know if he would be able to get the words out without crying, so I offered to call them. I knew that I could stay calm and explain the details better when the time came.
Telling the kids was on his mind constantly and I could tell it was worrying him. He had been pretty calm and stoic throughout everything he was hearing about his diagnosis, but the thought of having to tell his children that he had cancer was just too much for him.
The time finally came to call them. On Saturday, November 23 we called Joe, on speakerphone. I was going to talk, and Dan would be sitting there with me. In many ways it was one of the hardest things I’ve ever had to do. I kept thinking about how I would feel if I got a similar phone call about my dad and how utterly freaked out I would be.
Joe was very calm, but I could hear the fear in his voice. I couldn’t look at Dan’s face because he could hear the fear too and it was breaking my heart to see him getting so emotional. I don’t remember how long we talked, but I know that it was hard on everybody. When we hung up, I remember feeling a brief moment of relief that it went as well as it did. That is until I remembered we needed to call Cori next.
Due to the 12-13 hour time difference between Minneapolis and Bali, we couldn’t call her until the following morning.
On Sunday, November 24 we were able to reach her early in the morning Bali-time and it was nearly an exact repeat of the conversation with Joe. She was calm, measured in her responses and positive. But again, we could feel the fear coming through the phone. I felt so bad for her that she was so far away.
Dan was emotionally exhausted after the phone calls, but was glad that they knew what was going on. We promised each other that we wouldn’t keep anything from either of them and it was a relief to have them know what was going on.
Later that day, Joe called Dan and talked about flying out to Minneapolis for a visit. Because everything was so new and still swirling around like a tornado, Dan suggested that they talk about a visit in about a week. That would give us time to get a clearer picture of what the next steps were with his treatment plan.
A few hours later, Dan’s phone dings and it’s a text from Cori. The text was something like this:
“I’m getting on a plane tonight and I’ll be landing in Minneapolis on Tuesday at 4:45pm. I’ll be staying at Cathy and Steve’s (her in-laws) and I’ll have access to a car.”
Wha-what? We just spoke to her a few hours earlier. How in the hell did she find a flight….not A flight…MULTIPLE flights, flying THIRTY ONE hours…..in a matter of a few hours?!?
Damn. Never underestimate the power of a determined woman who wants to see her dad.
A couple days later, Joe booked his trip and was going to stay with us. He couldn’t have been sweeter. We spoke on the phone and texted and he asked me numerous times to put together a list of stuff that we needed done around the house.
Right after all of this, Dan got the flu (see earlier post) and ended up in the hospital. By this time, Cori was in town and so was her husband Jake. It was a HUGE help not only because it was great to see them, but they helped out with various errands including trips to the hospital.
Whoops? There It Is.
So Dan comes home and is talking to Joe one night who tells us that his little boy Willy was diagnosed with Pertussis (Whooping Cough). Correction: he was diagnosed with croup. Uh oh. We were given strict instructions to keep Dan away from anyone who has been sick or anyone who’s been around anyone who’s been sick.
Our hearts sunk, but we called Dan’s oncology team who told us in no uncertain terms that we’d have to postpone the visit. Shit. That was one phone call I did NOT offer to make. I had this image of me being the Evil Stepmonster keeping a son away from his dad. (I have too active of an imagination, I know. But I really did tell Dan that he would have to make the call.)
Of course, Joe was great and totally understood. He rescheduled his trip for after the holidays while Cori was still in town. In fact, she was here for about two months.
I could go on and on about our visits, but let me just say this. It was beautiful. It was wonderful. We laughed, we talked, we cried, we watched the Vikings lose, we looked at pictures, we told stories, we laughed some more…and then some more and then even more.
They made us delicious dinners, shoveled snow, took the dogs to get to their nails cut, gave us some fantastic homemade butter (!) and brought us gifts. Joe assembled a storage unit for the garage, he installed a new kitchen faucet, and he crawled up on the kitchen counters to bring down a bunch of stuff on top of the kitchen cabinets. I even came downstairs one Saturday to see Dan vacuuming and Cori dusting the wood blinds.
But hands down the most important thing of all is that they were here for their dad. And for me. It was the best medicine in the world for Dan. I could tell that he was bursting with happiness and pride for those kids. I was too.
Maybe they are my “step kids”, maybe they’re my “bonus” kids…but most of all, they are my family. And my friends. And I will forever be grateful for the time we spent together. I can’t wait for more chances to make memories.
Serious health issues are never good, obviously. But a new, stronger and more meaningful, genuine relationship is definitely a silver lining. I can’t even express how grateful I am for everything they did and said while they were here…and continue to do. We have a text chain going and whenever my phone dings to tell me there is a new message, I smile.
I miss them all. A lot.
If you read my or Dan's Facebook pages, you know that we said to goodbye to our wonderfully sweet, neurotic, funny and loveable Ziggy. Its never a good time to lose a friend, but in the middle of all of this makes it especially hard. He loved and he was loved. He added joy and laughter to our lives, he was a comfort in times of sadness and loss and he was one amazing creature. The energy in the house is different. He's missed every single day and we will never, ever forget him.
Before I sign off…..I want to say a huge thank you to everyone for their calls, texts, Facebook messages, cards, gifts, etc. I apologize that I’m so slow in responding to everyone, but I’m working on it. Be patient with me and don't take it personally.
Both Dan and I appreciate your prayers, good thoughts, check-ins and positive vibes. I can’t tell you how much it truly means to both of us. This is a frightening journey, but with the love and support of our friends and family, it makes things easier to navigate.