Sooooo…. it looks like December 6th, 2019 was my last chemotherapy treatment.
A lot has happened since I wrote on here last, and I’ve got to say my mind has been speeding a little out of control since I was advised to end chemotherapy early due to some crazy symptoms ramping up (yeah… I’ll get to that). The other day when I was back from the hospital after Amanda gave birth to our twins (I’ll get to that too), I was having a shower. We had been in the hospital for 5 days, and I was really looking forward to shaving and washing off all the baby vomit and urine that I’d been showered in over the previous 5 days. But there was a lot to do, and a lot to figure out… namely my upcoming PET scan (which I got the results of today… and yeah, I’ll get to that too)
So anyway, back to what’s important. I was in the shower and thoughts were racing through my mind. I reached for the shaving cream and started spreading it on my face because I hadn’t shaved for 5 days. As I was doing this, I couldn’t help but notice how smooth my skin was.
I stood there dumbfounded with my jaw on the floor for a few minutes. There was quite a bit of stubble on my face a minute ago… where did it go? The water was beating against my back, and I’m trying to make heads or tails of where the hair on my face went.
I must have shaved less than 5 minutes earlier, and I still have absolutely no recollection of doing it.
Here’s what’s been on my mind.
I have twins boys now and I couldn’t be happier to be a father. This is something Amanda and I have wanted for a very long time. All I can think about is that I want to be at my best for these boys. I want to have the energy to teach them and play with them whenever they want me. I know it’s not a good thought, but I didn’t think that I could be the man that our babies deserve while going through chemotherapy. It’s the happiest time in our lives, but there was an underlying threat that couldn’t be ignored. I had a PET scan on Monday. This was the scan that would determine whether we’ve been in complete remission for over a year, or the scan that tells us that cancer treatment may just be a fact of life, from here on out. The research says that with Brentuximab, the drug I was on, 1 full year of remission drops your chances of relapse dramatically.
I’ve had so many PET scans now, that I’ve genuinely lost count (this will be the 6th, I had to go back through our records to check). But with our babies the stakes seem a lot higher now. The cost of not being around or not being my best self feels so much greater. However, seeing Amanda give birth to our twin boys without an epidural or any pain medications was awe-inspiring. The experience was nothing short of transformative, in so many ways. If she can do that, I can handle whatever is coming my way.
Today, we found out my scan was completely clear. No more cancer, this marks the all-important 1 full year of remission. The end of a battle that’s lasted over 2 years.
I’m not even going to try to explain the emotions brought on by this news. I’m sure you get it. I don’t think that Margret Atwood, Robert Frost, and Kurt Vonnegut all rolled into one would be able to describe the way my loved ones and I are feeling right now. Maybe this picture does it?
Leading up to this scan was no cakewalk. Whoever’s in charge decided to play a really dirty trick by giving the symptoms of effective chemotherapy treatment the same side effects as an active malignant tumor:
- Reduced appetite – Side-effect of chemotherapy. Unexplained weight loss – Symptom of lymphoma… imagine the way our minds were racing while watching weight falling off me AGAIN! I’m down 20 pounds in a month or two without changing my diet or exercise routine. Amanda and I would be holding back tears pretty routinely after I weighed myself in the evening.
- Night Sweats – Side-effect of chemotherapy. Night Sweats – Symptom of Lymphoma. In recent days I’ve woken up soaked. LITERALLY soaked. I mean water and salt stains in a body-shaped oval on our sheets and pillows at 3 am. Every time it’s happened I dry myself off, lay down some towels or a bathrobe, and lie in bed with memories of all the times this has happened before I was diagnosed.
- Tightness in the chest – Side-effect of chemotherapy. Tightness in the chest – side-effect of Lymphoma. This was the symptom that initially lead to my diagnosis in late 2017. Any time I’d take a deep breath past about 70%, it would get a sharp pain and have to exhale or cough it out.
In addition to these side effects, I’ve been experiencing muscle weakness and numbness in my arms and legs. This is a major pain in the ass. My job requires me to do a lot of fine dextrous work with my fingers. Imagine trying to button up someone else’s shirt with one hand tied behind your back and no feeling in your fingers. This is kind of a regular occurrence at work for me. I don’t have much sensation in my legs from my knees down, and the muscles that lift up my feet are very weak. I’m always catching my toes on rugs and stairs and stuff like that. Any hopes of playing basketball or volleyball are out the window until this resolves.
Now, we’re just going to find out what life looks like without cancer treatments. It’s been two years since the “next treatment” has been looming. Time to find out what the “new normal” looks like where we get to subtract chemotherapy and add twin boys!
So it Goes.