Today Should Have Been My Dad’s Last Chemo Day

If you’ve been following my dad’s mantle cell lymphoma (MCL) saga on my Facebook account, or even if you haven’t, I thought it would be a good idea to toss all of the information in one place that won’t get lost in a sea of memes and quiz results.

My dad did not have chemotherapy today. It was supposed to be his sixth and final round of chemo for this mantle cell lymphoma relapse. It seemed to have been going so well. Despite the scary E. coli infection he’d had in October, the CAT scan they gave him at that time had shown that his lymph nodes were shrinking. The cancer was responding well to the Rituxan/bendamustine treatment.

Heartbreak last month when I found out my dad had gone to emergent care for neck pain the night before I went for my lower abdominal pain. He’d seen his oncologist the previous Thursday. By Sunday night, his neck was hurting bad enough to warrant the ER trip. He had chemo that Tuesday, at which time his oncologist looked at the swelling of his neck and said, “Well, that was unexpected.”

The oncologist sent him to have the mass biopsied. The ENT thought it was silly to do a biopsy. “If it looks like a duck and quacks like a duck, it’s a duck.” He’d been the one to diagnose my dad with MCL the first time around. And the second. He knew what he was looking at. And he didn’t want to slice my dad’s neck open unnecessarily, so he performed a needle biopsy instead. That identified the cancer as non-Hodgkin lymphoma, but it didn’t type it specifically as mantle cell. Unfortunately, the oncologist needed that confirmation, so an open node biopsy was scheduled, and my dad had his neck sliced open last week.

Yep. The mass on his neck is mantle cell lymphoma. The results came in yesterday. It’s now the pleomorphic/blastoid variant of MCL, which is a rare form of this already rare form of cancer. Which means that the cancer has become resistant to the treatment he was getting. So they cancelled it because it wasn’t working anymore. And, let’s face it, chemo is just too ridiculously expensive to have done it anyways just to see if it would help.

My mom got bored last night and logged into their health insurance portal to tot up all of my dad’s medical expenses since last June. Every month of treatment, there were the same two charges: $25,086 and $12,160. Since the Rituxan clocked in at about $11,000 a pop the first time around, I can assume that the larger amount represents the bendamustine and the [relatively] smaller amount is the Rituxan. Those are the amounts the insurance company was billed. I felt I had to snap a picture of the paper she had written everything on:

In case you’re having trouble reading that, my dad has racked up $247,549.76 in medical costs in six months, as they were billed to the insurance company. The negotiated rates the insurance company had secured with the various health care providers came “only” to $104,772.54 – less than half the original amount. My parents have paid “only” $1,115 in co-pays for all of this, which is roughly 1% of the amount the insurance company paid out. Definitely better than it could have been, but they’ve been on a fixed income since MCL forced my dad to retire two years ago. And though they grumble about Obamacare from time to time, I am so incredibly grateful that he can’t get kicked off his insurance policy because it costs so much to keep him alive. I’m grateful that he doesn’t have an annual maximum he might have exceeded in a single month, or a lifetime maximum he surely would have reached by now. He deserves to be taken care of in his sickness so he can be restored to health. After all, he worked for over 30 years at the same company, which I strongly believe is at least partially (if not completely) responsible for his cancer in the first place. His retirement package guaranteed he could keep his existing insurance coverage, but nothing is for certain in this life.

So what’s next in his cancer treatment?

Weekly injections of Velcade (bortezomib). He starts this new treatment on Friday. His oncologist must have been burning the midnight oil last night in his research to determine where to go from here.

We’re hopeful that this Velcade will do the trick. My dad doesn’t do anything by the book, it seems, so this could be just what he needs to kick this – hopefully not just for now, but for good. We hope.

Your continued thoughts and prayers are appreciated.

Christina Gleason (976 Posts)

That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.