I don’t get out much. I’m always on the go but when it comes to having fun with adults, I usually don’t have that opportunity. My kids and I have a blast together. In fact, since Ben was discharged yesterday and we only have today off from the hospital before starting another grueling week (actually two) of hospital activity, we are heading for Idaho Springs to get some Beau Jo’s and (finally!) take a car ride up to Mt. Evans, which is the highest paved road in North America. This has been on my Colorado bucket list since the early 90’s.
I suppose I should give an update on Ben before I get started on anything else. Ben was released from the hospital yesterday after a brief bout with neutropenia and a more lengthy bout with kidney stones. Yes, I said kidney stones. From what I understand, kidney stones are some of the most pain-y-est (yes, I made up that word) pains you can have. So, add this to Ben’s “I Beat that B*tch” resume. Ben historically gives pain a very low score on that stupid pain scale of 1-10 that graduates from a smiley face to that “Jesus-is-coming-for-me” face*. It’s almost like he’s trying to get along with his pain. If he gives it a low score, it will leave him alone. He treats it like a bully, I guess. You’re just not that big of deal, pain, so just go away. Anyway, I could tell – despite giving his pain a “middle-of-the-road” five – that it was excruciating. After finally setting him up with a pain pump, the pain decided to go away. As soon as you have the tools you just don’t need them anymore.
Okay. So, tomorrow Ben goes in for his MIBG injection in preparation for his MIBG scan Wednesday. He’ll also have his CT scan on Wednesday. These are his first scans since hearing “RELAPSE” so my system just isn’t sure what to do with this information. I do have scanxiety, but it feels different this time. Thursday is our meeting with the bone marrow transplant team to learn about Ben’s upcoming bone marrow harvest. He went through a bone marrow transplant when he was three and they used most of his harvested cells for that procedure. It seems like most of the procedures that might be beneficial for Ben down the road require stem-cell rescues. Since Ben is now considered to have chronic neuroblastoma, we’re going to harvest as many cells as we can. He’ll have surgery on Monday, July 22, to insert a PICC line into each arm. He will be put under for this procedure, but they’ll hook him up for harvesting right after the PICC lines are inserted. The plan is to harvest each day until they have a big supply, and put them all in the freezer for future use. Hopefully his body will give up a lot of stem-cells so we can focus on getting him better instead of worrying about not having enough to keep him well.
Before you ask, we cannot use other people’s cells. We did save Madeline’s cord blood but we aren’t able to use that either because the stem-cells must be Ben’s. If you know anything about BMT, you know that there’s a horrible thing called Graft-Versus-Host disease (GVHD) where the body rejects foreign stem-cells. It can be fatal. It’s much easier for a body to accept your own cells, so that’s why we’re going through this harvest. I don’t like the phrase “harvesting” though. It makes me think of picking berries or corn or something agricultural. I don’t like to apply that term to anything happening to my son.
And before we know it, July will be over. After the next two weeks we’ll have a better idea of what’s next on Ben’s treatment schedule. We had nothing planned treatment wise after these initial two rounds of chemo, so we’ll have to figure it out as we go – or as the beast rears its ugly head. I cannot wrap my brain around the term “chronic” yet, I just don’t understand what it looks like at this point.
So, when my ex-husband asked me if I’d be able to use tickets to see Barry Manilow at Red Rocks (he’d received them for free from his place of employment) I jumped at them. My dear Paula (see my prior post titled “barefoot” to learn more about this extraordinary individual) was going to be in town to visit me for my birthday. Yay! FUN with an adult! And adding our former Ohio University mod-mate and recently minted Coloradan, Rhonda, to the mix just seemed like kismet. It was all meant to be. So, off we went. As we drew closer to the open-air venue, the rain moved in. A drizzle turned into a downpour, which turned into lightning streaking across the sky. Paula consulted Weatherbug and we made the decision to give it a shot regardless of the worsening conditions. I mean, my college pals needed to see Red Rocks. And who wouldn’t have fun singing Copacabana? And I showered! I put on makeup! I’d made an effort for crying out loud! Must. Go. To. Concert. We walked up the massive hill. We found our seats. The lightning kept happening with greater intensity. A spokesperson for the venue made the announcement of a delay based on possible threats of lightning activity. In other words, Barry didn’t want to get electrocuted. Neither did we. So we left. I have to admit that I was severely disappointed. I had to focus, however, on the fact that I was with two people who meant a lot to me. It might not have turned out how I planned but it still turned out. Barry didn’t perform anyway. Being 70 years old and at a higher altitude, I’m sure he didn’t feel that any rendition of Copacabana was worth tempting death.
By the time I got back to the hospital to retrieve my car, the rain had stopped. I tiptoed into the hospital at 11 pm just so I could peek in on my sleeping children and take them the glo-sticks we’d received at the concert (Thanks for giving yours up, Paula!) Ben and Madeline were laying in bed, wide awake, while Matt snoozed on the plastic couch. I handed over the glo-sticks, gave them smoochies and went home to hang with Yoshi.
I got a text from Matt shortly after my visit that Ben woke up in severe pain. This was from the suspected (now confirmed) kidney stones. I had just seen him a couple of hours before and received kisses from my sweetness. How could things change so dramatically in such a short period of time? And, in being nine years into this ridiculous life with cancer, why was I so surprised? Haven’t I learned my lesson that things rarely work out according to plan?
I walked over to Panera early the next morning to get my ailing son a croissant – his current favorite treat. As I was walking back toward the hospital in my downtrodden state, the sprinklers came on and drenched my legs. I held the croissant high above my head – like Gollum would protect his precious ring – and started humming a song to get me through. I’m already soaked in this crazy mess of a life. I can’t change it. Sometimes I wish for something completely different but then change my mind with the understanding that it could always be worse. This life doesn’t define me, but it is molding and shaping me. I can live with that.
And as I realized I was humming “I Made it Through the Rain” by the iconic Barry Manilow as I walked through those sprinklers towards my ailing son holding a croissant that might make him feel a little bit better, I felt a little bit better myself.
* See a greatly improved pain scale with the “Jesus-is-coming-for-me” option at hyperboleandahalf.com.
Oh good. I’m glad the link is working. I was getting a weird warning that it wasn’t connecting. 🙂
Didn’t see the “barefoot” post.
I had a blast……it was fun watching you!
Madonna, in the March 2013 archives. 🙂
Love you Sarah~can’t smile without you! Humming Barry does a body good…my precious;)
You never cease to make me smile and cry in the same writing….i love you
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