Saturday, June 20, 2020

Ticking Away the Moments that Make Up a Dull Day

Every year is getting shorter never seem to find the time
Plans that either come to naught or half a page of scribbled lines
Hanging on in quiet desperation is the English way
The time is gone, the song is over
Thought I'd something more to say

Time by Pink Floyd

Every couple of days, I think about updating this blog. And every couple of days, I stop thinking about it. I either have nothing to write, nothing to say and close to zero interest in sitting still and trying to crank something out. Focus is hard to come by of late. And really what do I have to say? We've been on lockdown for a few months now. My immune system dictates I be careful. I very rarely leave the house. I'm not necessarily bored. I do a long walk almost every day and do some exercises at home. We're keeping busy but I definitely have more time for my idle mind to stray. I will say, I'm much more acutely aware of how much myeloma has changed my life.

Myeloma: My numbers continue to look great. Creatinine is 2.3, meaning my kidneys are chugging along. Light chains are in the single digits. On the other hand, for the past month or so, I've been particularly tired and achy. A bit reminiscent of my most recent relapse in 2016, when I made the switch to darzalex. I was scheduled for my monthly infusion two weeks ago, but in addition to the aches, anything I ate left a bitter taste in my mouth. I told Dr Phan on our telemedicine call the day before my scheduled treatment and we (he) decided to delay my treatment. His office protocol, for someone with two or more potential Covid symptoms, dictated that both Leslie and I do two Covid tests a week apart. He won't allow potentially infected patients into his office until they have two negative tests. In normal times, I'd have put up a fight but this time I didn't. He's protecting his patients and his staff and it made sense. My first test was fairly easy and not a big deal. Leslie, though, wasn't thrilled with her first test. That switched with test number 2. It was no big deal for Leslie, but for me, it felt like they jabbed my brain with the swab. Not pleasant. All the tests were negative. A delay in getting my second test results meant I had to postpone my infusion another week. With the added delay and since I hadn't been feeling well, I decided to do my myeloma labs again the other day. The results are in and my numbers still look great.

I haven't seen Berenson since the lockdown started. Given the persistent aches, I have an appointment with him coming up. He does a different blood test that tracks pretty well with how someone's myeloma is doing. I've decided postponed my infusion until after I see him. And I might just wait to get back onto my normally schedule, meaning my next infusion is in two weeks and I'll be back on schedule with a good friend.

Vikings: Just weeks before the lockdown started, the Vikings traded Stefon Diggs, their star receiver and my favorite Vikings receiver since Randy Moss. Then they re-signed Kirk Cousins, who's a nice guy, but maybe not the greatest quarterback. This broke me, after 50 plus years of Vikings obsession. I responded by doing a bracket style tournament to find a new team. The winner was the Carolina Panthers, mainly because they signed Teddy Bridgewater, who I wish, wish, wish was still the Vikings qb. But Carolina just didn't feel right as my team. So I chatted with my sister in law and landed on the Chargers as my team. They're local, cool colors, and are often underdogs, which I go for. This was going to be my direction. I felt really good about this. But I just couldn't let go of the Vikings. They had me at "Skol".  Plus my Vikings fandom has translated to a love of most things Minnesota, the 32nd state. It's a part of me and I can't abandon that. So I've gone back to the Vikings. But I think it was important to go through this process. We needed a break and now our bond is stronger than ever. I'll will cheer for the Chargers as my number two team. Growing up I loved the Houston Oilers. Loved! Then they moved to Tennessee and changed their name. Screw them. So I've been devoid of a number two team for decades. Now it feels good to have a one and two.

Lockdown: Leslie and I are doing good. We handling all this pretty well, she's diligent about keeping me safe. We both have mental ups and downs. We miss Gracie like crazy. I've pondered another dog, but I/we just aren't ready. She was such a huge and important presence. I can't imagine another dog moving in here.I like dog visits, but....

And then as I said, I've got too much free thinking time. And for the first time since being diagnosed, I'm wondering if this is as good as it gets. It wouldn't be horrible. I'm being creative, happy and healthy. But is this it? Feeling normal, doing normal things, etc, etc. Are these static?

Who the heck knows.

I hope you all are safe and healthy.


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  2. Ugh, so true Matt. We've been "isolating" for a long time with Myeloma... well me more than you, as I think your WBC runs "more normal" than me, but the "forced" virus stay at home, is different than our "by choice" stay at home... Yes, Myeloma has changed us, and I still can't get over it. I go from accepting to being pissed. Feeling somewhat ok, to feeling like a total cancer patient. Just sick of feeling sick all the time. I'm so happy you and Darza get along so well. I had a good run with Darza Pom Dex. Wish I could go back to it. This Elotuzumab Emplicity is causing me all kinds of nerve, muscle pain, unless it's the good ol Revlimid? But I doubt that, as I never had "pain" with Rev. Did you? Anyway, hang in there warrior buddy, we'll get together asap. Let me know when your next appt with Berenson is, maybe we could meet up then? Great "golden years of retirement" for us, right :((((( xoxo Julie

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Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.