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It’s been really nice to be home. After a week and a half in a hotel in a foreign suburban land, shuttling between hospital and clinic, having various fluids either added or removed from my body on a daily basis, being far from everyone I know and love... yeah, I was ready. After a long flight, I got back to Seattle late this past Monday.

This week, I got myself into my daily routine...

... worked on some nerdy nostalgic projects ...

... enjoyed some time outdoors and laughed at some boat names ...

... and the best part, got to hang out with my two favorite ladies again.

The treatment goes on, day by day. I’m now 10 days in, and the difference I feel from before the treatment has been ... shocking. Before leaving for Bethesda, I was having a lot of discomfort. It made it hard to sleep and to be out moving about the world for too long.

And now... in many ways I feel better than I have in weeks. The side effects from the treatment have been minimal, especially in the first seven days (when I was taking a high dose of prednisone and so felt pretty jacked). It has felt almost, just almost, like normal life — maybe with some extra aches and fatigue.

I know the treatment is working — because I have literally been watching the tumor shrink by the day. No joke, not an exaggeration. Two weeks ago there was a hard mass sticking out from under my rib cage — and it’s hidden now. It’s unbelievable.

I’m obviously really, profoundly, abundantly grateful for how I’m feeling right now. And there are some other feelings in there too — I know this sounds silly but as I read stories from other MCL patients going through multiple rounds of chemo or feeling waves and waves of side effects, I feel guilty for having it so easy right now. There is a long road ahead (16 more weeks to be exact) and a lot of uncertainty between here and then. But I will take this, as long as I have it.

Of course there’s no promise that things will stay this way. The cumulative effects of the drugs will add up over time, and in the next cycle I’ll be adding a new and powerful one to the daily regimen. So I’ve just been trying to focus my energy on the “now” — to be grateful for what I’ve got, especially here and today. Today is good. Tomorrow might not be. But that’s OK, because today was good.

The other day I got some amazing news from a fellow ViPOR patient (who just completed her treatment last week):

This gives me a lot of optimism and I hope I can say the same just a few short months from now. For the sake of everyone fighting cancer right now, and for all those that will follow, I hope this study (and others like it, especially with these highly targeted drugs & treatments) will end with real cures, or at least treatments that will take these cancers from “terminal” to “chronic”. No one should have to suffer just to get better. With luck, chemo and radiation and relapsing cancers will become just part of medical history.

I am feeling uncertain — not really fearful, maybe a bit anxious, mostly uncertain — about my next trip back to DC on June 29. In this next cycle they will start me on Venetoclax, arguably the most potent of the cancer-fighting drugs in my regimen. Because of the risks associated with the drug (particularly for tumor lysis syndrome as the cancer dies off), I’ll be inpatient/hospitalized at the NIH for two full weeks. This time will allow them to ramp the drug up slowly, monitor my progress, take multiple blood draws for testing throughout the day, and I’ll be close to care if anything goes sideways.

While it’ll be the most dangerous part of the treatment, I know I’ll be in good hands and that I’m in good company — only a couple other patients in the trial had major issues with this cycle, and even they were able to get through it and get back onto the treatment. So fingers crossed. Mostly I’m just hoping being contained in the hospital for two weeks doesn’t drive me insane. Esther and my parents will both be visiting throughout my time there, so that will help a lot. And hey, if you happen to be near Bethesda in the first couple weeks of July, come say hi.

I want to end this one just by saying thanks to everyone that has been supporting me, and Esther, through this. I know it’s not always easy to know how to “show up”, but I feel loved and supported through your text messages, your emails, your visits, your book recommendations, your memes, sharing your own experiences, and all the other ways you’ve been there for us.

And from the Spoke Too Soon Department... Well, right as I was wrapping up this post, this morning I burst out into a rash. I am visiting my parents for a surprise Father’s Day visit and this morning we sort of watched it develop before our eyes. Sooo, yeah—this morning I had a bit of scramble, called my team at the NIH, exchanged some photos, got a call back from one of the Lymphoma fellows on-staff, etc... turns out it’s a common and mostly expected side effect at this phase in the cycle. So I guess I’m adding Benadryl to my “daily routine”... wooooo. Not the end of the world. Today is all right. Tomorrow might not be. But that’s OK, because today is all right.