Still waiting on next steps…

I WILL get through this.

But I’d be lying if I didn’t confess to the fact that I’ve been having some serious anxiety the past week. I’d have thought that with time things would smooth out and I’d get more comfortable with this situation. But the truth is that as I’ve been recovering my energy and strength (slowly but steadily) I’ve been feeling more anxious. I’m not stressed because I’m feeling bad; I’m stressed because I’m feeling good. Not that I’d want this but paradoxically I think my situation might be easier if I felt worse physically. The differential between how I feel and what I intellectually know about my condition is widening (feeling good, but complicated cancer).

The other piece is that the conversations I have seem to present an ever increasingly bleak outlook – or my mind is spinning it that way. For example yesterday I called the lymphoma & leukemia society (LLS). I spoke to them briefly before starting first line chemo but didn’t get much out of it. Now that I’m further down the treatment rabbit hole I figured I’d give it another try. I can tell there are knowledgeable folks to help guide decisions and talk through situations. I spoke with a very knowledgeable person for 15 minutes to explain my status and talk things through. I’d have thought the path I’m going down is somewhat well understood – one would think that first line treatment has to fail fairly often… and it’s not like NHL is a rare disease (though it is highly variable with something like 60 subtypes). But I was thinking there are more options than may actually be the case, e.g.,

Me: so pre car-t therapy (which was only FDA approved for third line treatment of my disease in Q4 2018) what was the standard course of treatment if second line failed?

LLS: various clinical trials

Me: Really? That’s it? There was no real third line treatment?

LLS: Well that’s why everyone is so excited about car-t therapy. Of course we have no long term data. And there are extremely long wait lists to get the treatment so doing this as second line treatment might be worth looking into if that’s an option…

As a next step LLS is going to support me by connecting me with a clinical trial coordinator. My understanding is they help navigate this world, which includes looking through which ones might be relevant to my specific circumstances. One more arrow in the quiver. The fact that I’m even here writing about this, considering trials is frightening, one of my worst fears. Like in the past when I would think about horrible scenarios this is definitely up there, along with various wartime situations not worth discussing. Frankly keeping this blog has been a lifesaver for me to vent this stuff in a hopefully productive path rather than spinning my brain like some tether-ball around a pole of fear.

Then yesterday I lost my cool on the phone with Kaiser. Turns out I won’t get genetic tests until next Monday, the 21st. That’s over 3 weeks post surgery! While it takes 2 weeks to run this (FISH) study I do not understand why it would take a week to send – or at least start processing – this. I could certainly understand if there was there some backlog due to holidays or some other reasonable explanation, but I have yet to hear it despite my inquiries. I feel like I’m in the dark about what they may (or may not) be working on. It’s incredibly frustrating as a patient trying to quickly sort out treatment options.

Meantime I’m focused on keeping calm amidst this 2 front war: body on one side, medical systems/decisions on the other. For the past week or so I’ve been feeling quite strong (now that I can move mostly without pain in my mid-section from surgery) so I’ve been starting to exercise again. That’s always been my standby solution to challenging times. So I workout and visualize cancer as the enemy. I’ve been doing hard intervals on the bike and some strength training. Sometimes I’ll close my eyes and grind out a hard interval while I visualize defeating the cancer. It’s odd, I’ll admit but it definitely helps address the anxiety. And it’s a great mechanism to help me to assert a feeling of control over this situation; fine, I’m not into judging myself much these days. Of greater importance I’ve noticed that over the course of chemo I gradually drew down my strength reserves. I’m doing what I can to build up those reserves before jumping back in.