Thursday, February 18, 2016

A List of Things

I tried writing a comprehensive paragraph, with lots of information and what-not. But it was absolutely terrible. I think I will have more success with a list today. So here is a list of things, in no particular order.

1. Most importantly, we're going to get chickens soon. I'm super stoked, because lately I've been sort of obsessed with getting back to the homesteading/off the grid sort of lifestyle that I grew up with. They will be great for recycling food that I have to throw out if it gets too old (old food+neutropenia=infections) and I just love how entertaining they are. Doctors orders, I just can't clean their coop when I'm neutropenic.

2. On that note, we also are going to build some more raised beds for the garden, because I bought this awesome survivalist package with 11,000 seeds in it. I'm pretty excited to grow some food this summer, and to feed the stuff that we don't like to our lovely future chickens. I'll have to wear gloves when I'm digging in the dirt, and I'll do my best to wear sunscreen even though I hate it. But I'm just so excited, and I am loving the fact that winter is almost over!

3. I haven't even finished my intensive chemo yet, and I'm already worrying about next school year. I'm worried because for the entire 2 years I am on maintenance chemo they will be trying to keep my ANC at around 750. At it's lowest, it was 6 (which is super terrible) and right now my ANC is almost 2,000 which is on the low side of normal. But 750 is still considered slightly neutropenic, and I will still be prone to infections and viruses.

4. A couple weeks ago one of the nurses at the clinic told me "I've never seen anyone with such terrible lab results look and behave like an actual human." She was thinking this when both my ANC and platelet counts were lingering below 10, but didn't tell me until my ANC was back up over 1,000. This made me pretty proud. What has my life come to?

5. On Monday I finished my last chemo of this phase (Phase 3, Interim Maintenance) and the whole phase treated me pretty well. I had an escalating dose of Methotrexate every 10 days, and got 5 more doses of Vincristine (which is more than most people get during their entire chemo protocol). My fingers are more numb that they've ever been, and I have had some foot cramping and random shooting pains in my feet and hands from the neuropathy. Fingers crossed it will go away someday- and I CAN still cross my fingers, but shredding cheese is questionable.

6. Since I will be moving on to my last intense phase, that means it's time for another bone marrow biopsy. #anxiety. My last bone marrow biopsy showed that after just 22 days of chemo I was already in remission, but had 0.001% remaining disease. My hope is that this bone marrow biopsy will show no evidence of disease, or NED. Keep me in your thoughts next Wednesday, it's a pretty painful procedure and I will know results within about 48 hours.

7. When I left OHSU in October they told me to be very aware of how I'm feeling and to be constantly checking my temperature because of my likelihood of getting a neutropenic fever. That was the only thing that could have delayed my treatment. I assumed I would have at least a couple, which could push my chemo schedule back a month or more. At that point, I figured I would probably finish my intense chemo in late May or June, just in time for summer. At this point (fingers crossed) I have not gotten a single fever or had any set-backs. That means that if all continues to go according to plan, I will be finished with the crazy stuff by the end of April!

8. Chemo brain is legit. Max asked me to wash the sheets on Tuesday, and I just remembered I haven't done it yet. So I've got to go do that. Right now. Before I forget for another couple of days.

One last phase of intense chemo to go! 

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