I've been slacking on the blog again. Noted. List of pathetic excuses follows:
First of all, I needed some emotional recovery time from the CNS incident. Second, we closed on the new house a day or two later and realized we had a lot of things to do in a very awkward amount of time, and nothing seemed to be happening when we just sat around and mused about it. Thirdly, medically-speaking, I don't think a whole lot was really happening the past while. My counts have been generally stable, I had another IVIG infusion, my creatinine levels keep trending high which means I'm supposed to drink even MORE water (ugh, I'm already at 3 L / day and am up half the night peeing 3 L of water accordingly), and that's about all I can think of. The sun and warm weather has improved my mood and motivation greatly; however, I can't actually be in the sun because it triggers my cGVHD and little surprise rashes pop up here and there after exposure. They go away on their own, but they are unsightly. And you can imagine the absolute burden of having something unsightly saving your life. Sheesh! Sometimes I should just not talk.
Now, we are on our first tentative long-ish vacation in the past year and a half (which may not seem like a long time between vacations, but if you know our traveling proclivities prior to my dx, it IS). We just don't get out of Sac much anymore. Well, besides Seattle. And a weekend trip to Carson City and Tahoe. How about let's just get on with it. We are wrapping up a week long trip in Santa Barbara and San Diego and I am so sorry, LA, we just couldn't fit you in this time. Not only do I fear Brett literally exploding into a million bits of rage on the 405, my medical/energetic leash is a little shorter than I had daydreamed about, so we have had to limit our activities substantially...
For example, I did not expect to spend the first night of my vacation puking in a garbage can in a hotel room in Santa Barbara. There may be those of you thinking, "Yeah Jessie! Rock on!" But it pains me greatly to say it was not like that. At all. It was about 7 in the evening, the sun wasn't even down, and it came out of nowhere as usual. In fact, the first honking event was in my good friends' (and hopefully still good friends, Yaskos!) bathroom, post-dinner party. The vomiting continued into a Ziploc bag during the car ride home and ended with me with my head in a trash can alone in our hotel room; the box of kleenex for wiping my nose and mouth having fallen into said defiled trash can, and Brett down at the beach filming our child falling quite traumatically into the surf. It was a low moment.
Needless to say, at least we all slept well that night.
But by incorporating daily naps, ample shade, and ready-at-hand anti-nausea medication into our travel plans, things have been going a lot smoother. Luna is having a blast as there seems to be a toddler jamboree, beach, and/or Easter-egg hunt at every stop; Brett and I are having a blast spending time with so many of our friends and family (and mostly not puking in their houses); Topo is back to running amok with his friend Carly; and the overall change of scenery and break from house projects is doing us all well. I still feel like there are more people I wanted to see, and with the people I did see, none of the visits seem long enough, and there are not enough senses to take in enough of the beautiful days that we had...and people, do you realize how much f-ing life there is to be lived in every dang moment? It's ridiculous. By the way, Luna revisited the ocean and frolicked about with no problem, even falling down and bouncing back up. Whew. Anyway, I'm sure the rest of vacay will be more ups and downs and if I haven't learned this by now I deserve to be smacked in the head by a sock full of quarters by the next person I meet (the point here being I'VE LEARNED IT. Don't get all excited).
There have been some decidedly darker days in the past few weeks since I've written. Mandi Schwartz, who I've written about before, died of leukemia a couple of weeks ago. She was 23. She survived a long time without treatment for AML, no small feat. I still have our shared journey so vividly in my head. Another woman I had been communicating with online through the Leukemia and Lymphoma Society lost her husband to ALL; he was my age. They have a small son Luna's age. And most recently, 3 young people in my hometown have died unexpectedly, in diving and car accidents (including the son of a dear family friend). There doesn't seem to be anything to say that is adequate. I just want to be able to send their families and friends love and eventually peace. It makes my heart hurt.
So anyway, that's it from my end. I will try not to be so derelict in my blogging responsibilities again. Having said that, I also guarantee you that I most certainly will be, especially since we'll be moving next week. And so it goes.
I hope everyone is enjoying the tentative onset of spring.
Love x1000,
~j
