2018 September 20: Six of one and...you know the rest

It's been a while. To be honest, the rest of the summer brought me some tough stuff to work through. I lost several people I care about, and people I care about lost people they care about, and that, sometimes, is just as hard. I was going to write about all of these losses but every time I try, I stop and close up my computer, so clearly I am not ready to do that. Instead, I'll tell you my latest health news. Because that's fun. 

Do we want the good news first or the not so good news? Good news? Great! That's the way I prefer it, too. The good news is that my poor skin and toes and hair and (fill in the blanks with all of the parts and pieces that I have which have suffered due to irinotecan and Vectibix here) will now be getting a break. It's true! I'll be able to walk around without makeup on and not scare the locals! I will be able to skip moisturizing routines here and there and not wind up with toe infections (oh, the toe infection - I probably should tell you about my visit to the toe doctor, who was clearly the Marquis de Sade disguised in sneakers and a disarming smile) and skin peeling off my face in earnest, leaving behind scabs and patches of weird pigmentation. And my hair will stop falling out! What's left was trimmed into a little bob about 6 weeks ago, and it's still holding in there, but just barely. Tiny ponytail holders are the order of the day, and baseball caps are all the rage here at Chez Dr. J. 

You can probably guess the other half of this news by now: I'm getting all of these breaks because my last set of scans (a week ago) showed some growth in my existing lung spots, and so we've decided to try another approach. The difficult part is that I have now failed several of the regimens that I really thought would hold things up for a good while, and, five and a half years into this adventure, I have been through most of the standard of care options. It gets a bit trickier now, figuring out what to do.

Now, please don't send me pity faces or so sorry's or cats hugging or whatever the hell might seem like a nice comfort but you'll realize later was, perhaps, wildly inappropriate. Do not shake your head and even consider giving up on me.  I'm not packing it in or anything, and the bottom line is that even though there was a little bit of growth, my existing lesions are smaller now than they were 8 months ago. Additional good news: scans did not show any new areas of concern, which is also fantastic. So, this year so far has been a net positive for my health. Yay! 

Right now - like, RIGHT NOW - what I need, though, is your support, your belief in me and my medical team, and your strength.  I have important, sacred work to do - none more important or meaningful than shepherding my two extraordinary children through to adulthood alongside my best friend, Nick - and I intend to be around for years in order to do it. I've had to take a lot of deep breaths this last week, because I don't like changes to my regimens and I really don't like the thought of growth, and I get hella nervous that the next treatment will not work and then my mind goes to dark places and it's all I can do not to hide under the bedcovers. (Luckily, though, I launched myself into a regular yoga practice again at the beginning of the month, and so breathing deeply has been a comfort and a joy.) So I'm in an uncertain place - not so much because of the scan results, but because I haven't started my new regimen (which will be CAPEOX - Xeloda and Oxaliplatin), and I cannot for the life of me remember the day to day of what it was like to take Oxaliplatin. I mean, I know it sucked and I vividly remember the hand and foot syndrome and the neuropathy in my fingers and toes and my throat (oh, cold things, I'm going to miss you!) and the first bite syndrome and the way it hurt to cry...but did I sleep a lot? Did I have any energy? I can't recall. I just have to wait and see, and I hate waiting and seeing. I am not and never have been a patient person. 

To recap: skin and hair will be glowing and shiny. I'm moving right along and 2018 is still a net positive for my health status. I'm keeping my head above water, but as long time readers of this blog are aware, I'm also an anxiety ridden human and can talk myself into some pretty serious agoraphobic tendencies, so support and optimism and funny is good - funny is great! - and inviting me to do stuff even if I say no is also good. And always remember the ring theory: 

Also, if you see me out and about and I'm using my oxygen, you can just pet O2D2 (that's my portable oxygen bar which my sources tell me is the newest, chicest trend and I wouldn't be surprised if there are tiny oxygen machines in all the Oscars swag bags this year) with permission and then, you know, act like I'm a normal human being.  My lungs are compromised a little bit due to actual cancer, but that's not the reason why I use oxygen. Rather, I had pneumonitis and broken ribs and have a pleural effusion and terrible allergies and my lungs are really sensitive as a result of all this and so I need good air quality up here in the Mile High in order to breathe well enough without supplemental O2 not to get all dizzy and sick. It's not a personal setback if I have it - it's just a reflection of that day's factors all taken together.  Your kids, of course, are welcome to look and ask questions and touch O2D2 as much as they want to, because that's how they learn that it's no big deal! 

Thank you and namasté, my friends and loved ones. I really do love and appreciate all of my blog readers.