When I was a journalist I learned about the concept of “Africa fatigue.” That’s when you read and hear so much about the seemingly endless horrible things happening there (famine, genocide, corruption, diseases, flooding, holy wars, institutionalized rape, etc.) that you become inured to it over time. “Really, another 50 bazillion people died today in [insert African country name here]? Shocker.” Harsh but I’m pretty sure we all do it to a degree, if not with Africa than something else — there’s only so many times you can experience something, much less something happening so far from you that you aren’t experiencing it first-hand, before it becomes commonplace and then boring.
I tend to get “cancer fatigue” a bit. Part of that lies in my coping mechanisms and the rest is simply the obvious — I HAVE cancer. I don’t need to spend 24-7 suffering personally AND time focusing on it in a general sense. I just don’t have it in me.
For months I’ve lurked on Twitter, quietly following the most intelligent voices I could find so that I could keep up with the latest on Myeloma. In the last month I’ve started interacting more and more with some of the Doomed community on there as well, which has been fairly cathartic but hard at times. You try waking up and hitting Twitter to surf yourself awake only to read 20 stories in a row about child cancer victims who’s doctors have given up on treatments and told the parents “enjoy what time you have.” Maybe you can handle it but I just can’t. It’s too goddamn much, especially as a parent.
If you’ll excuse the minor digression, I actually put my foot down Friday. One account I followed posted up an article that had as a main photo the inside of someone’s rectum. I’m sorry but I’m not a doctor and I have no desire whatsoever to see that anywhere. Use your fucking brains folks, if I wanted to see goatse I’d Google it.
* Not actual goatse pic. Don’t Google that term either, you’ve been warned.
I also had to un-follow a widely-followed person in the cancer world that just had one too many arrogant jerkstore posts last week. I do my best to keep away from those folks especially in the medical field, and the daily “I’m so amazing and this person’s research sucks” posts got to be too much. If you are going to be a dickhead online at least be funny.
That said I’ve also learned a ton and “met” some really amazing folks. I tend to follow people who are original, interesting and don’t just have a feed comprised of 100% re-Tweets. It’s a strange thing that seems almost an invasion of privacy at times because this stuff is so personal and rarely seen elsewhere. Normal people generally don’t stand on a pedestal and unzip their fly in my experience, and those that do regarding their own disease seem to usually have this amazing mix of vulnerability, resignation, sass and communication skills that I never tire of. It’s real and as honest as it gets.
See? I’m weird. Same reason I sit outside in lightning storms to feel small in the face of such uncaring ferocity as a good, shake-the-house thunderstorm. Cancer, and the stories about it, remind me of that feeling as well.
Everyone feels like a king until an uncaring universe squashes you like an ant. That’s the major lesson that drives home. Keeps you humble, I’ve found, but what’s more it’s a stepping stone on the path of learning how to deal with Random Number Jesus.
I had to take a break this weekend, however. In my zeal to be supportive and be involved I think I accidentally knocked a hole in the emotional wall that keeps me sane through all of this. This past week’s “real world” stuff didn’t help either with the protein counts, etc. (read last entry for more details on that). I just couldn’t get Myeloma out of my head this weekend no matter how hard I tried. Things feel precarious right now, like I’m a misstep or bad test away from having this go completely south on me. I’m trying to have a good attitude about it all but it’s difficult to ignore a lion roaring right in your face — constant back pain, constant exhaustion (except Saturday when I think that transfusion kicked in and I felt energized), stress about pills (long story I’m stuck in the middle of today with my Revlimid prescription and a Fedex delivery person who forged my name), stress about the PET scan, etc.
Sighville. Pandora, shut your fucking box please. I have to function today.
Well that’s the core dump for the weekend. Not every entry can be puppies, rainbows and ‘graphs that flow into one another and have a pithy tie-up at the end. Now I need to transition so I can mention a few quick things.
But the latte hasn’t kicked in so insert your own damn transition and transitiony music here.
I wanted to share three things I found on Twitter in the last week. Which I’ll do with bullet points so you know it’s important. MAH GOD HE USED TEH BULLET POINTS, IT MUST BE SRS BIZNESS:
- First, after a patient Twitter chat I took part in last Friday I was shooting the shit with a participant (@lifeiskitsch) about the X-Files and playing the cancer card when David Duchovny (verified) joined the chat after a particularly heart-breaking tweet of hers caught his eye (we were tagging him and Gillian Anderson in our discussion). He said he was sending her a signed copy of his book and he’d like to meet her at one of his upcoming band’s shows. Too fucking cool. Really made me happy for someone I’ve never met, which is a nice feeling.
- Second I had a discussion via Twitter with @mpg61, a Myeloma victim since 2011. Matt has an amazing blog with more pictures and less f-bombs (but enough to be respectable). I’m guessing without knowing him that “victim” is the last word Matt would want to be called so no disrespect — you may actually know of Matt because even though he has MM, he climbed fucking Kilimanjaro in March and helped raise over a quarter of a million with his teammates for Myeloma. Unreal. I struggle to go to Starbucks most days and won’t get on planes. Well-played Matt and thank you for sharing your story and blog with me (and everyone else).
- Third, I came across someone relatively new to the tribe’s brain cancer wing, @nateroni1984. Her story is moving, for sure, and her Instagram really touched me. Why? It’s a combination of everything I remember about those first few months of Myeloma — trying to make light of the horror, the tears involved when reality seeped in, putting on a brave face for others, you name it. We all had this experience in some form and her pictorial and Twitter relation of it is both saddening and poignant … but topped with just the right amount of sincere hope that make it such a must-read. Natalie I’m sorry btw I didn’t ask for your permission to write about you first — apparently on Twitter you can’t DM people who aren’t following you or visa versa or something and I figured if you’ve got it out there a few more eyeballs won’t hurt. I’ll remove this is you prefer, however.
I really need to sit down for a few hours and redesign my blog to have a links page, etc. My immediate mental “yeah, someday” procrastination doesn’t work as well with cancer, I’ve found. I also need to gear up for this week as it’s not only Dara week but I have a meeting with my oncology team at CBCI where we’ll be discussing my latest Myeloma metrics as well as the results of my PET scan. Which I’ve already seen (the report anyways) and have zero idea what it means:
Mediastinal blood pool SUV: 2.1
Liver SUV: 2.2
PET CT fusion images:
SKULL BASE and NECK: Normal radiotracer activity.
ABDOMEN and PELVIS: Normal.
BONES: Diffuse increased marrow activity likely related to bone marrow
stimulants. No discrete bone marrow lesion.. Mild diffuse increased
radiotracer uptake in the left calf medial posterior muscle likely
relates to physical activity.
No scintigraphic evidence of active myeloma although bone involvement
difficult to rule out given the presence of diffuse increased marrow
activity. No soft tissue disease.
Likely changes related to physical activity in the left calf.
I guess it was too much to hope for to see a report with just two check-boxes, “fucked” and “not fucked yet.” Instead my interpretation is something is stimulating my bone marrow, probably the scintigraphic evidence shoved up my ass.
I didn’t take a lot of science in college, sorry.
Oh one last note, kind of a gripe that I’m going to be a bit careful with because of who we’re talking about. So the IMF hosted a community workshop in Denver this past Saturday. I contacted not one but two folks at the IMF about whether there was going to be an available livestream or post-workshop recording I could watch and got no response. Whatever, that’s fine … I did send out those inquiries a day before.
Here’s my real issue. I have so many ways to stream myself playing a video game or a cam broadcast on my various PCs that it’s almost annoying. Christ I can broadcast myself from Facebook now. Really, IMF, is there nobody who can set up a simple playback stream of your workshops and links to the Powerpoint presentations? I would TOTALLY link the hell out of them. My own oncologist was one of the speakers at this one and I really wanted to hear his presentations and see his slides, but between it being my mother’s birthday and a white blood cell count so low I get hospitalized if you look at me the wrong way I couldn’t be there. Super disappointing. Charge $10 for it, I’ll pay it and you get insta-donations. Put it on Twitch, which any 12-year-old can set you up with, and there’s a donation system built in.
Seriously though get with the tech, not having this stuff available sucks nuts.
That’s it. I know this is disjointed — some days I have a point, some I just need to bleach my brain by core dumping everything here. Either way you have a front row seat so thanks and apologies are probably in order, hah. And if not for this entry than certainly for this song, my latest favorite tune to crank. Bought HoF’s entire back catalog last week and have been loving it — which is odd because generally that vocal style is annoying to me, but the riffs are so goddamn hard that it works for whatever reason. Hardcore metal is one recipe line on my “must. stop. thinking. NOW” self-therapy. It’s also the only music style I’ve found that really does get better the louder it is.
Have a \m/ Monday.