No longer playing by the rules.

I’m torn by my attitude lately. On the one hand I’m wearing the masks outdoors like some stock video of Chinese city workers commuting on CNN, hand sanitizer in a pocket and avoiding all sorts of immunodeficient evils that you are supposed to avoid after car-t treatment or a bone marrow transplant.

But there’s this other part of me that looks at my daughter and thinks “fuck that, and fuck that life.”

I did that while still in Nashville, going to the zoo with Ari. I wasn’t going to go and was ready to just sleep all day but she seemed so sad when I tried to explain it. Little girls just have that guilt trip voice down pat, where you feel like you are some barbaric monster about to ruin their lives and creating a moment they’ll be telling a therapist about somewhere down the road. So I put up a tiny bit of resistance and then just said ‘what am I doing? Screw it, I’m going to the zoo with my daughter today” and she just lit up, jumping around yelling “daddy’s coming to the zoo! Daddy’s coming to the zoo!”

And outside of fucking up my shoulder when I accidentally fell down, we had a wonderful day. Maybe it’s the reason I ended up back in the hospital for a few days with pneumonia, I don’t know.  But I know I’d make that same call again in a heartbeat.

I also went swimming with her a few times in the hotel pool.  You should have seen her eyes light up at that prospect. My wife was super surprised as well, but as I’ve said I changed last year. Patient or not, deathbed or not, I’m tired of watching what remains of my life coast by from uncomfortable beds and zombie’d out from the painkillers. Fuck it. I want to go diving soon as well, although my immune system is not ready for that yet (or even close).

This car-t treatment may or may not have worked.  We got super-preliminary numbers last Friday that looked decent, anyways: on May 22nd last month I had a m-spike of 3.02, which by June 15th (car-t cells infused on May 29th) had dropped 25% to 2.27.  I should get solid preliminary numbers this week or early next when they’ve processed the bone marrow biopsy from Wednesday (ouch!), skeletal survey, urine and bazillion vials of blood (I posted a pick on Instagram and Twitter).

My weight has fallen again, although I expect that to rebound as my appetite returns (assuming it will). The food at Sarah Cannon sucks syphilitic monkeys nuts (sorry, Sarah Cannon “chefs”) but the stuff was almost inedible. I ordered out when possible but wasn’t super hungry, and after I got out my favorite places were inaccessible due to my immune system (salad bar at a Brazilian steak house, sushi, etc.).  If that doesn’t make sense, while you are immunsuppressed you aren’t supposed to eat raw food, food that’s been sitting around or vegetables and fruits that haven’t had to be peeled (i.e., may not have been washed properly).

Ah well.

Anywho, outside of gastroenterological / immune system concerns … I’m sick of existing like this. And that’s really what it’s been … just an existence, a survival.  This having myeloma ridiculousness isn’t even living. And I’m tired of this disease not only dictating most of my life but getting to weigh in on my relationship with my daughter as well. Having her out in Nashville the past few weeks, taking her to Jamba Juice every morning I could and sneaking in some Dunkin Donut trips too, talking constantly, etc., made the whole experience a pleasure instead of a pain in the ass. Except literally (read: bone marrow biopsy). I even Jerry-rigged the TV in the suite to allow my laptop to work on it so she could watch her shows on Netflix and my Plex server in the hotel. This whole deal has brought us closer even though towards the end you could tell she (and my wife) had had about enough of living in hotels.

Definitely not looking forward to dealing with my parents when I get back into town. They didn’t even bother visiting while I was in Nashville for the five weeks we were in town. On the other hand the programmer and personal friend at our family company has come out twice from Florida, two friends of mine from Colorado came out for several days to hang out, and even my wife, who I’m still in a rocky place with, came for the entire 3 weeks I was out of the hospital (1 before and 2 after, ending when we left together). I had cousins twice removed emailing and texting. Yet I have heard nothing from my own parents.

So yeah, that should be a fun reunion.  Yay for family businesses.

I wanted to thank an online friend here as well … Pam, thank you so much for the card. Not only did it make me laugh but I feel like an ass for not saying “thank you” earlier … found your opened card in my paperwork file in my computer bag (where I saved the important stuff from Nashville so I wouldn’t lose it) today and realized chemobrain had struck again and I hadn’t sent you a personal thank you.  So from the heart, sincerely, thank you!

Anyways, back to what I was talking about. Going to the zoo in my masked face did turn out to be a gift-in-disguise in another way as well, as a wonderful woman walked up to my wife and I and asked if I had had a transplant. Turns out she has myeloma too and we talked for a while, promising to keep in touch with each others’ blogs. This has been a trip for things like that. Also although she still hasn’t added me as a friend (lazy fucker) on Facebook to stay in touch, I had this amazing nurse named Kristen (sp?) at Sarah Cannon with whom I really had some good talks with. She started reading my blog, which never fails to humble me, and I felt like I made a friend.  I think she’s one of the few that already gets it but understanding your patients is sooooo important, especially in oncology. She’s also one of the top healthcare providers I’ve ever dealt with, so hopefully we get to stay in touch.

Having done this now for 5 years (cancerversary is July 13th) you realize that you don’t meet that many healthcare providers that actually give a shit.  Sure, most care to a degree, but few really see you as a person. I get that, I guess. I don’t think I have a strong enough emotional wall (even before I was gifted with the true joy that is myeloma) to deal with being a healthcare provider, so I understand keeping your distance. That’s why I have so much respect for those that you can tell actually care whether you exist.

Feel like I had a ton more to write about but I’m at a loss at the moment, drained from travel and the stress and everything else recently. Being back home now (well for less than 24 hours) is of course surreal after being gone for just over five weeks, especially with the scanxiety of the car-t initial results as I try to get all of the receipts collected and organized for insurance companies and for the first night in 3 weeks haven’t had to sleep on a sofa bed (Amy and Ari got the comfy bed, I martyr’ed myself much to my and my back’s chagrin). Did this work? Or are we at the same place with lower numbers? Why do sofa sleepers suck so much? And why the fuck does Nashville water smell like the 6th ring of Hell to me?

Seriously, it’s gross. Like dead fish gross. Can’t tell you how happy I am to be back in the land of water that doesn’t smell like ass.

I dunno. My mind is barely functional right now and I’m walking around like an automaton with a limp just going through the motions. Productive but not really here, you know?

Well fingers crossed. I did the trial, fought the fight for future myeloma victims if you want to look at it that way. I hope we’re all happy with the results.

 

Author: uwfacepalm

Father, husband, portfolio manager, cancer victim (multiple myeloma since 2013). Trying to navigate this goddamn disease as best I can while enjoying what time I have left via those relationships, friends, the UFC, gaming, MMJ, diving and helping teach it before this all went down as a PADI Assistant Instructor and a Dive Guide at the Denver Aquarium (well, before my white blood cell count went to shit thanks to the chemo/disease).

10 thoughts on “No longer playing by the rules.”

  1. Hi Rich,

    I am the woman you met at the zoo lol (Nicole) and you didn’t look like a freak in the mask. I wear a mask all over the place too. I had to after my heart transplant in March and now with my stem cell transplant. I completely understand your feelings and emotions. I have a little boy and I honestly think he has been what has gotten me through this nightmare and roller coaster I have been on. Your daughter seems to be that same spark for you. She looked so happy at the zoo when I saw her. I also understand about just wanting to “get back to living life”. All the hospital stays and doctors appointments and being poked, etc has left me kind of emotionally vacant at times. Almost seems like I just become numb to it all. But your daughter sees you as her Dad. No matter what you wear, where you are, how you’re feeling you’re her hero. You and your wife are the most important people in her life. You will never disappoint her. That’s the wonderful thing about children. They see you, not an illness, not statistics, just daddy. I will continue to send you support and strength.

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    1. Hi Nicole! I’m still trying to figure out how to find your blog on here — I used to be the tech guru but lately menus in random programs and websites seem to have passed my aptitude by. I know the damned function’s there! But if you have a link I’d appreciate it.

      “Emotionally vacant” is an excellent way of putting it. I agree wholeheartedly, as well, with your conclusions. I remember reading something once that really changed how I see life and interact with Ariana, about how your child doesn’t remember going to the beach with their pale, fat, etc. father, they just remember going to the beach with dad. Was a total epiphany to me when I realized how true that was. If I have to die from this at least I can try to have as many of those moments with her as possible and hopefully a few will stick, whether it’s coming home as a surprise one day to walk her to school, playing in the pool with her or kidnapping her for a donut run, whatever. It’s helped me shed both my self-consciousness and my selfishness.

      Was a pleasure to meet you and I look forward to future chats. You’ll be in my thoughts as well.

      -R

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      1. Hi Rich,

        If you send me your email address I can add you to the blog. My blog is on a site called caringbridge. Once I have your email address then I will send you an invite 🙂 My email is nlalonde01@gmail.com if you want to email me also or my phone number is 734-846-0635. Talk to you soon

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  2. Hi, I have been reading EVERY blog you have posted. So that either makes me a really bizarre stalker or you’re just that good of a writer. As weird as it may be to hear from a stranger, I’m really pulling for you and your family. You are a fighter.

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    1. Hi Rachael, and thank you for your comments — not much I know to say in return except how humbled that makes me feel. Sincerely, thanks.

      It actually doesn’t feel weird to hear things like this from a stranger, or supportive messages, etc. In fact that seems to be the real purpose of the various cancer communities on Twitter, in the end. A little more interactive but it still boils down to virtual hugs to strangers and a voice (and shoulder to cry on, if needed) in the dark. But man especially when going through something like this even just having someone you don’t know cheering for you really can help.

      Meant to ask, what’s your connection to myeloma? Feel free not to answer that if it’s too personal.

      My best,

      -R

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      1. My only connection to Myeloma is, well….you. And technically we are not strangers. I met you once through DeAnna Hemmings – at least 8 years ago during lunch. She’s my co-worker and she shared your blog with me. I hope you don’t mind. I never felt quite right commenting on your blogs, but after reading them, I literally wanted to say hello to you after you had shared so much of your life. So, hello again!

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