Sorry, as usual, for not updating more. The holidays were terrible and caused so much stress (family stuff) that it felt like all I could do just to survive, much less dwell on everything else. I think I mentioned it in the last entry, perhaps not, but my mental health effectively waxes and wanes with whether I can keep the emotional walls up and not really think about the horror of this diagnosis. When other things damage the wall, it all comes flooding back.
Nothing much is new, other than a better yet sadder understanding of those around me. I wrote a letter to a parent that I never sent to clarify my thoughts, and realized it would suffice as an entry here for now. Life is OK, or as OK as it can get when you just step around the elephant in the living room and try not to acknowledge it’s existence. Anyways, a portion of that letter …
I have a rare and terminal form of cancer. That isn’t grand-standing, “pulling the cancer card” or being melodramatic, it’s fact. While treatable and thankfully caught early, unless something changes at some point we will not be able to keep these numbers down and this disease is going to start attacking my organs, assuming the damage it is doing on an ongoing basis to my immune system doesn’t do me in first. As you may know, what generally kills you with cancer isn’t so much the disease itself but what it allows to be done to your system. I got to experience that firsthand when I was in the hospital for four days with pneumonia recently (one of the primary killers of people with cancer). In fact I think, of all of the time in the last few years of staring at hospital ceilings while trying to maintain my composure, that it really occurred to me that this is probably how it’s going to be at the end.
Every time I get a runny nose I have to think about that. I can’t really go to children events safely, although I try to for my daughter’s sake and my own, mentally. I feel like I sit on the sidelines too much as it is with her due to this nightmare. I actually risked my life just to go on that Disney Cruise for God’s sake – probably the worst idea, from a health stand-point, I’ve had to make. But I had to balance whether it was more important to take a risk and make at least some memories with my daughter versus not knowing if I’ll even be around a year from now. I’m not sure if you know what that kind of a decision is like, but I hope you never have to make it.
As best as I can describe it, when I was diagnosed the world went from spinning on its axis at 600 mph to 0. But just for me. I watched as everyone else got to continue their lives like nothing was wrong. Except mine had just ended. I suppose that’s what it’s like in prison, too. Staring out the window at a world that has stopped for just you while everyone else gets to go on living like nothing happened. With most things, as I’ll touch on in a moment, I’ve just given up and accepted my new role. Some stuff, mostly related to Ariana, I still refuse to even if I should.
The sad thing is, my decline towards the end could start in earnest tomorrow. Or the next day. Next week, next month … whenever. No warning, just the starting signs of the end. That’s the other “fun” thing about Myeloma and cancers in general, and why the local oncologist wanted a deeper response than the Mayo Clinic. As long as this is in my system I am in imminent danger.
Granted, you and I don’t stress about a lot (pretty sure I inherited that from you) but that’s one that keeps me up at night. Every night. And it probably always will. People talk about living with cancer a lot that have it and in the literature about it – what people who don’t have it rarely understand, however, is that it’s a mental and emotional battle, and honestly, most of us just give up. I’ve already met people who are dead now from this and other forms of cancer. Did you know that? I’ve met folks who have given up and just refused to deal with chemotherapy anymore. I keep going for my family, but I’m pretty sure if it wasn’t for Ariana I’d be in that boat. What I’ve learned in part by doing so, however, is after a while you become so numb from dealing with the horror that you just don’t have it in you to do so anymore, and you get a bit colder, a bit more aloof, a bit quieter. It doesn’t ever go away, trust me.
I vaguely remember you making a comment, I think to Amy one night when we were all together, about how when I was diagnosed was the only time you’ve ever seen my scared. That fear has never gone away. Not for a week, a day, a minute. In some ways it’s hardened me, although it’s made me so aloof in doing so that I have issues communicating with anyone I’m close to anymore. Imagine what that kind of fear is like, if you even can, that fear you saw a glimpse of. Imagine living with it as a constant companion. Look me in the eye sometime, I bet you see it.
Getting back to Ariana and this, I have had to enter into therapy and take fairly high-dose anti-depressants simply to get through the day mostly because of her and how the cancer is going to affect her, not me. I have had to learn that if I focus any longer term than the current day I actually begin to emotionally break down – the thought of orphaning my daughter, which is one of the most traumatic things a child can experience, starts flooding into my head. Every song on the radio seems to be about loss, every comment on a podcast I’m listening to applies, every thought that enters my head … it’s so upsetting to me that it actually physically shuts me down. There are nights it hits me out of the blue when I have the strength and energy left to put her to bed and read to her. She’s at the age where she’s started asking questions about why I am always going to doctors and why we were in Arizona, and I don’t even know what to tell her. Sorry, honey, daddy’s dying? She cries when she can’t find her blanket, how will her three-year-old mind work with that?
Most nights that I put her to bed I then go to my room and cry for a few minutes. Even Amy doesn’t know that one, she just thinks it’s when I go to the bathroom. Or she does and just respects me enough not to ask about it and risk upsetting me when I imagine she notices how glassy and red my eyes are.
You may or may not know this, but most children effectively wipe their minds of memories around age 5. Did you know that the top goal in my life is to make it past that age, simply so she remembers who her father is? Have any idea what it’s like waking up every day and that’s your entire purpose in life? To make sure you live long enough that your daughter remembers you? I talk to other parents and they are already worried about things like high school, the internet, the opposite sex, drugs and alcohol, accidents, driving. They say this shit to me and I can’t even relate. I just want to live long enough to spend more time with her. That’s it, the rest of life can just go away. It’s all I want.
If you want to know what that’s like for a few minutes, write her a letter from her dead father. Try to figure out what you’d say so you can get that minuscule an amount of peace that your 3 year old will someday know what her father was kind of like. I have a stack of those in a safe deposit box for her, did you know that? The tickets from our trip to Tiny Town are in one, and the stubs from our day at . Pictures, and ’ trinkets and things. Pages of letters with who my favorite bands and their songs were, stories from when I was a child, life lessons, but mostly just how much I loved her. Because chances are there will be nobody to really tell her any of that, at least in the way I wanted to share it.
So like I said, someday I am going to wake up to find that the Myeloma has begun my end. Again, that’s just fact. I live with that every single day. It’s why I have to take Xanax most nights simply to sleep and stay asleep, because I’ve found if I don’t that when I wake regularly at 3 am to the thought of “I have cancer” because the drugs I take to battle it make me sweat like someone poured a bucket of water on me in my sleep, I have a prayer of getting back to bed and at least getting a little rest.
I also live with the fact that, from everything I read, the end via Myeloma is extremely painful and unpleasant. The funny thing is, of all the horror involved with this that’s the part that worries me the least. I guess I just haven’t thought about it enough, but I’m sure at some point that will start grating on me too.
Now about those treatments, I take chemotherapy drugs, as you know, 21 out of every 28 days, and several ancillary drugs to keep me relatively safe while doing so. Even at the lower doses I now take, the steroid keeps me from sleeping well (and I think causes that sweating issue) and causes irritability issues that force me to restrain myself constantly when dealing with everyone from Ariana to random strangers. The is even worse. I am tired from the minute I wake up until the minute I go to sleep. I have found that unless I drink a good 32 ounces of coffee a day (which is why I now bring a French Press to work every day as you’ve seen, since that’s over $20 a day at Starbucks otherwise) I cannot make it until 5 pm. As it is, even with the caffeine by the time I get home I am rarely able to do more than sit on the couch even though I only have an hour or so with Ariana a day before we have dinner and she goes to bed. I try to come up with games for us to play where I can lay down, and a lot of nights I’m so tired that even though my favorite part of the day is getting her ready for bed and reading to her and telling her stories like I sort of remember you doing for me, I just don’t have the energy.
Every month I have a 30 minute phone call with both my pharmacist and Celgene themselves to get my next prescription. I get to talk to a stranger about how yes, I know if I have unprotected sex I’ll give birth to a child with birth defects (Thalidomide babies, since is a Thalidomide/ extracted drug). Yes I know if my daughter manages to get a spec of in her mouth it could kill her or permanently disable her. Etc. etc. It’s a fun phone call. Oh, the chemo also causes a side effect (exacerbated, apparently, by the stem cell transplant) affectionately called chemo brain. I used to be considered sharp, had a great vocabulary, etc. Now I stay silent a lot more because words that used to come easily to me are just gone. Memories are blanked, and I just stare emptily at people who bring up things we’ve done together that I for the life of me can’t even picture much less remember. My internal calendar is totally warped to the point I have to put reminders in my phone just to remember basic stupid things. It’s embarrassing at best and thoroughly depressing at worst. I always thought my brain was about all I had going for me in life, and now that’s crumbling apart.
Once a month, I have to go all the way downtown to get an IV of ( Acid, I believe) because one of the fun side effects of Myeloma is the damage it does to bones. The nurses regularly have to poke me multiple times and comment how beat up my veins are, and at some point (or perhaps when they change my chemotherapy to an infusion-based instead of oral regimen) I’ll have to have a port put in. I think mom had one of those for a while with her heart troubles. Imagine spending the rest of your life with a plastic hole in your chest, though, just to stay alive a few more days. Anyways, the infusion is fine. That is, until about 24 hours later when the pain and flu-like symptoms start, and then the next 48-72 hours are a nightmare. I don’t think its’ pain on the level you’re dealing with with the sciatica (sp?), as nerve pain is about as bad as it gets. But there’s no escaping it. Your actual bones hurt, and for some reason so do most of your muscles, which tighten up so bad it’s difficult to walk or even stand up.
Did I forget the best part about that infusion? apparently has a 5% chance of causing osteonecrosis of the jaw in people who take it. You and I both have a pretty solid background in statistics – how many treatments do I need to take before I’m at such a high risk it’s almost a certainty? Do the math. Don’t share it with me, I already know. Imagine that dental appointment though, when your dentist tells you that your jaw has begun irreversibly rotting and they’ll have to start a lifetime of cutting away chunks of it. And people wonder why horror films don’t really bother me anymore.
One more fun and recent addition is they noticed when I was in the hospital for pneumonia late last year that I don’t get enough oxygen at night anymore. After completing a sleep study with Parker Adventist Hospital and going over the results with a doctor, I am now going to have to start sleeping with a CPAP device. That’s a machine with a facemask on it to keep me from dying in my sleep, apparently. The hits just keep coming, as they say.
I won’t even get into the less polite side-effects like the constant stomach problems, etc. But believe me the list continues. There is one last fun one, which is not only is my system effectively incapable of losing weight, I gain it at the drop of a hat due to the steroid and the anti-depressant. I was in the best shape of my life when I was first diagnosed, if you recall. Now I have to hang my head and shop in the XXL racks and deal with the embarrassment of family pictures and tight clothes.
So what’s my life like now? Most weekends I spend sleeping late and napping. That’s the only quality time I’m able to get with my daughter but I rarely have the strength and energy to do that. I spend most of that time, when I’m awake, trying to pretend to be normal and thankful she doesn’t notice yet, and trying to cope with the fact that at some point she won’t want to (or be able to, because I’m gone) spend time with me anymore and I’ll have permanently lost that due to this disease as well. In other words even the time I have now I can’t spend the way I want. I can’t take her the aquarium because I can’t be in shoulder-to-shoulder crowds of people due to my immune system, nor do I have the energy to deal with it anymore most days. We eat at slightly odd hours to avoid crowds in restaurants. Hell I’m afraid to kiss my daughter half the time because like most kids her age she always has some sort of respiratory thing going on. I have to wash my hands like someone who has OCD and carry a bottle of hand-sanitizer everywhere I go. I don’t even drive my family around most of the time – I’m so tired I’m afraid I’ll get us in an accident.
I say this so you understand that the word “fatigue” rarely sends the message of what it actually is like to live it. Fatigue always sounds a little tiring, not like something that is actively ruining any enjoyment you have in life.
My own personal life? I don’t have one anymore. One of the weird things about cancer that a lot of people with it notice is that when you are diagnosed, you stop being who you were. I am no longer who I was two years ago … I’m now a cancer patient, and that’s all I’ll ever be. Maybe that’s like being an alcoholic or drug abuser? All I know is I don’t see the world the same anymore. Honestly, if it wasn’t for Ariana I wouldn’t even be here now – most of the reason I started therapy was that I was suicidal when I found out about all of this and things began progressing. I don’t want to be this, period. It’s not fun, I don’t enjoy life anymore at all outside of my daughter, I have trouble dealing with the anxiety (to put it mildly), I have trouble with the lack of support I feel from most of those around me, and what little quality time I can muster with my daughter is always tainted with the fact that at some point this is going to destroy her just as much as if daddy took the shotgun down to the basement bathroom.
Try living with that thought for a day.
I have no more real goals. I can’t dive anymore, safely, even in a swimming pool. I doubt I ever will again, and after a year and a half living this wretched existence I have trouble even remembering what it’s like. I can’t teach it, which not only did I love but I took a lot of pride in. By now I would have been a full-blown scuba instructor, and would have been tapped by the shop to actually be a trip leader to exotic destinations. That’s all gone now. Hell I don’t even like leaving the house anymore because I don’t want to be that far from a bathroom. My bucket list of going to Thailand, Indonesia, Egypt, ? It’s like it never even existed anymore, like it was some former life. The thought terrifies me now.
My friends? What few I had are mostly gone. The scuba shop folks have all drifted away except for two that I have lunch with maybe once a month. Amy and I are very good friends with a couple we met on a dive trip that we have dinner with once a month when I don’t have to cancel because of my health. I see R. for lunch once a month or so, and my buddy L. at Wells Fargo that I met in my assistant instructor class. That’s about it – most of our friends that we see are Amy’s friends, who have honestly been a hell of a lot more supportive than my own. Occasionally I get a text or something from someone, but for the most part they’ve all passed me by. That’s pretty common too with cancer, and although it’s hard not to I don’t hold it against them. It’s tough to deal with and you definitely find out who your friends are. L. and that couple friend visited us in Arizona, did you know that? L. twice actually. The rest? A few emails prompted by an email Amy asked the owner of our dive shop to send to all the employees and silence ever since. My phone rings so little anymore I rarely leave the ringer on.
My life? I struggle to get up, go to work every day, yawn my way through the afternoon most days and come home after 5. I try to bury all the energy deficiency problems enough to have fun with my daughter and stay awake through dinner, do her bath and get her ready for bed and read her a book. I try to talk to my wife most nights, or help with the dishes, but by then I’m usually so tired it’s just easier to go into my home office and kick back in my chair. I say goodnight to Amy and then stay up another hour or so, because it’s the only real guilt-free time I get during the day (i.e., my resting is not taking away from time with Amy or Ariana) and then after taking all of my pills go to bed and do it the next day. I have nothing to look forward to in a real sense anymore – I just “do,” basically for those around me. The bills have to be paid. I have a mortgage. Ariana needs clothes. Etc.