Sitting here in the infusion room waiting for the results of my CBC tests to get my Velcade shot. I’m doing OK, but there’s a woman who apparently is going south fast right next to me … They just put her on oxygen and are going to admit her to the hospital. Before I sat down I watched a little boy curled up in a chair outside the blood draw room while waiting for his mother to get her blood drawn.
After getting a lil’ frustrated that a nurse kept intercepting my emails to Dr. M. at the Mayo Clinic I called this morning and she called me back at lunch. Good news is all she wants to see right now are the CBC numbers with a monthly note from the local oncologist as to my full bloodwork results after my treatment on the 20th.
Bad news? She’s leaving the Mayo Clinic. Apparently her husband’s job isn’t working out and with a toddler her only choices are stay there and fly home to Canada on weekends or move back, and I get that completely — nobody wants to be a weekend parent. She’s going to start working on getting me set up to visit the Arizona stem cell transplant folks in October and is working on matching her patients up with colleagues in Rochester that she feels are a good fit. For me she’s going to suggest Dr. K., her mentor, someone she calls a genius and who is apparently very prolific with research on multiple myeloma.
I guess given the fact that we have little contact I shouldn’t be saddened by this, but it just feels like a punch to the stomach right now. Never met a doctor who inspired such confidence or that was as friendly, personable and was able to emphasize as much with my plight. Hell I’ve never had a doctor repeatedly ask me to use their first name.
Well so far (knock on wood) my luck seems to be holding out. Outside of some sweating at night I seem to be doing OK on the drugs this week.
Mentally I’ve had my challenging moments this week. I’m still not adjusting to this “lifestyle” or whatever the hell you want to call it. I think Facebook is to blame — I used to enjoy using the site to stay in touch with friends and acquaintances, but now it’s become a jail cell where I’m staring out through the bars at everyone free walking by. The scuba-related stuff is the worst but it’s all bad, really. I feel like the world just stopped spinning for me and mine this summer and it’s still doing 600 mph for everyone else.
Guess I should probably get used to that.
Did a horrible job of hiding what’s going on from the woman who cuts my hair today. Usually we have fun chatting but I couldn’t summon anything entertaining, and she knew something was up. I apologized for not getting into it. I feel like my emotional control is still lackluster at best and I’d rather not get into this strapped into a chair in a well-lit public place, much less ruin yet another person’s day with my story.
I need to touch base with my doctors and make sure everything is being done properly — I guess that’s a control-freak reaction, but I kind of have to be with this. I could swear I was told for at least the first month they were going to do more in-depth blood tests to track things but I feel like they are only doing the CBC tests to make sure administering the drugs is OK on chemotherapy days. It probably doesn’t matter but I’d like to work out all of the little bugs and communication flow problems now.
Amy changed her Facebook profile picture to a multiple myeloma ribbon picture, which has let the cat out of the bag I would imagine. I keep balking at linking this site on there — not sure if it’s because my writing here feels too personal or I just don’t feel ready to “out” myself or something. Dunno, never really hesitated to share stuff like this before but that leap feels like it’s right off a cliff and I don’t want to go there for whatever reason.
A lot to get through and I’ve been bad about writing here this week, so apologies in advance for the long post.
Starting Tuesday night I got hit with an enormous amount of abdominal pain, about a 6/10 on the scale. This lasted until about Thursday night and involved calls to my GI doctor, Dr. F, me starting Prilosec OTC, very little sleep, and me mentally spiraling downward into a place where I was actually Googling methods of committing suicide.
It feels weird to type that. This all feels weird. Four months ago I was a totally different person. Then someone told me I had a terminal disease, even though I felt fine. I had tests and was poked and prodded and sucked and cataloged and talked to and convinced that I have this thing, that it’s slowly but surely eating me away from the inside and eventually is probably going to kill me.
I’ve tried to maintain a positive attitude on things, usually via my typical black sense of humor. It’s been almost impossible — I’m still in a horrified, “this can’t be happening” state of mind. I was and still am grieving for myself, for the life I feel like I have lost. I’m constantly wracked with guilt over the impact of this now and in the future for my family and friends, etc. I started seeing a therapist knowing that I am not equipped to deal with trauma on this level, though, and although I couldn’t (and still can’t) summon hope and a “kick ass” demeanor quite yet I got as proactive as I could with my treatment. I even got a bank safe deposit box and had a will made, put it all in there, and started writing letters to my not even 2-year-old daughter so in case I die from this she can at least have something from me to know who her father was.
And because it’s my only shot, apparently, and still not feeling bad whatsoever physically from this, I start chemotherapy, and WHAM. Now I fucking feel like a cancer patient, or at least what I figure one feels like. I get this brutal temperature and have to immediately start antibiotics, followed by a holiday trip to the ER. I’m tormented constantly with thoughts that my body is rejecting the treatment, that my organs are failing, that I’ll have to switch drugs so one less method to battle this and that much less life I get.
The temperature goes away, I have a day of peace, and WHAM. The stomach thing.
Chronic pain, and the thoughts that accompany it, have a way of putting things in a frightening perspective that I could never have come close to understanding before experiencing it firsthand. Is my stomach, which has troubled me for years, finally falling apart in the face of the chemotherapy drugs? Why won’t the pain go away? Is there another cancer in there, the highlights the doctors wanted me to follow up on after chemo started but assured me was probably nothing?
Sitting on the couch, in dull agony, sleepless, far beyond any internal coping mechanisms and feeling a *click* in your head that says “fuck this, I am not spending the rest of my life dealing with this,” the tension in the house so thick you can taste it’s metallic taint in every sip of water (which you’re afraid to drink too much of because of the stomach pain, but have to drink a ton anyways because with the drugs you’re on your kidneys can easily fail if you don’t). Stressed because Ariana hasn’t slept all week and you feel like this is seeping into her, that she keeps hugging you and saying “daddy hurt” and it breaks your fucking heart because now my pain is fucking her up as well and the guilt is overwhelming. Realizing if this is what life is going to be like now that you have life insurance, and a will, and you can make everyone’s life easier right now.
Sitting on the couch, thinking these thoughts, wondering if there’s enough prescription painkillers and muscle relaxants in the house to do the trick, wondering if you have the courage to go downstairs, load up a rifle and pull the trigger. Wondering if you could get through Cabelas to pick up a cheap shotgun and a small box of shells, how you’d contain the mess to contain the trauma, etc.
That’s a place I’ve never been before, not in a real sense. I mean I think everyone ponders this stuff at some point, but to really start building a decision tree, to see the squares mentally and the lines and arrows between them, to tickle the edge of a plan …
My therapist and I met Friday morning, and after I related this all to her she asked me what pulled me back from the edge of the abyss I was standing on. I told her it was a combination of things, most of which I read that night on my phone in tears with my daughter and wife oblivious in the kitchen next to me. Things like:
Or maybe by not killing yourself, you save a number of people you know the sort of unbelievable heartache that is 100 times worse than whatever you are feeling now? Is that alone enough reason? You might be thinking that those near to you will come to terms with what you are about to do; that your pain is much worse than theirs will be. But the legacy you leave those people is not only the grief of your death, but guilt for the rest of their lives that they couldn’t help you feel better. They will feel responsible. Or else hurt, confused, angry or remorseful.
Make no mistake. Suicide will have a devastating effect on those around you, and the effects will stay with them the rest of their lives.
Oddly enough that is from a website devoted to how to kill yourself.
Anyways, I tucked the suicide prevention hotline number in my phone, thought through things, and decided that this is NOT MY FAULT. It’d be one thing if I had been out banging hookers on the side or shooting heroin and had contracted AIDS or something — but I didn’t do this. It was done to me, either by someone’s God or the shittiest roll of the dice I could get one day or who knows the fuck why else, and although I doubt I will be able to ever not feel guilty over it’s impact on those I love, I will not leave them a legacy that they might have failed me (even if that couldn’t be further from the truth).
Plus my mother would blame my wife and probably sue her. That’s a whole different Oprah, however.
Sorry if this is all TMI … this blog is the reality of me and my fight with this, and it’s not all bravery and courage and bravado and “fuck this disease.” I’m just not there, man. I try. A lot of people I talk to think I’m there, which means I project it if nothing else. But I’m not there. I’ve had thrust upon me that not only am I mortal (very much so, apparently) but I’m flawed, and weak at times. I barely recognize who I was four months ago before I found out about this, and when I do I just get angry because I was on such a good path on almost every level and I feel like this is my fucking reward. But even that image is fading, getting too distant in the rear view of my life now.
But maybe courage is not so much not being afraid as it is being scared to death and doing something anyways. Because I want to try to be there for my wife, and be a better husband. Because I want to have a relationship with my daughter. I want to live, you know. Not with cancer, obviously. But I want to live.
Anyways, just in case that was not all enough, Friday was a total shit show at RMCC for me. The day already started out badly with Amy and I getting into it that morning and then us both going to my therapist. Although that ended well it set an emotional tone for the day and eroded the walls a bit.
We had an hour to kill so we hit up my favorite coffee shop, where Amy learned thanks to an accidental Edward Snowden -esque barrista that I had been going there and getting the frozen bear drink Amy had asked me months ago to stop getting (due to chemical content of the syrup). I have actually cut those out for the most part but I consider it my mental health drink for the soul at times and have snuck in a few, yes. Needless to say she was pissed, and while I was able to fix it (I really had no idea she’d be angry, since she’s let us cheat on the anti-cancer diet rarely for a desert, etc.) when we got to RMCC we were primed for disaster.
Sure enough we got a temp nurse who had no idea what we needed to be doing, had zero personality, was rude and impersonal, couldn’t understand my orders and then got Amy in trouble by letting her go with me into the blood draw room (a no-no at the Sky Ridge location, apparently). At this point I took over with another nurse while Amy had a meltdown outside the door. By the time we got into the infusion room to wait for my blood test results (they test my CBC levels before administering the Velcade) we had the manager of the location sitting with us and apologizing profusely as Amy related our experience, then the head of all of their nurses, etc. It was insane, and kind of embarrassing, but Jesus — temp or not, if you are working with cancer patients then (a) have a clue what you’re doing, this stuff is dangerous to get wrong, and (b) have some fucking empathy.
I don’t want to badmouth RMCC here — they were amazing about it, and I get it. I know a ton of nurses and I know how the nurse-for-hire game works. Sometimes you strike gold, sometimes you get coal just like non-nursing temps. So I didn’t take it as an example of their quality or anything, I was just in shock — it’s a delicate thing, dealing with this, and dealing with such potent emotions and pharmaceuticals, and until someone told us I had no idea that was a temp who didn’t actually work there. You kind of want your care to be the one thing you DON’T have to worry about dealing with, you know? So not their fault, and the nurse who took over my care in the infusion room was awesome just like everyone at RMCC usually is.
Tough stuff, but there is a silver lining … two actually. One, Amy and I spent a lot of time talking the rest of the day and using the therapist visit as a launching point to fix some things. This is just as hard for her as it is for me, and it’s a learning process that we both have to go through. Understanding that is part of it, and hopefully it will bring us closer together. We talked more about “us” than we have in a long time, and that’s a good thing.
Secondly, so far so good on the feeling OK front. I have a feeling, given the side effects I was dealing with this week, that most of my problems were caused by the Zoledronic acid I have to get infused with once a month as well as the Levaquin I had to take due to the temperature spike (bad on your stomach, apparently). I feel OK today, outside of being a bit hyper and tense (probably due to the enormous amount of the Dexamethasone steroid I take on Fridays). No temperature, I slept well, and fatigue isn’t too too bad. If I’m right the even better news is I’ve had several nurses tell me usually the first Zoledronic acid dose is the worst, so hopefully we won’t be experiencing this again. I’m also sticking with the Prilosec for another week or so as well as something else for my tummy to keep it feeling good and to be proactive about things.
That’s about it for this week … and I think that’s enough, Jesus! Had one tough moment this morning — we came home from our daughter’s swimming class and Amy’s best friend had dropped off a huge box for me. It was a gift package put together by the founder of It Ain’t Chemo, Kevin Hoyt, with a blanket, several tshirts, a backpack, a hat, hand sanitizer, a wristband, pens, etc. and his personal contact information as well. It was hard reading the letter, having the reality of this all slap me in the face — reality does that often, lately. And it’s hard being the recipient of things like this — it’s hard for me, for whatever reason, to realize how much some people care, and Amy’s friend Julie and her family are truly beautiful people and I don’t know how to thank people for things like this, or for the anonymous friends who have coordinated to leave a gift basket for us every day on our doorstep.
I’ll have to check out this organization and make sure to thank and donate to them … I haven’t had any contact with others with cancer since this started, on a personal level, and maybe this is a start.
Anyways fingers crossed for a good week.
At work today .. felt better this morning. I feel slightly “urgh,” for lack of a better word, but I woke up feeling like I at least got some rest and I knew if I stayed home I wouldn’t be healing.
Talked to various people at Dr. F.’s office this morning who called to check in on me and everything is fine on their end. I’m supposed to stay on the antibiotic for the full 10 days as a precaution, and both nurses I talked to noted that my reaction this weekend happens in slightly less than 50% of people who take the Zoledronic (sp?) acid infusion. Apparently it’s usually just the first time, so fingers crossed.
In a better place mentally today although I feel like I’m having to juggle a lot of stuff and I wish I could throw a few of these balls to others, for a while.
The last 48 hours have been significantly less pleasant. Felt fine Saturday but woke up early Sunday morning with the chills, and then woke again slightly later with a solid temperature. The protocol for a temperature over 100 for me is to immediately start an antibiotic, which we chased with Tylenol. That got the temperature under control but I felt like ass the rest of the day.
We were supposed to go to a family BBQ on Sunday but I couldn’t make it and my wife, who had contacted Dr. F., wouldn’t leave me at home. Instead her parents brought the BBQ to us, just another example of how amazing her parents are. Warmed my heart to see Ariana get to play with her grandparents, who are amazing with her. Another example of how I feel guilty about this, though. I know that’s wrong, and that people are happy to accommodate, but I can’t help feeling it wouldn’t be necessary if I didn’t have this. Not sure how to shake that feeling.
Passed out in a comatose state last night at 7:30 pm and then alternated between the sweats and the chills for the rest of the night. We called Dr. F. again who told us to come down to the Rose ER to get checked out. He didn’t seem concerned but was surprised I was having such a severe reaction so we all figured it would be best to rule things out. Having spent the last week ruminating on the side effects of the drugs I’m now on (like, scary psychotic “whoa, that would suck” side effects like your jaw dying — which I didn’t even know was a possibility!), your mind tends to wander. Is this how it ends? Is that what the start of organ failure feels like? That’s a fun one.
Called a friend to babysit and we hit the ER, where after 5 hours and having a ton of blood taken we were released with a reassuring “there’s nothing wrong with you.” My temperature seems to be stabilized for now although I do have a slight chill, so fingers crossed for tonight. Better safe that sorry, and I guess they are used to this down there.
The overwhelming thought for me for the past day or so of feeling like this has been “ahh, THIS is what it feels like to be a cancer patient.” It’s been a really black period — I was fading in and out of lucidity this morning, plagued with visions of my own funeral, thoughts of how if this is what things are going to be like from now on I don’t want to live like this, images of Ariana asking “where’s daddy,” etc. Just dark, unpleasant, rapid-fire. As the images came back to me throughout the day it was hard to remain composed, especially while laying in the hospital. Having to tell so many people at the ER why I was there, how I just started chemotherapy the previous Friday … too much.
It’s funny, almost, how the protective walls cave in … I’m laying there in a hospital bed, desperately trying not to think, not to feel, to count the divots in the ceiling tile in desperate search for some OCD train of thought to lead me away from my real thoughts. I can feel it when the emotional levy breaks, when a tide led by a thought of Ariana fatherless or something else blasts through like it wasn’t there and completely engulfs me.
After they drew all of that blood at the ER they wheeled in an elderly woman to the slot next to me who had some sort of bronchitis thing going on. That sent me into a little bit of a panic, but we quietly asked a nurse if I could have a mask and when we told her why (suppressed immune system, hi) she put me in a private room. Granted after just one session my immune system isn’t as compromised as it will be getting, but still I have to be careful.
I have a bunch of friends who work or worked in the medical field who have always expressed the positive side of working there, the helping side. It’s hard, mostly experiencing hospitals when my daughter had surgeries or now with me having to visit them as a cancer patient, to see that — I just see the hardships, the horrific stories … and now I’m living my own, I’m “that” person I never wanted to be and that I felt overwhelming empathy for. It’s hard, especially in the grips of severe body pain, inability to control my temperature and worse fatigue than I’ve ever felt before, to not feel like the “see, it could always be worse” example.
Part of that is pity party, I know — I’m pretty aware of how much worse it can be. Forgive me a momentary lapse of humility, though.
When we got home, Amy took Ariana shopping briefly and I had some time to reflect. I decided to get the hell out of bed and just move, be, breathe. I think it helped, somewhat. We took a walk tonight with Ariana before her dinner and that helped too, just to get outside and pretend to be normal again, just a couple walking their baby in the stroller, daddy stopping for a moment to blow a dandelion in her face. I asked Amy if we could try to make more plans with people because I feel like I’m living in a bubble right now, detached from everything except emotional stimulus that seems to take great joy in overwhelming me during weak moments.
When we were driving home today from Rose I noticed a sign for some random church with one of those faith messages on it … something like “Feel his glory” or similar.
I wish I could feel it. I really do. I just don’t see any glory in this situation, I didn’t need a reminder this big to be a better father, husband and/or friend, and glory isn’t what keeps popping into my head as the end of this journey. I can spin this however I want, be as positive as I want (and I’m trying), but I’m not sure how to effectively spin the fact that unless the omnipresent (and so far infective) “they” cure this fucking thing I’m a walking dead man and we’re debating when, not if.
Try wearing those boots for a day.
So yesterday was the first day of chemotherapy. Man that just sounds so strange, so surreal, even typing it out. Went down with my wife and father, who wanted to come. It went fine for the most part — there was some confusion about my medications that freaked me out a bit, though. The way the Mayo Clinic does this treatment and the way the RMCC does it are just slightly different — mostly in how and when you are supposed to take the Dexamethasone. I had taken it Friday morning, as directed by Dr. F and the Mayo Clinic, but apparently the usual way the RMCC does it is to take it the day before (only a partial dose) and then the rest with the Velcade shot.
Got it cleared up that afternoon, however, so now I just await the results and next Friday’s session.
All things considered I’m feeling OK. Had some mild nausea and some joint/bone pain, which was to be expected, a little vertigo when getting up too quickly, and I can definitely detect a higher level of fatigue than usual. Considering how it could be, though, I guess I should be thankful. While sitting there in the infusion room (where they do everyone’s chemo), I was listening to the nurses talking about things like “96 hour infusions” which doesn’t sound like too much fun.
Then again what I’m doing isn’t fun either, even if it’s a much more mild regimen. I think my deal is more of a mental battle at this point … it’s hard to describe the feeling of just having done a chemotherapy session when I don’t feel the slightest bit cancer-ridden. I have a feeling I’d be approaching this differently, at least mentally, if I was as ill as some of the folks get with this stuff.
Today (Saturday) we took Ariana out to Cabelas to get out of the house and I got sunburned just driving there and back … forgot about the chemotherapy class mentioning I need to always be wearing sunscreen outside now. On the bright side I had a good friend I met on a diving trip hang out for several hours talking on the patio at home, though, so ended the day better than usual. He and I, as he put it, just instantly “clicked” with the kind of kinship you find sometimes on things like dive trips, and it was nice to just kick back with a beer (well me with water) and shoot the shit for a few hours.