When I was a child I had a little stuffed bear. I couldn’t tell you what he originally looked like even though I still have him — almost 47 years of wear and tear from myself and of course now my daughter, on top of being mauled by various dogs through the years, have taken their toll. In fact he’s more triage than bear at this point. A sad faded yellow with a white belly, a hard surface where presumably at some point the nose was attached, and covered with my father’s best attempts at sewing him back together after one of the labs would get a hold of him. Stuffing leaks from unfixed holes in his belly sometimes and both ears could use some reconstruction work.
I’ve thought a lot about that bear recently. This just hasn’t been my year, especially physically — three surgeries have left me looking like him in my mind (with a slightly worse tan); scars across my stomach, translucent skin, no eyebrows or hair, etc. As I write this, in fact, today marks just over a week since I was last in the ICU at the hospital and the longest I’ve been out of PSL in the last three months.
I realized something (well a lot of somethings, but one big one) during all of that time.
I have cancer.
I hope that makes sense in a non-patronizing way — obviously I know I’ve had cancer for over 4 1/2 years now. But up until this year it felt manageable, almost surreal … something you can picture, form words around, but not really understand. As Dr. Mikhael at the Mayo Clinic pointed out to me years ago I wouldn’t even know I had a terminal disease except people kept telling me I did (and making me take drugs for it).
But this year? This year I’ve watched, helplessly, as my health has deteriorated to the point where on a few of these visits I (and others) were convinced I wasn’t going to be leaving the hospital again. Worst of all, at least to me, was having so much time to really think about that. At the risk of making too broad an assumption I think most people would prefer to die suddenly, painlessly, their affairs in order. But there’s a special Hell in just waiting and kinda wishing to die that defies me to really explain it satisfactorily, in crying yourself to sleep in an uncomfortable hospital bed thinking it wouldn’t be so bad if you just didn’t wake up tomorrow. Even though the consequences on those around you that you care the most about would be so brutal — that tipping point, emotionally, where you just stop caring and the pain of it all trumps the logical, the kind, the caring. Where you just don’t want to feel anymore, anything.
It’s that inflection point that really scares me about death when I think about it — when I can say to myself that I’m sorry, Ariana, but daddy just couldn’t take it any more.
I haven’t updated for a while, I should probably tell this tale.
VTD-PACE round four fucked me up pretty good. It did its work, in terms of my numbers (which typically I don’t have handy as I type this), but the price was too high — I’ve been a medical dumpster fire since the end of the treatment and the khyphoplasty for my back fracture.
Things started like the post-PACE hospitalization week always did each cycle, with this overwhelming mental, physical and emotional sense that something was seriously wrong. Each cycle that’s gotten worse but round 4’s was impressive — I was a basket case for a few days. I can’t even put to words, were I even willing to share the thoughts and imagery, of what was going through my head. I would hazard a guess that the massive amounts of steroids in this treatment causes this reaction, but regardless it’s the death of all hope, this black pit that you can’t get yourself out of except by waiting it out.
Then the cold hit. Having just been hospitalized for pneumonia I wasn’t too worried as I felt decent-ish and had just had an IViG infusion, but then the sputum I was coughing up started being mostly blood (sorry for the gross image) and other symptoms started appearing (body pains, shortness of and difficulty catching my breath, etc.). Back to the ER and into the hospital again. Turns out not only did I still have (or had developed a new) pneumonia, but I had mold in my lungs. Aspergillis, if you were curious, although I prefer to call it “Bob.” Aspergillis sounds like somewhere you have dinner in the Hamptons after beating the slaves or whatever people who live in the Hamptons do for fun.
And that, btw, is the end of the MMJ treatments for now. Which figures — I take something like 17 medications and the only one that truly helped is now lost to me. Yeah that warning about how immune-compromised people should probably avoid certain things? Not bullshit apparently.
The mold thing led to a deeper problem — one of the main concerns with PACE is the damage it can do to your kidneys and other organs. Same as Myeloma, really. For the kidneys your doctors in the hospital look at the “creatin” number every day from the midnight blood tests (that’s when they do them at PSL anyways) as a proxy for that damage being done. On top of being already irritated, some of the tests (CT scan with IV contrast) can damage the kidneys as well, and sure enough in trying to nail down what the mold was and what it was doing my creatin shot through the roof. All of a sudden I’m meeting kidney specialists who are assuring me we “probably” wouldn’t have to do dialysis and any damage “probably” wouldn’t be permanent while debating if it’s even safe for me to have a Tylenol.
How do you fix things before it gets permanent? Tons of fluids. Unfortunately when you have liquid in your lungs already from pneumonia the last thing you want to do is flood your lungs. That diuretic treatment I’ve talked about before that makes you pee a lot, Lasix? Bad for the kidneys too.
Were that all I’m sure things would have gone smoother, but then out of nowhere I start experiencing excruciating pain in my chest that popped up one random day in the hospital and got so bad I needed painkillers to breathe.
One thing to note here, btw — if you are ever in the hospital and even remotely suggest to a nurse that you have chest pain, prepare for a lot of tests, a lot of monitoring and to meet all kinds of new and seemingly unamused doctors. Immediately. In my case it was diagnosed as periocarditis, an irritation of the sac surrounding the heart. The CBCI doc rounding when this was discovered thought it was probably brought on by the chemotherapy, but either way they began treating it (I forget with what — was in there for two weeks and lost track of time) and within a day or so I was feeling better.
To deal with the mold, the infectious disease doctors (more specialists) wanted a certain level of anti-fungal medication in my system. For some reason these drugs in pill form are super expensive so before I was discharged we had to make sure not only that my creatin (read: kidney irritation) levels were plateaued or dropping, but that I had the anti-fungals doing the work AND the pharmacies had more anti-fungals for me AND the other drugs I was taking wouldn’t interfere. Apparently you’re on these for quite a while too. So I get prescriptions called in and get discharged after two weeks at PSL.
Keep in mind the whole time I’m missing my daughter and freaked out about what she’s thinking — that’s a long time to be away from a 5-year-old, much less in a hospital she can’t even visit (14-year-old age restriction). We FaceTimed every night, of course, but even sitting up and taking my oxygen out for a bit must still have been scary. I’m still missing all of my hair, including my eyebrows, so me sitting up in a hospital bed in a hospital gown isn’t exactly the most comforting image.
On the bright side at least I knew, relatively, that I was safe. So days pass, I felt a lot better, say 80-90%, and a’ discharging we go.
The next day we go to pick up my anti-fungals and … the insurance company refused to cover them. For several thousand dollars of medicine too, otherwise I would have just eaten the cost. Not thrilled since this was supposed to have been taken care of before I was even discharged, I let the doctors know and we planned to deal with it at a follow-up appointment a few days later.
I’m trying to get the timeline in my head right at this point but basically I got discharged on Friday the 29th of September here with a Monday follow-up appointment at CBCI. That weekend I felt fine until Sunday, when I started feeling exhausted and ended up going to bed when we put our daughter to bed around 7 pm. Had the worst nightmares of my life that night as my health deteriorated throughout the night. Thankfully my father was able to give me a ride to CBCI but my wife had me take my in-hospital bag and laptop, because sure enough they re-admitted me that day. Some of the CBCI personnel I know noted at later visits how bad I looked that day.
I actually thought that was kind of it again, really. I think we in general have this perception, perhaps due to the gravity of it all, that you know when the end’s come. In reality what I’ve learned and come to expect is just a slide into oblivion — the system overloads, the failures mount up and at some point it’s just too much. Needless to say I was not in a good head-space at this point.
Spent another week in the hospital, more tests, and go home — pneumonia again plus more of the periocarditis-related issues. A night later and I can’t breathe deeply without severe, stabbing pain and even with home oxygen canisters I had to take a few minutes after climbing stairs to catch my breath. Freaked out but having oxygen and an appointment at CBCI that coming week I tried to grit through it but I was terrified — not being able to breathe is pretty awful, as are the thoughts that go through your head. Is this my life now? What do I do if one of these O2 cans fails, just die?
I emailed the oncology team the night before my appointment and told them what was going on and was admitted to the ICU the next day. Queue tons more tests including a bunch of echoes which showed that on top of some liquid in my lungs I now had a large amount of liquid in the pericardium sac around my heart, a condition called pericardial infusion. Since there’s a limited amount of space there the heart can’t function normally which was apparently causing the pain and the inability to breathe properly, as well as my randomly going into atrial fibrillation (I think that’s how you say it). So from 50-70 beats per minute my heart rate would suddenly jump up into the 150’s.
Oddly I didn’t notice when this would happen except that all fucking hell would break loose on the monitors attached to me and a nurse would come running. It would self correct in about 5-10 minutes, usually before they could even get an EKG set up.
After consulting with CBCI and the specialists at PSL I ended up having surgery to fix the problem, which had ballooned into a full pericardial effusion, where the heart has so much fluid pressuring it that it can’t work correctly, and just short of a tamponade, when it stops being able to work). The surgery was performed by this awesome guy named Dr. Parker with a ton of experience doing them and they took roughly a quart of fluid from the pericardium. I now have a new 5″ scar between my belly button and my chest plus a hole where a grenade-shaped drain attached to the surgical site was attached for several days. I’m on a few different antibiotics, antifungals and antivirals based on what they found when they analyzed the crap they drained out of me, but I’m alive.
Mentally and emotionally I’m really struggling. I relatively waltzed into 2017 by comparison, or as waltzy as you can get always knowing in the back of your head that you have a terminal disease. But after having 6″ of my colon removed, pneumonia twice, four rounds of salvage chemotherapy, mold in my lungs and now a quart of fluid drained from around my heart I just feel pistol-whipped. I’ve lost a good 60+ pounds and look almost gaunt, a first for me, and not a good look combined with the lack of hair and eyebrows. I get the chills out of nowhere, presumably from the weight loss, and energy drops I can’t explain. I definitely do not feel right.
I guess I just feel like I’m cancer now, like this is some big waiting game. Just when I’ve thought I had a grasp on my reality I’m shown this new level of horror and forced to face it and it keeps happening. I’m tired. God two days after I got out of the hospital the last time I had this awful Sunday where I could not stop either sweating or getting the chills and my skin was tingling and I was thanking whatever deity I could think of that I did not have a pistol in the house. You just hit a limit. But for some reason I just keep taking it, taking the pain, the heartbreak, the apologies to my daughter for not being able to be a more active or fun daddy sometimes.
Her hugs are about the only thing that helps, even though they break my heart.
I’m quieter now. I’ve already experienced people not recognizing me physically thanks to this year but it feels different when I talk to people. Awkward, a little. I mean it’s always a lil’ awkward when you have cancer to talk to friends, we all know that, but this is different. Like I’m an observer, almost, a third-party participant that doesn’t quite fit in. Hard to explain.
On the bright side, if you can believe there is one, we got a puppy. I really didn’t want a dog and my wife and daughter are allergic, but they found some hypo-allergenic cute five-month-old silky / Havanese mix. Not even sure I was leaving the hospital ever again I said yes, even though I prefer cats, but it’s worked out. Beatrix is a bundle of love and a joy to just pet, and I think it’s what our family needed right now. Besides pets pick owners, not the other way around.
And it’s not like I wasn’t already washing my hands like I had OCD with a kindergartner in the house anyways, right?
Lastly RIP to @CultPerfectMoms, someone I’ve followed on Twitter for quite a while now. Her last blog post can be found here but she only lasted a few more weeks. In a small way her struggle, and final acceptance, helped me when I was in the hospital to keep just taking a step forward even not knowing (or wanting to know) what was coming tomorrow to see my daughter again. Thoughts and prayers to her family.