Those are not my words. The title is an actual quote from more than one friend to Donna upon her diagnoses of metastatic breast cancer. Donna, who is better in polite company than I am, didn’t get banned from wherever she because of shouted expletives after that. Most of you know my reflexive go-to word in most cases I find challenging. (Ok fine, it’s my go-to in pretty much all situations, at various levels of high volume.) Her other friends commented on the blog post. They, too, are better polite company than I am. They told her they love her, were proud to be her friend, and all kinds of the supportive things friends usually say and believe and live.
I am not that guy. Here is what I wrote:
I’m sorry, friends are not allowed to tell you that everyone is going to die. That shows true lack of understanding of what it’s like knowing death is closer to you than to most. Ominous. It also means they will never understand why every time things take a downturn, you wonder, “well, is this the end?” True friends listen and are positive and NEVER try to rationalize the worst part of our disease…. Love, your Stage IV Metastatic friend. (Here’s something positive for you: People with my original diagnosis have an average lifespan of 18 months. I’m coming up on 6 years. THAT is hopeful and helpful.
Karma? I don’t know, but within hours, I was the one wondering, “well, is this the end?” My breathing had become more labored since I came back from LA on Weds. I was pretty droopy on Saturday, and things went from bad to worse (I did, anyway)
About 3:30 in the morning Sunday, I woke up because I was freezing. Shivering so violently even Lucy wouldn’t stay tight (that’s a LOT if you don’t know Lucy). I’m pretty foggy about those few hours (and more than a few hours after this), but I don’t remember coughing much. I do remember having a tough time getting in oxygen, which caused increasing panic, which made the breathing harder. I bumped my O2 concentrator up to 2.5. This was the first time I wondered, “well, is this the end?” Still, I was too cold to do anything that would have required me to get out of bed. Until about 5 or 6. I texted Patrick that I was going to the hospital. I wasn’t sure how I was going to do that without getting out of my own bed, but Patrick is a problem solver. He was over in about negative one minute and on the phone with 911 soon after. Another hospital ride with the Park City FD. They were super nice and cute (of course), but they weren’t my usual team, with Ski Patrol Chris. Getting to the ambulance was like walking along the ridge to Uhuru Peak at 19,000 whatever feet on Mount Kilimanjaro, except I was absolutely getting more oxygen in Africa. When we finally got to the ambulance, the step up was about 5 feet off the ground. I stopped short and asked the EMT, “Is that me????” He said he could put me in the gurney and roll me in, which did NOT appeal to the stubborn Ironman side of me that I just can’t exorcise. So I stepped in on my own (it was probably more like 2 feet) and paid for it with a few minutes of coughing and gasping for air.
We went straight to Salt Lake this time, knowing that Park City Hospital wouldn’t let me stay there. Huntsman didn’t have a bed, so I spent a few hours in the Emergency Department with my 104 degree fever and muscles exhausted from contracting hard for hours.. X ray, CT scan, blood draw after blood draw after blood draw to see if I have some weird infection.. I’m pretty sure I was following directions, but many of them didn’t make sense. (YOU try not to cough in the middle of a coughing attack.) I just nodded and followed their leads mostly and tried not to stand up.
I finally was transferred by Nestor wheeling the wheelchair through the bowels of the U and Huntsman and into my room, where I still am, 3 days later. It’s been a tv drama in here since I arrived. Within hours, I went into such a bad coughing, wheezing, low oxygen level, gasping for air panic that the rapid response team filled my room. That’s about 9 people from different departments watching you and trying to figure out what the f? This was the second time I wondered if this could be my time. With an audience in my own little theatre, but no popcorn. This might be funny if I didn’t remember how terrified I was at being unable to make myself feel better.. That group had a lot of brain power. Four kinds of antibiotics, A nebulizer treatment (or 5), Mucinex, Symbicort, cough medicine, a steroid, and the miracle drug Atavan worked together too get my feet back on land. That Atavan is amazing. Someh0w it relaxes my lungs so I can breathe out of more than the top half. I actually had a halfway decent afternoon, what i remember of it.
The initial verdict was yes, a bad case of pneumonia with sepsis and maybe a c0uple of other infections. I’m on an alphabet of antibiotics, plus a slew of other things. Like the ice mat. Nothing was making my 104 degree fever go down. So my nurse. McKenzie found, tada!, the ice cooled mat that she made me lie on. (It actually wasn’t as bad as I’d dreaded, plus it worked.) (But I never need to do that again.) Despite all that, I spiked another 103/4 fever yesterday. That meant more blood pulled so they could try to identify the infection that is laughing in the face of the tsunami of antibiotics coursing through my body. My temp has held close to normal now for a day.
Days are pretty good. Both nights here br0ught coughing, wheezing, and a troubling inability to breathe that required me to sleep in a chair one night, and just to get vertical and buzz Maisie, my overnight nurse, to bring me more more drugs this morning at 5. I don’t think I’ll get out of here today.
I think about death all the time. But not in a creepy horror movie way. I know it’s closer to me than it is to most people (although yes, Mom. someone could be hit by a bus and die first. But truly, who was the last person you know who was hit by a bus to death?) I am accepting of death. but this is the first time I have thought of it as a real thing for myself (except that time when we were sledding down Redgate Drive and I was headed straight under a car, but Timmy Tilburg pulled my runner at the last minute and saved me. I think he was disappointed to have averted carnage.) Anyway, it never crossed my mind that my own death could be a.. well, a violent one as would have happened this week. I figured I would do like my friend, Stuart Scott, and train with a trainer, and write most of a book, and produce my own memorial service (where you took my Sister Hazel idea), and fade away, but NOT fade away. I’m still not afraid of death, but this week presented a whole different dimension that I hadn’t considered. I threw something out into the universe, and I’m not sure what the return message was, besides scary. Maybe it’s that most of us (I’ll receive the message for the team) don’t choose how we die, and it could be completely different than the pretty death you hope for. I know there’s such a thing. I saw the ER episode where Mark died. I’ll mull it over for a while. I’ll have time, because I am getting better (right now. At 2:07 MST).
So, Donna, don’t let people rationalize your eventual death with a statement that “we all die.” It’s a cop out. It’s chirpy and breezy and easy. Sure it’s true, but as a resp0nse to an announcement of metastatic cancer, it’s a bit superficial, a bit callous. It does continue the conversation, so it’s not all bad. And all of this wafting of death stirred up from last week and this week is a great reminder that all of us, but especially you and me and Kathi and Michael and Shannon and all the other Stage IV Mets that we know need to continue to take advantage of our good days to do great things. And fun things. And new things. And things with people you love. Because one thing is as sure as sure can be: You probably won’t have as much time as you want. Not this time, Death. #Defy