Being back in the hospital has forced me to face some major realities of my past. Everywhere I turn, I’m reminded of the times that challenged me, the noises–of IV pumps and bed alarms–that drove me completely crazy, the tears that fell on similar hospital bed linens, the scents of the soaps I learned to hate—have all caused me to pause a moment, breathe, and try to remember that things aren’t happening again.
This is the longest I’ve gone since being in the hospital—eight months out of hospital beds—well at least overnight hospital stays (if you don’t count ER visits).
All of this familiarity of in the hospital on isolation and droplet precautions has sent me “Back to the Future” in Doc’s Delorean; I’m going back in time and reliving some of those painful memories again and again.
There was so much uncertainty then, so much we didn’t know, so much we never could have anticipated. And yet, I’m still haunted even though I’ve crossed over to the right side of things (or so we thought).
All of this makes me wonder when will my body fail me again? When will I just end up another number or statistic in someone’s medical journal?
The fear of being here for weeks scared me when we first were told we had to stay overnight. And then, a day or two has already evolved into a little more than a week. I just don’t want this to become a back and forth thing like it once was only 2-ish years ago.
I’m in the hospital; I’m out. I literally lose track of time. My memory fails me when I try to recall certain events.
There is one thing that really strikes me this time I’m in the hospital—how much a hospital stay affects those who love and support you. It’s truly a struggle every time something like ‘this’ happens. We have to play shuffleboard with the kids, the house, the dogs, etc. Who is going to watch the house? The dogs? Stay with Cass?
So why are you in the hospital, you ask?
Well just say there is a lot of icky crud going around. Brody and Bex would both had a fever off and on and had an awful cough earlier in November. Bro was out of school that Monday (the 6th), and still sick the next day so we kept him home. I first started feeling bad and ran a fever over the weekend of the 11th—mainly Saturday—and knew I needed to get well before Monday.
I had my port placement scheduled for the 13th—my cancerversary, the date I was diagnosed with acute myeloid leukemia (AML) while pregnant with Beckham three years ago.
See, I got approved for photopheresis–again. Remember when I was supposed to get that done in February but then I had a clot in my superior vena cava vein which resulted in me getting SVC syndrome and the whole photopheresis gig was put on hold? OK that was a while back, but if you don’t remember click the links above to refresh your memory.
I need a medi-port to get photopheresis treatments, and if this was going to help me in any way feel any better than I do, I was going to do it. However, my body had other plans. My body is a bitch like that sometimes.
I’d been coughing and what not and knew I probably should have postponed the procedure, but I went ahead and had the port put in any way. I started my first round of photo that day. I’m supposed to have treatments two days a week, back-to-back, for I don’t like five weeks or so. And, then I’ll slowly taper off…
On Tuesday, I went in to get my second treatment and went home feeling like shit. My guess is since that machine takes my blood and “cleans” it and then runs it back through my body, got all my toxins moving around in my body too. So, I pretty much felt like death.
Fever, severe coughing, and trouble breathing were the three main reasons for my hospitalization. I knew I was having a hard time breathing, but I didn’t know how much until we got to the hospital.
We arrived at my doctor’s office where they took a peek at me, gave me oxygen (5ml or something) and said I was for sure going to be admitted.
My oxygen levels were running in the upper 80’s to low 90’s and they want you to be anywhere above 95-100.
Only SIX hours later, we were finally taken to my hospital room—that I’ve now occupied for more than a week.
RSV – is a common, very contagious virus found in babies that infects the respiratory tract an lead to serious problems such as bronchiolitis, which is inflammation of the small airways of the lungs, or pneumonia, which can become life-threatening.
C-DIFF – Clostridium difficile (C. diff), is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon.
KIDNEY STONES – hard deposits made of minerals and salts that form inside your kidneys.
Beyond just the whole “struggling to breathe thing,” I had some significant swelling in my breasts and stomach, so much so, some nurses divulged the news they thought I was pregnant. Yeah, great to hear that you look 7 months preggers when you’re not… But they were being honest and I appreciate their honesty—though I’ll admit I did tear up a bit after they left my room.
I already feel like shit and that was the icing on the fucking cake.
The swelling was actually so bad that everyone had thought I had a boob job. That’s how high my ladies were (and still are) sitting up. If you know me, and if this is TMI then whatevs, but my breasts go anywhere but north–south, east, west. They legit haven’t seen the light hitting my neck in years, well without a bra at least.
But because they’re sitting so unGodly high, I can go without a bra— something I’ve never been able to do really. And as nice as that sounds, I’d take my saggy titties back any day over this shit. This hurts. I’m in legit pain because I’m retaining so much water everywhere. My body aches and is in constant pain and I even waddle like I’m pregnant.
When I went to the doctor this week (oh yeah, I finally escaped the hospital on Cyber Monday, ten days after being admitted), I learned I gained more than 10 pounds. Most of it water weight, at least that’s what I’m hoping.
I missed Thanksgiving.
I missed Beckham’s 3rd Birthday. We were unable to throw him a party.
I missed my parents’ anniversary…
I missed going to the Chargers vs. Cowboys game on Thanksgiving. Klay and I’d been planning to go all year and BOOM, another health bomb taking away so many moments of my life, yet again…
So it’s safe to say, I missed a lot.
Despite my health sitch, the boys did come up on Thanksgiving to see me and wore the shirts I bought them. They also visited on Bex’s birthday, Nov. 20 (which is also my parents’ anniversary).
That’s the thing—when you go in the hospital your world stops, but everything and everyone else keeps going.
November came and went. Now, it’s December and everyone is ready for the holidays and I’m over here wanting nothing to do with it.
Despite the joy I get from seeing the kids excited about Christmas, I’m just not in it this year. And I’ve always enjoyed the holidays and Christmas, but this year, I just don’t want to do it all. I don’t want presents, to be around anyone, or to go to any parties; the thought of all that makes me want to run far far away.
The only gift I want is my health back the way it was or even what it was last year. At least I could move around and do things.
I know; I sound all Grinchy and BAH-HUM-BUG and shit. I just really don’t want to hear or feel all of the holiday spirit that goes around this time of year. I’m in a funk. I don’t want all of the fa-la-la-la-ing to be up in my grill right now. I just don’t need it right now. I could care less about a tree or how to decorate it or to get any damn decorations down.
None of it appeals to me. Why? Cause I can’t do anything with any of that crap anyway. I’m useless. And, being useless is not for me. I’m supposed to do stuff. I’m supposed to take care of my kids, my husband, my parents, my grandparents–my family.
I really thought this year was going to be better for me in a big way. And I suppose it was in a lot of ways… this year, I’m finally admitting to myself that life isn’t ever going to be the same for me. My body will never be the same. I will never be the same.
This chronic disease I’m living with will take its toll on my body for the rest of my life.
I may get a little better but I will not ever fully recover–according to the docs. My skin will never be the same (it will stay dipple-y and gross looking, and if you haven’t seen it good for you), my weight will never be the same (I’ll continue to bloat), my muscles will never be the same–everything changed with that damn stem cell transplant and a lot of awful medications.
Yes, I know the stem cell transplant saved my life, but it also ruined my life. I know I sound ungrateful. I’m not. I’m really not. If anything I just wonder why did it work for me and so many others never even had the chance to get as far as I did in the process.
So many people have it worse than me–way worse. It’s not right for me to complain; it’s not. I know this. But am I someone who can deal with this forever? Can I really keep my head up when I feel I burden everyone so much? I don’t know if I’m the type of person that can adjust to this way of life. I just don’t.
I’m at the mercy of GVHD.
Now I just have to learn to live with it. And, I hope I can learn for the sake of my children. I hope I can make their childhood the best that it can. That’s all I really care about. That and my husband. I hope I can make his life a good one. He’s been dealt a shitty hand in the whole “in sickness and in health” thing. That line really screwed him over,
I guess now I have to watch all of the people I care about be brought down by me and my disease. This is the shit no one talks about. The pain of how your life changes so much after you ‘survive’. Surviving is the hardest part of this whole entire process. Death would have been easy; it would have been an event to move past. But living with this shit? That’s the real test. Living.
Negative Nancy in full force today,