MY CURRENT LEVEL OF CASUAL EVERY TIME A NEW HEALTH ISSUE ARRISES
Back in February I had to call 911 when Jeff was having chest pains. I went downstairs to let the EMT’s in and they thought I was the landlord because I was super chill opening the door for them like, “just bring that stretcher right in here.”
The first time you witness chemo induced nausea:
The 10th time you witness chemo induced nausea:
What it feels like the first week of 24/7 inpatient transplant:
What it feels like halfway through inpatient transplant:
What it feels like the last week of inpatient transplant:
When nurses wake you up for 4am blood draws:
When you’re in a group of people and all you can think about is neutropenia:
When you ask a cancer patient if they need a wheelchair for the first time:
When you ask them if they need a wheelchair for the 10th time:
When you spend hours on Web MD and Symptom Checker before seeing your doctor:
When you scramble to the ER and forget to pack your own bag:
There’s only one thing people want to talk about less than cancer and that’s the ICU. Shortly after my last blog post in February, my husband ended up there. I always thought being sent to the ICU was the “beginning of the end”, but I was wrong. The Intensive Care Unit saved Jeff’s life. Now I want to sing their praises. Literally, with ‘Private Eyes’.
“I.C.U. and you see me… They’re watching you.” How comforting! They’re watching out for you. So closely.
Let me back up and tell you how we got there.
Something no one warns you of is how, post chemo, your veins can get a little…leaky. I don’t want to be too graphic (novel) here but did you see the first X Men movie? Do you remember what Magneto did to Senator Kelly? Do you know how much I hate myself for using this reference? Senator Kelly went from 70-ish% water to 100% water and that was the end of him.
Chemo can cause fluids to go to places they aren’t supposed to go. Sometimes the fluid will cause your legs and feet to swell. It can also end up somewhere dangerous, like in your lungs. Sometimes the water will go straight past your kidneys and your body will believe you’re dehydrated, causing you to drink more water. The cycle continues.
This is what happened to Jeff. He hadn’t been eating well post transplant yet he also hadn’t lost any weight for weeks which was confusing. We didn’t know he was carrying around 20 pounds of water weight around his organs. They warn you that transplant patients can lose or gain weight because of changes in metabolism, so we chalked it up to that. It’s an incredibly insidious thing. More insidious than the amount of Insidious sequels that exist (give it a rest Hollywood). Even now, with Jeff no longer retaining fluid and eating enough to feed a family of four, he’s still losing weight. Most of our conversations are like this now:
So, one morning Jeff wakes me up with chest pain that’s a 5 out of 10 and it quickly progresses to an 8 out of 10 and I call 911. When we get to MD Anderson they do some scans and his lungs are full of fluid. They do a thoracentesis, which is just a Harry-Potter-mythical-creature-sounding word that means they took the fluid out of his lungs. They did this by – how do I explain this technically – punching a hole in his back and putting a suction tube in it. They got a couple of liters (!!) out and he was able to breathe without the chest pressure… temporarily.
That’s when his lab results showed abnormal kidney function. It suddenly plummeted. Our doctor came in to tell us he’d like to send us to the ICU but that it was “precautionary” – not that he needed it immediately, but better safe than sorry. I remember thinking, “this is what they tell everyone I bet”. I was numb. Jeff wasn’t protesting. I knew that was a bad sign.
Let me be honest – the walk to the ICU feels BLEAK. It’s always tucked away from the higher traffic floors. There’s even a special elevator to get to them. There are less windows, if any. The rooms are small and cramped with all sorts of machines. There’s only a recliner, unlike on the regular floors there’s at least a bench to sleep on. I’m actually still confused by this, considering the ICU seems like the place you’d be much more likely stay overnight as a caretaker.
As a side note: I am a terrible sleeper and I can’t sleep unless I’m completely flat. In the ICU I ended up shoving my suitcase in between the recliner portion and the ottoman so I could lay down. It worked perfectly. I highly recommend.
It was around midnight when they transferred us and I couldn’t help but pay attention to every single detail. Patients hooked up to breathing machines, unable to move. The doctor asked me to go to a waiting room while Jeff had an arterial blood pressure line placed in his wrist. It seemed painful and he seemed so out of it (they wouldn’t give him pain medication for fear his blood pressure would get dangerously low). I was so worried that I lasted in the waiting room for about 10 minutes before I was right back outside of his room. He could look out at me through the glass doors while they did the procedure, but I knew I was blurry to him without his glasses on. I just kept making a heart with my hands at him like I was in a stupid Taylor Swift music video.
It was all I could do and I LOST IT. I moved around the corner where Jeff couldn’t see my blurry figure and collapsed on the floor. His nurse happened to just be coming out of the room to check on the dialysis machine when he saw me. He stopped, knelt down and said, “Everything is going to be okay”. He got right back up, helped me into the room, and then assisted another nurse in lining up the 100 or so clear bags needed for the dialysis machine (I wish I could explain what these were for, but I have no idea. Still today I’m convinced dialysis machines run on magic).
I found the nurses in the ICU to be the most empathetic, strong, tactful people in the hospital. They were always aware, walking a fine line with their interactions: not too jovial because the place is a constant reminder that people die, but also not despondent because people are trying to cling to any trace of hope. This just a small layer on top of their many daily actions that make a difference between life and death.
I don’t know how much time I spent thinking about the lives of ICU nurses. It’s amazing what the brain does when simultaneously in trauma and void of stimuli. I don’t even remember Jeff looking as sick as he did at the time. I was like the Shallow Hal of health. I’m pretty sure this was my brain’s way of protecting itself.
Jeff remembers very little of any of this. I had spent most of my time worried about the amount of pain he was in to later find out that his brain was also protecting him. The extreme stress on his mind and body took him to a dream like state where all he remembers is thinking he was on a train with me.
Over the next two weeks Jeff had:
- a groin catheter placed for dialysis
- a drain placed in his heart for pericarditis
- his picc line replaced
- an endoscopy and biopsy to check for GVHD
- around the clock breathing treatments
I made a lot of Top Gun references. It was my excuse to call him Goose.
After his kidneys normalized, we were transferred back to the transplant floor where we spent another two weeks. We were discharged from the hospital in mid March after a full recovery. What transpired was something known as Multisystem Organ Failure and when it happens after transplant it is, more often than not, the cause of mortality. We’d been on the lookout for something like sepsis, not something as simple as excess fluid. We now know how important it is to carefully monitor fluid intake and output after chemo, but especially after myeloablative conditioning.
Jeff and I celebrated with a big ceremony on May 13th – it was the goal line we’d set at the start of transplant. Because of MD Anderson’s ICU team’s care, we made it. We are day +160 post transplant.
My husband has reached day +40 after allogeneic stem cell transplant. We’ve spent almost the entire last 2 months in the hospital and now we finally get to go home! Time to taste that sweet, sweet freedom.
WELCOME TO OUR NEW SCHEDULE
8:00am – I walk the dog and make some coffee that tastes like 40% creamer and 60% George Michael’s 1990 hit FREEDOM.
8:30am – I administer my husband’s first medication, Cellcept (to prevent Graft Versus Host Disease), which has to be taken on an empty stomach. I also wait an hour to eat breakfast because I’m not a monster. My husband’s body is hurting and he can barely walk thanks to the conditioning chemo he had weeks and weeks ago, so I run him a bath. Other than hard drugs equivalent to heroin, this is the only thing that seems to help.
9:00am – I feed the dog. I get the first “What’s the update???!!??” text of the day. I throw my phone in the trash. I help Jeff get out of the bath since he’s on Lovenox blood thinners so if he fell thanks to the neuropathy and hit his head, he’d die. Baths are super stressful now. Speaking of Lovenox, time for the first Lovenox injection of the day! And breakfast. And then more pills…
10:00am – breakfast is finished. Time for the pills that need to be taken on a full stomach: Gabapentin (for his nerve pain), Protonix, Tacrolimus (both of these are drugs to prevent GVHD), Ibuprofen, and CMV med infusion (to prevent a virus rearing it’s ugly head). I have to wear 2 pairs of gloves when giving him the CMV meds because it absolutely CANNOT touch my skin, even though I am injecting it into his body. I know they are very serious about this because I had to take a long class on how to do it properly and the meds are stored in a bright yellow bag marked CHEMO that is currently in my fridge surrounded by all the foods I’ll eventually digest. This seems super safe. And CRAAAAP and I was supposed to take the CMV meds OUT OF THE FRIDGE 2-4 HOURS AGO to give it time to reach room temp. I take it out of the fridge. I’ll just have to do the CMV infusion at the hospital. We have daily 5 hour outpatient infusion appointments so Jeff can get the rest of the meds they don’t trust me with, even when double gloving it.
(basically me and Jeff twice a day)
10:30am – I walk the dog again and shove an oatmeal cream pie into my stupid face.
10:50am – I can hear our dog Yelp from inside our apartment as Jeff shuffles down our apartment complex’s hallway. It’s the longest hall of all time to get to our parking garage. Why didn’t I think about this when we moved in!? Where can I steal a wheelchair? I’ve decided that next time I’ll roll him down to the car in our computer chair.
11:15am – We pull into MD Anderson and the closest parking garage is FULL. We’ll be late for our appointments if we spend 20 minutes looking for parking so we valet it and grab a super convenient (and pink) wheelchair. Also it’s Wednesday, and on Wednesdays we wear pink. Can’t wait to get home after this, maybe I’ll relax and watch Mean Girls!
11:30am – We make it just in time for the 11:30am blood draw appointment. We check in on the computer and wait to be called.
11:45pm – My husband’s blood is drawn. They realize one of his PICC lines is clogged. He’s had issues with blood clots before so after our infusion appointment, we’ll need to go see the IV team.
12:00pm – I push Jeff’s wheelchair up to the 10th floor to wait for our infusion appointment. The lab is behind today, so Jeff falls asleep in his chair as I grab a grande Caramel Machiatto for my stupid face.
(when I see this I think, Tuffy the Satire Slayer)
1:00pm – I’ve finished my coffee and I’m looking at memes on my phone like a 12 year old boy when we’re called back. Jeff’s vitals are taken, his heart rate is better than it’s been in a week. I feel a sense of victory, like I’m somehow responsible. We’re led into our own room for infusion time.
1:20pm – Jeff settles into bed and I take my seat in what has the comfort level of a high school homeroom class chair. His lab work print out is brought in. His hemoglobin is on the upswing. Jeff looks GREAT on paper but unfortunately still feels like crap in real life. I take out my laptop and check my emails before realizing I forgot a prescription that needs to be picked up at the pharmacy. Feeling super lucky today because the pharmacy just also happens to be on the 10th floor! I love that because this place is huge and I’m ready to be lazy.
1:45pm – I’m waiting at the pharmacy. Turns out his preventative anti fungal is NINE THOUSAND DOLLARS. That’s right, $9,000.00. Even with running Jeff’s Blue Shield insurance it would cost hundreds and hundreds of dollars for a month supply. I’m given a coupon to use with it and, once they can get them to approve it, I’ll have to pay only $100. I listen to an elderly woman next to me be told her insurance doesn’t cover a lot of her meds and that her total is $22,000. Fired up on espresso and rage, I start to understand the concept of suicide bombings.
2:45pm – After nearly an hour wait for pharmacists to talk to Blue Shield (which I am v grateful for), I have the 2008 Toyota Prius priced prescription in hand and I’m making my way back to my husband’s infusion room.
3:00pm – My husband has the IV fluids, magnesium, and an antibiotic finishing up and now they hook up the last antibiotic. I give him his mid-afternoon pills: Ibuprofen round #2 and Cellcept on an empty stomach round #2. I ask about hooking up with CMV infusion. They make me do it because they’re not allowed to touch it. I’m basically a nurse now. The CMV meds make Jeff nauseous so I give him a Zofran. #ZOLTAN
4:15pm – Now that the daily infusion is complete, we make our way over to the IV team to have his clogged PICC line looked at. I hope they can get it unblocked because he’s had a PICC line or port in every part of his body and the only place left is to put an IV in his groin. I saw a mere diagram drawing of this groin catheter situation in a catheter class and nearly passed out.
5:20pm – It’s freedom o’clock. Can’t wait to get home and watch some Forensic Files. I wheel Jeff back down to MD Anderson’s first floor and pay $15 for valet. The wait time is 20 minutes. We wait for what feels like an eternity. Every time someone coughs I think about how Jeff will eventually succumb to pneumonia because of this very moment. I’m not in a great place. Maybe the reason I watch Forensic Files because life is unfair and hard but at least I’m not getting murdered??
5:45pm – Our car pulls up and I tip the valet 2 bucks. They’re always super nice and I don’t think they get tipped often. Honestly, though, people with cancer are paying for $22,000 for a measly pocket full of life tic tacs, so I get it.
6:00pm – We shuffle back to our apartment and our dog loses her mind with excitement. She pees a little bit on the floor, which is unfortunate because we have carpeting. I’ll have to steam that later. I take her outside before there’s more than just pee on the carpet. It’s hard to be mad at someone who is so excited to see you that she pees a little bit. I go back upstairs to steam the carpet.
(throwback to a pre stem cell nap)
6:30pm – I steamed that section of the carpet with antibacterial because, if you weren’t aware, my husband has cancer. No laundry today because I did it yesterday. Go me. I’m basically a 1950’s housewife. And a nurse. Except I forgot about dinner which is rapidly approaching and, unlike a 1950’s housewife, I can’t cook.
7:30pm – I make something like a CPK pizza. Jeff’s taste buds are coming back and he is super pumped about it. Even if he wanted something super healthy, like a salad, he can’t have it until day 100 because raw foods could literally kill him at this point. Thank God we’re in Houston because this would not fly in Los Angeles. I remember to take out the CMV Chemo from the fridge this time.
8:45pm – We’ve finished eating. I want to Netflix and chill but I should probably shower. I have enough dry shampoo in my hair that I resemble a 17th century judge.
9:30pm – I flush Jeff’s PICC line and administer the CMV Chemo. I wait for it to finish and then flush it with Heparin. We keep the blood thinner companies in business, so I give him his second Lovenox injection of the day.
10:00pm – I give the dog a night time walk and, once back in the apartment, I wash my hands at an OCD level. I give Jeff his night time medicines: Cellcept, Ibuprofen, and Colace. I also give him a Dilaudid or Ativan if he’s in a lot of pain and can’t sleep. Mostly, that’s not a problem because fatigue is a side effect of about 18 of the medications he’s taking. He doesn’t sleep as much as he enters a light coma.
10:30pm – We’ve done it. We’ve made it through our first day home post transplant! Maybe now I’ll watch FOUR HOURS of 48 Hours Mystery with my headphones and my laptop light on the lowest setting in bed next to Jeff tonight. I check my MyMDAnderson appointments page to find out our infusion time tomorrow. It’s 6:00am. I shut my laptop and throw it in the trash.