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.”
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.
Before I had personal experience with chemo, movies and TV led me to believe that the nausea was the most traumatic part of it. Apart from losing your hair – but, wigs! Fun! Right, Samantha!?
In reality, what Jeff experienced was a myriad of things. He refers to this cluster of uncomfortable side effects as a “hangover times ten”.
TYPES OF CHEMO
There are many different types of chemo and they all look different. The first chemo Jeff was given was Doxorubicin, which chemo patients call the red devil (thanks for giving it this super chill, non threatening nickname!) because it looks like bright red Kool Aid.
Some chemotherapy drugs are clear. Some are given through an IV, and some require a patient to have a port or a picc line put in.
THE MEDICAL STAFF WILL LOOK TERRIFYING
Nothing rattles the nerves of a first time chemo patient like seeing the nursing staff bring over a chemo bag like it’s a scene in the movie Contagion. Everything is labeled hazardous to boot. The nurses handle so much chemo a day that they simple cannot be exposed at all to it, so they wear gloves, a gown, and a mask.
Chemo hasn’t advanced in a very long time, so if you can find any comfort in this, just know that the chemo you are about to receive has likely been used to cure many people since the 1950s.
NAUSEA
Jeff only had nausea once, on the first day of chemo, and that was because he hadn’t been prescribed a high enough dose of Zofran. Zofran got FDA approval in the 90s and it’s incredible. I also can’t hear the name without going, “ZOLTAN!”
Zofran completely gets rid of nausea for Jeff. That being said, all bodies are different. Some people respond better to a medication called Phenergan, or an anti nausea medication supplemented with something else like a sedative called Ativan. If something isn’t working for you, don’t be afraid to try things until you do. There’s no reason to be miserable. Even if you’re a masochist, it’s not worth spending the little energy you have (it’s needed for healing!) on tolerating a side effect.
WAIT FOR IT…
You don’t feel the effects of chemo immediately. I remember the first day of Jeff’s chemo. We watched the liquid move out of the bag, into the IV line, and slowly up into his port, watching as if it would hit his chest and he’d suddenly morph into a werewolf.
The most he felt was brain freeze from all the ice he was eating to deter mouth sores. It was anticlimactic. A few days later we saw the effects. It always happens around the same time white cell counts bottom out.
OTHER COUNTS WILL DROP, TOO
Expect hemoglobin and platelet count to drop along with the white blood cell count. This is normal, but low hemoglobin and platelets require transfusion if they drop below a certain amount. Every hospital/doctor has a different number requiring transfusion, but for MD Anderson it’s Hemoglobin under 8.0 and platelet count under 20.
MOUTH SORES
These are THE WORST. If you’ve ever had a cut in your mouth or a canker sore, it’s like that but imagine about 70 of them in your mouth at one time. You can’t eat, so be prepared to have smoothies. And not with too much fruit because – guess what – fruit juice irritates the sores. FUN.
MUCOSITIS
I call mucositis mouth pain on cocaine. The mouth sores were bad during the initial chemo but Jeff didn’t have mucus production. After myeloablative chemo (the most intense chemo) Jeff required suction at his bedside. The bucket would fill almost daily. It’s intense and does not subside until your white blood cell counts recover.
Clearing out mucus production is constantly like this:
And leaves you talking like Christian Bale as Batman for a couple of weeks after.
You hear a lot about chemo but not about the other medications that supplement the chemo. You may also have to take:
STEROIDS which cause HUNGER
Some chemos require steroids because of their T Cell repressing qualities. Steroids make you very emotional and hungry. Hangry or, as I call it, Chemotional.
When our doctor first gave my husband the steroids, I was the one he gave the warning to. “This could make your husband irrational. We’ve seen people throw things at their spouses.” His advice was basically to duck. Apart from eating an entire sleeve of cinnamon rolls at 6AM, Jeff never did anything completely irrational. He did get into an argument with someone he didn’t know on Facebook that I might have instigated circa Trump election. Jeff on steroids was mostly just like me on my period.
NEUPOGEN / NEULESTA which cause BONE PAIN
Once you’ve had chemo you’ll have an injection in your arm or stomach with a bone marrow stimulant. This will help your body quickly get new white cells in action. The quicker your white cells rise, the less likely you are to have an infection. It’s important to avoid infections at all costs. Also see: face masks below.
OPIOIDS which cause CONSTIPATION
All of the pain management drugs cause constipation, including a lot of anti nausea drugs. Chances are that if you’re having chemo you’re going to take something that causes constipation. Sure, it isn’t fun to talk to your doctor or anyone else about, but the consequences are serious. I talked to a stem cell doctor who lost three young male patients from bacteria introduced via enema. Medications used to counteract constipation (such as colace and miralax) do not have an IV form. If you have mucositis and can’t swallow, this leaves you vulnerable. Regularity is so important that you’ll go from someone who’s never peed with the door open to being like
PORT ISSUES
Ports often get tangled or kinked inside the body. Something as simple as a cough can coil the line inside the chest. Having to go in and have the port fixed is nerve wrecking, but it’s a common occurrence I’ve found in patients. Having procedures done to correct the port might happen a fair amount during your treatment. Jeff had a port inserted and then about a month later doctors had to do a procedure where they went up through the groin to pull a kink down. Then, after additional issues, the port had to be removed and another one placed on the other side of his chest. Very scary when you’re dealing with low blood counts because, again, risk of infection.
FACE MASKS
(not this kind)
Infections can be deadly. No night out to dinner or the movies is worth risking organ failure. That’s why, even when Jeff’s white cell counts were normal, he’d wear a face mask out at all times. We also took extra precaution and kept our distance from people who were around lots of other people. Children were no-nos. Think about all of the other children a kid comes in contact with at school and then those germs/bacteria are brought into your home at the end of the day. What I’m saying is – bathe your kids in Purell.
Don’t risk shaking hands. Remember to disinfect your cell phone. Be nice to people…from a distance.
It’s time to take care of yourself.
That’s probably not how you saw this post starting out. The entire point of caregiving is to care for someone else, not yourself. You’ve probably come to terms with the sacrifices you’ll make. You’re already imagining yourself saying things like, “this Oatmeal Cream Pie is fine for dinner”, “I don’t have time for feelings when there are so many things to do”, or “this bench I’m sleeping on at the hospital is killing my neck but my husband may or may not be dying so who cares!”
I went into caregiving the only way I knew how: Non Stop like Liam Neeson. For an entire 3 out of 12 months in 2016 I lived in a hospital room. Short term stays, long term stays, I’ve done them all. And I mostly didn’t give a shit because I grew up watching Nickelodeon GUTS, preparing for my own personal Aggro Crag and doing anything it took to get to the top.
Except it wears on you and before you know it you’re hooked up to a heart monitor yourself. I’m not being dramatic, that’s just what losing 12 pounds in two months followed by quickly gaining 6 of it back in vending machine foods will do to you. I’m on beta blockers now but I’m still fiercely worried about this:
Is Broken Heart Syndrome Real?
Everyone will push you to take care of yourself but it feels almost impossible, so I’ll lay out some things here that you can do for yourself.
PLANNER / NOTEBOOK / HOLE PUNCH
You’re going to get an Erin Brockovich level of paperwork to deal with. You’ll feel compelled to throw it away. DO NOT throw anything away. Nothing holds people accountable like a binder with facts. Bring a hole punch with you into the hospital to show staff you’re not here to mess around.
Learn how to read your blood work and don’t be afraid to ask questions. At UCLA, everyone hated when I had questions but I asked them anyway because I probably have PTSD and don’t trust anyone. Some doctors don’t like when you’re too involved but good ones will always want you to understand your body. When I first started asking questions I could see the look on their faces: I was a wife with Google and a case of denial, but guess what? It wasn’t denial, it was a hunch. And that’s what saved Jeff from complying to their treatment and getting sicker. Always double check things and ask questions. This one’s for your mental health and their physical health.
FIND AN EASY WAY TO GIVE PEOPLE UPDATES
I spent so much time updating people individually in the first few months that it was like I’d gone on a silent retreat where all I did was text. Save yourself the time and set up a page where you can post updates from the beginning. If you’re also looking to raise money for healthcare you can do this all in Go Fund Me, or if you’d like to keep it private you can use CaringBridge.org. You can also set up a Facebook group (which you can make public or private).
PACK A BACKPACK
Have a backpack packed and ready to go for last minute ER trips. Underwear, pajama pants, a clean shirt, a travel toothbrush, toothpaste, a sweatshirt, one of those airplane neck pillows, and a snack (like a granola bar). ER trips happen with a quickness. All it takes is a sudden “I feel warm” and seconds later you’re looking at a 101.5 Degree fever. Nothing says ‘from the house to the car in one minute flat’ like the fear of sepsis – and with a pre-packed backpack that minute includes calling someone to watch your dog. If you’re thinking a snack is overkill, sometimes you’ll go into the ER thinking it’ll be something “quick” like a transfusion (4-5 hours) and other times you’ll be admitted for days of testing but you won’t get an inpatient room (aka no food) for 8-10 hours. Basically, always have necessities and comfortable items on hand.
DRESS LIKE A BASIC BITCH
Speaking of comfortable, no one knows it like a basic bitch. In the beginning I’d bring jeans along to the hospital stays to change into. That didn’t last so long. Nothing says “hospital pro” like slippers/Ugg boots and stretch pants combo.
Don’t stop with basic-ing yourself. Basic your husband, too. Ugg slippers for men. Stop cringing. These bad boys protect your heels when you’re heading for a collision with your IV pole. Boxers. Soft ones. Dare I say…silk? Stop cringing. Sorry to bring up Ugg again, but this robe.
GET GOOD SLEEP
This is easier said than done. If you’re in the ER, you have an awful recliner. If you’re someone who is doomed to only sleep on their side (me), this is a real problem. You’re going to want to remember that airline pillow in the backpack. For longer term hospital stays (like for stem cell transplant), bring a cot like THIS ONE. It’s light enough to carry on your own and you can set it up to sleep right next to the hospital bed so you can be the sleeping equivalent of a couple who sits on the same side of the booth at a restaurant.
The REI cot is much better to sleep on. The cushioned benches are just as hard as you’re imagining and if you’re over 5’9, forget about it. My feet stuck out of the side. I can finally imagine what Abe Lincoln felt like.
Bring a couple of your own blankets and a pillow, depending on how finicky you are with sleep. The hospital pillows are essentially gauze stuffed with tissue paper, but if your neck is made out of whatever Gumby is, you’ll be okay.
SET YOURSELF UP FOR MENTAL STABILITY
I’m talking about a support system on speed dial. If you need to see a therapist and can’t leave your loved one, there’s an app called Talkspace where you can text with a therapist in your own time.
Anti depressants. If you’ve struggled with depression, now is the time to have a plan. In a run-of-the-mill month I could fight my way through a depressive slump but having my husband depend on me both physically and mentally didn’t leave much room for depression. I went on Zoloft for the first time in my life and even my husband noticed a difference in my ability to cope.
FOR LONGER TERM HOSPITAL STAYS
Puzzles. Adult coloring books. DVDs… But make sure they don’t have cancer or death in them if you’re at capacity. Cancer and death are super hot in Hollywood right now.
A white board to stay motivated. Put goals on it (activity/meals/medications to remember) and display it in a place that will push and remind you.
Keep your life in your peripheral. Nothing moves healing faster than thinking about the good things in the future. There’s this company called Fathead I used to make peel off murals that they’d allow in the hospital room. Our puppy is directly where my husband can see her.
TRY A LITTLE TOO HARD BECAUSE WHO CARES YOU’RE GOING THROUGH CANCER
Twinkle lights. These are 18 dollars. Powered by 2 AA batteries. Ambiance.
A Fitbit – this is a great way to check your loved one’s heart rate when they’re off heart monitor and you’re awake and watching them breathe and wishing you knew what their heart was doing because you are a hypochondria ridden basket case.
Toilet paper that doesn’t suck. This actually could go up in necessities but I don’t like to pretend I know what other people’s butts require. What I do know is that the hospital toilet paper is probably what the hospital pillows are stuffed with, so not the best quality.
A foam roller – you can get one small enough to pack in a suitcase here. This really helps when you’re sitting/standing in one room most of the day.
Foods you can nuke. I like to rotate Rice A Roni and those little cups of Velveeta mac and cheese with actual food. If you’re going to be at MD Anderson there are coffee stations but they take $2.50 in quarters. This is why I’m at the Starbucks in my basic bitch outfit twice a day, so if you spot me please feel free to stop me and ask me about my husband’s cancer.
Now that my husband’s life was on the line, I found myself unable to look away. Because I had to be active in his care, I saw things that could literally save people’s lives if they only knew about them.
The biggest thing I’ve learned over the past seven months is that people don’t normally talk to each other about their treatment. The second biggest thing I’ve learned is that medicine is not a science. The medical industry is more like:
than it’s like this episode of Vice:
My husband was misdiagnosed at a Top 5 cancer hospital. We were told with 99% certainty that he would die within months. Months later, when they discovered they were wrong, they didn’t react like it was out of the norm. When we got to MD Anderson, they told us what we weren’t surprised to hear: 35% of cancers are misdiagnosed.
Ask Me About My Husband's Cancer 
