Less GVHD, more HGTV (Day +216)

GLOW. It’s a fantastic Netflix series I binge watched the entire first week of July. Little did I know, while I was watching lady wrestlers battling it out in the 80’s, there was a battle going on right next to me…

It was Graft versus Host. Jeff’s New Immune System versus Jeff.

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Jeff and I were totally under the impression that we were in the clear by July. The more dangerous stages of GVHD normally occur in the first 100 days and he had avoided it. Or so we thought.

GVHD occurs when immune cells identify the body as something foreign. You actually hope for a LITTLE bit of GVHD, because the cell’s ability to recognize what’s foreign is what fights the cancer. If your new immune system is too similar to your old one, it won’t know to fight the cancer.

This is why GVHD has a higher chance of occurring if your stem cells are from an unrelated donor. Jeff’s stem cells came from his sister, and they were a complete HLA match (jackpot!) but GVHD also has a higher chance of occurring when stem cells are given female to male (or vice versa). ISN’T THIS ALL EXHAUSTING? But wait, theres more:

All allogeneic stem cell transplant patients are given drugs to suppress the new immune system. They’re slowly weaned off so that the cells have time to get familiar with their new body and not attack it. Here’s a gif representation:

IN THE BEGINNING THE CELLS ARE LIKE THIS

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BUT AFTER WEANING OFF IMMUNE SUPPRESSANTS THEY CAN GET LIKE

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Jeff’s new immune system seems to have qualms with his digestive tract specifically. It’s preventing him from absorbing protein, which didn’t sound so terrible at first – big deal! We’ll go to GNC and get some Muscle Milk, solve this here and now. Except it doesn’t work like that (but I, a non intellectual, was willing to try it). The lack of protein becomes a big problem because protein begets albumin, which is what keeps water in your veins. Without albumin, things (your organs, specifically) can take a quick turn.

The first thing doctors do when they realize you have GVHD is give you a very high dose of steroids and cross their fingers and hope it works. It only works for about 30% of patients. When that doesn’t work (like it didn’t for Jeff), photopheresis is the next option. Here’s what it looks like:

The photopheresis machine has a very nonthreatening sound to it – like a Cessna during taking off.

Jeff had a new access line placed into his chest so that they could run his blood through this machine. The photopheresis machine separates the immune system cells and – for lack of a better word – sunburns them so they become less cranky. They then circulate the cells back into his body. He does this 3 times a week, for 2 hours at a time, and it takes weeks to see an effect. This is rough because sometimes the GVHD is so acute that people can’t wait weeks to see results. There has to be something better than this, right?

Enter Jakafi.

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Jakafi is the drug’s given name but I prefer to call it Jafar.

Jakafi was originally created for Polycythemia Vera, a slow growing blood disorder. The pill works by lowering your blood cell counts (it’s essentially chemo). Researchers found that it’s effective on some GVHD and so it was approved for off label use only in the last couple of years.

So we waited for the drug manufacturer to approve Jeff’s use of Jakafi, then we had to wait for insurance to approve the cost. This took a week and it often takes much longer. This is a huge issue when each pill costs around FOUR HUNDRED DOLLARS. Jeff takes 4 of these a day. A nurse dropped one on the floor yesterday and I nearly threw up.

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Jeff is on day 12 of Jakifi and it can take weeks to work. Each day in the hospital stretches into the next. I find it ironic that the only thing that gets Jeff’s mind off of everything is watching back to back episodes of HGTV shows when we’ve had our fill of acronyms this year.

Every day we risk a life threatening infection by continuing to wipe out his immune system to control the GVHD. Because of this, numerous antibiotics and antifungals are given daily via IV. This puts incredible strain on the kidneys. There has to be perfect balance, so nurses and doctors are working around the clock to keep his body running. It’s a lot like a symphony. The most expensive, anxiety inducing symphony. It’s like the symphony they hired to record the score for JAWS. And for now, all we can do is “wade”* it out.

*I’m so sorry, but not sorry for this.

 

 

Day +200

MY CURRENT LEVEL OF CASUAL EVERY TIME A NEW HEALTH ISSUE ARRISES

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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.”

More Gifs About My Husband’s Cancer

The first time you witness chemo induced nausea:

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The 10th time you witness chemo induced nausea:

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What it feels like the first week of 24/7 inpatient transplant:

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What it feels like halfway through inpatient transplant:

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What it feels like the last week of inpatient transplant:

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When nurses wake you up for 4am blood draws:

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When you’re in a group of people and all you can think about is neutropenia:

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When you ask a cancer patient if they need a wheelchair for the first time:

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When you ask them if they need a wheelchair for the 10th time:

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When you spend hours on Web MD and Symptom Checker before seeing your doctor:

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When you scramble to the ER and forget to pack your own bag:

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WEAR YOUR FACE MASK, BEN

Another HSTCL patient and new friend of ours, Ben, is heading into transplant soon and he’ll be the first HSTCL to undergo a double cord transplant. He recently spoke about his diagnosis and it’s amazing hearing him so honestly talk about it. We can’t wait for him to join Jeff in remission!

(you can donate to his Go Fund Me here: http://www.gofundme.com/cushingsmedicalfund )

THIS IS +40: Life After Allogeneic Stem Cell 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.

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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.

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(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.

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(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

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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.

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(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.

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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.

 

 

Chemo: What to Expect When You’re Expecting Mostly Nausea

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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!?

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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.

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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.

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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.

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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.

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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

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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

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(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.