Allogenic Stem Cell Transplant – Ask Me About My Husband's Cancer

How to Know if You’re Getting the Best Cancer Treatment (and Why it’s Likely You’re Not)

Posted on January 17, 2018January 25, 2018 by jessicarblackwell

If you’ve found this via Google, chances are you’re just like me in 2016 – you’re “terror skimming” for facts. I don’t want to lose you, so I’ll get right to it. Below are 5 absolute necessary things needed to avoid going down the wrong cancer treatment road (I’ll save my reasons why / fun time gifs for the expanded portion below). STRAP IN, HERE WE GO:

1) Get a hard copy of your pathology report. Read it.
2) Ask your oncologist to send off a copy of the pathologist report and slides for a second opinion at a larger cancer hospital.
3) Look up clinical trials to see if you’ll have better odds than the standard treatment you’re offered. This is because…
4) Hospitals cannot tell you if there’s a better treatment offered with better odds elsewhere. Legally they cannot inform you/refer you out so they’ll stick you on their standard of care even if it leads to death.
5) Chemotherapy treatment also differs from hospital to hospital. The chemo regimen most effective for your specific cancer might only be available at certain hospitals.

Above all else, those 5 things are the most important. And you’ve made it here, so you’ve read them all!

You might’ve had questions while reading the top 5 like, “Why?” so now I’ll expand and throw in some bonuses:

1) Ask for your pathology records. Physically read the pathologist’s details. I say this from personal experience. I was told my husband’s cancer was 99% angiosarcoma, yet when I asked for pathology records nearly 3 weeks later (I’ve learned my lesson) the report said “precludes diagnosis”. They weren’t sure at all, but by this point he’d already received 2 cycles of heart toxic chemo for a cancer he never had. Get your eyes on those records!

2) Get a second opinion from a pathologist at a major cancer hospital. You can ask your oncologist to send the biopsy slides to a more experienced pathologist at MD Anderson or Memorial Sloane Kettering. This is free to you. It’s possible they’ll come back with another opinion, like it’s a different cancer or a different staging (which can require a different treatment). If your treatment feels extreme, get a second oncologist opinion.

NOW THAT YOU KNOW YOUR DIAGNOSIS…

Find a cancer specialist. They might have access to clinical trials for your specific cancer. Trials are free to you. On the subject of trials…

3) You can find them here: https://clinicaltrials.gov/
Trials are only offered through certain clinics and institutions so where you’re being treated possibly won’t ever even mention them. Facebook groups for certain cancers are the best place to hear about these trials and see first hand how they’re effective.

4) Many hospitals cannot refer you out, even if they know you have better odds on a treatment that they do not carry. For example, a UC hospital will put you on chemotherapy that only has a 4% survival rate and NEVER tell you there is a trial with an over 50% survival rate offered a 5 block walk away. Cancer patients can be worth millions of dollars to hospitals and they do not want to lose you. Many people feel that by getting a second opinion that they are betraying their doctors. It’s a matter of life and death so don’t be beholden to…

5) Even hospital to hospital, the chemotherapy regimens differ. For example, MD Anderson is the only place that offers HYPER CVAD (because they came up with it). Hyper CVAD has shown the best outcomes for non relapse remission in the cancer Hepatosplenic T Cell Lymphoma (you can find this info in medical paper case studies). This is what led my husband and I from Los Angeles to Houston. If Hyper CVAD performed the best, we’d see if insurance covered and then move to have access to it.

6) If you’re going through a cancer treatment like a stem cell transplant, you may have to deal with many side effects that can be life threatening. These life threatening side effects often have very few treatments (like steroids). Major cancer hospitals will also have access to trial medications for those side effects that other hospitals won’t have access to, like Jakafi. Jakafi is a medication that is still in it’s trial phase for Graft vs Host disease. It saved my husband from death resulting from GVHD – which was a 90% possibility before Jakafi because the other options did not work for him. Getting access to a trial medication like Jakafi is just the first hurdle. Next is insurance. Sometimes insurance covers the cost on the trial medications, but if they don’t you can look into Prescription Partnership, a resource to help with prescription costs: https://www.pparx.org/

7) Pyramid schemes will come out of the wood work offering you miracle cures: Go vegan! Only juice carrots for 3 months! Buy these leaves! Essential oils! No. No. No. Do I believe in supplementing treatment with these things? Sure! But even if someone miracle cured their cancer with only carrots, that is the exception and not the rule. There are too many cancers, too many that are aggressive, and our bodies and these cancers are complexly different. Please do not rely solely on “jacking your immune system” to heal you.

(the only pyramid scheme I’m interested in)

Do you still feel like something isn’t right? Send me an email, Instagram DM, smoke signal and I’ll do my best to help.

GIFS ABOUT STEM CELL TRANSPLANT

Posted on October 31, 2017November 1, 2017 by jessicarblackwell

WHEN FRIENDS SEE YOUR STOCK PILE OF DRUGS BUT YOU DON’T WANT TO BUM THEM OUT WITH THE REALITIES OF TRANSPLANT

WHEN YOU’VE ONLY BEEN AWAKE FOR 3 HOURS AND THE FATIGUE HITS

WHEN THE DOCTOR SENDS YOU HOME AFTER UPPING YOUR PREDNISONE DOSE

WHEN SOMEONE TRIES TO SELL YOU ESSENTIAL OILS TO HEAL GRAFT VS HOST DISEASE

WHEN YOU FIND OUT YOU’RE NOT ABSORBING AS MUCH PROTEIN AS YOU WERE PRE TRANSPLANT

WHEN YOU GET A SURPRISE CALL ABOUT PAST DUE MEDICAL BILLS

WHEN YOU’VE BEEN INDOORS WITH NO IMMUNE SYSTEM FOR WAY TOO MANY WEEKS STRAIGHT

WHEN YOU’RE FEELING FINE BUT HAVE A LOW GRADE FEVER AND HAVE TO GO TO THE ER TO BE ON THE SAFE SIDE

WHEN SOMEONE ASKS WHAT IT’S LIKE TO BE A CAREGIVER

WHEN YOU FIND OUT IT TAKES DAYS TO GET BIOPSY RESULTS BACK

Blood Work and Lab Results – CBCs and WTF does any of this mean?

Posted on September 10, 2017September 10, 2017 by jessicarblackwell

Quick disclaimer (and humble brag): I’ve been able to accurately “diagnose” a few things before the medical staff treating my husband. That being said, the only medical school in my repertoire is Google and the only accredited degree I hold is in the very closely related film & television arts.

Now that we have that out of the way, here’s why it’s important to understand lab results…

If you’re like me, you assume a lot about medicine. You probably assume doctors have access to a program where they can easily identify trends. They don’t. They look to see if anything’s in the out-of-normal range as they happen and if something is off (or trending in the wrong direction) but they don’t catch it, it can cause real problems. Being a proactive patient in this scenario can only benefit you.

I know this because Jeff had blood work that should’ve alerted his physician to his cancer back in March of 2015. His doctor noticed the high WBC (White Blood Cell counts) and noted that it likely signified a virus but did not catch his incredibly low HGB (Hemoglobin) which should have been a red flag for additional testing. That was enough reason for me to learn the meaning of every acronym and how they relate to each other.

Alright, enough explanation. Let’s run through the big ones. Don’t feel intimidated.

(me in June of 2015)

When a doctor orders lab work he will likely, first and foremost, order CBCs – the Complete Blood Count. I’ve found the below to be the most important parts of the CBCs:

WBC (White Blood Cells): a high white cell count can signify anything from an infection, to a virus, to inflammation, to cancer. If your white cell count is high, you can look at the results that follow the white cell count to get more of an idea of what is going on – the results I’m referring to are Lymphocytes, Neutrophils, Eosinophils. Each of those cell types have a different purpose when it comes to attacking things in the body that shouldn’t be there. I’m going to stop here on the high white blood cell counts so your eyes don’t glaze over.

A low white cell count leaves you to prone to infection. This normally occurs right after chemotherapy and that’s why, post chemo, Neupogen shots are given. Neupogen shots make sure your ‘good’ white cells replicate quickly so you aren’t compromised. These shots cause bone pain (because of the white cell count being forced to quickly grow in the bone marrow) and generally suck.

Hgb (Hemoglobin): Chemo can cause anemia aka low hemoglobin, and so can cancer. This seems like a good time to mention that the more you learn about lab results, the more you’ll realize that a single result can point you in a handful of different directions. If you suffer from anxiety, good luck.

A high hemoglobin can signify something called Polycythemia. Then again, it could be that you are dehydrated so that your lab results are just falsely high.

Platelet: Platelets prevent you from literally bleeding out. Without the ability of your blood to clot, you’re in big trouble. The normal platelet count (by MD Anderson standards) is 140-440. Jeff’s platelets like to hover around 40, which sounds insanely low, but a lot of patients don’t even have results of 10 and need replacements daily. Platelets are hard to come by and it can often take 3-4 donors to make a single bag of platelets. Now that you know this, you’ll hopefully feel inclined to donate platelets, which you can find out how to do here: Donate Platelets

Now for my absolute favorite…

LDH (Lactate Dehydrogenase): it’s a lab result with an identity crisis. It has no idea what it’s signifying, but it’s there and it’s gonna love watching you lose sleep at night. High LDH! What could it be? It could be the chemotherapy working, could be cancer growing, could be an impending heart attack, sepsis, a virus taking over, who knows! It simply signifies cells being destroyed and it’s the most ridiculous of them all.

Creatinine: Having creatinine be a little low doesn’t normally signify a huge problem, high creatinine tends to be a problem. The kidneys are under stress for some reason (like a blockage, or medication toxicity) and they’re going to start getting cranky. When they start getting cranky you have to find ways of removing some of the stress or they’ll eventually shut down, leading to kidney failure, dialysis, and eventually a transplant. eGFR is another way this is monitored, but it’s taken less seriously than creatinine.

eGFR: This monitors the filtration rate of the kidneys. You’ll watch these numbers slowly decline if the creatinine is high (not confusing at all, thanks!) but the difference with this result is that it takes other lab results into account. It should be monitored to better identify kidney stress, even when creatinine is in the normal limits.

STORY TIME!

The normal eGFR for Jeff was 185, but the normal population eGFR is around 107 (that’s by MD Anderson standards). So, when Jeff and I saw his eGFR hit 110 one day, we knew his kidneys were not happy. The doctors would have not caught this because he was still in normal range to them, but we’d been steadily tracking it. They quickly made some substitutions to solve the problem when realizing the decline was after taking a new, high toxicity medication.

Bilirubin, AST, and ALT: These are liver lab results. When they’re high, it could be anything from drug toxicity, to liver cancer, to Graft versus Host disease. When one organ is under too much stress, the rest usually follow. When Jeff’s kidneys were unable to handle the toxic burden of medications we often watched these numbers slowly creep up.

Protein: Gastrointestinal issues often cause low protein. When the intestinal walls thicken, they can’t absorb as much protein. The malnutrition caused by this can also have an affect on your electrolyte panel – sodium, potassium, calcium – you’ll likely need replacements via pill or IV.

Albumin: Low protein causes low albumin. It’s a problem because low albumin causes something known as ‘third spacing’ – that’s when fluids no longer hydrate your organs and actually sit in places like your feet. This is called nephrotic syndrome and can be extremely uncomfortable. There’s no cure except for to figure out the underlying problem and fixing that. Now you’re on the journey of trying to figure that out. Great.

Now that you know what is low or high in your lab results and your symptoms, you can take to Google (but ONLY MEDICAL PAPERS – NO WEBSITES). Part of the challenge is finding free medical papers. Some want payment. I find this ridiculous. Almost as ridiculous as learning how political medical papers are, with doctors fighting over who gets to be lead author on the research.

I plan to fight for all free medical information – but right now Jeff has to get over this GHVD, first things first.

You’ll quickly find that a lot of symptoms and/or lab results add up to be the same things. That’s why WebMD makes hypochondriacs.

But good doctors will listen to why you think symptoms are adding up to a certain diagnosis. Chances are, they’ll give you piece of mind as to why it’s not what you think it is – you know, because they spent years in medical school where they’ve had to learn all of the small details surrounding what makes up a particular diagnosis.

And try to keep in mind you don’t want to be the patient advocate that cries wolf to the point that no one takes you seriously (although I know first hand it’s undoubtedly difficult when you feel like you know what is suddenly wrong and it needs to be fixed immediately). Always check your sources, do your own research, trust your intuition, advocate, advocate, ADVOCATE.

But, please, with gentle persuasion.

Less GVHD, more HGTV (Day +216)

Posted on August 7, 2017August 7, 2017 by jessicarblackwell

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.

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

BUT AFTER WEANING OFF IMMUNE SUPPRESSANTS THEY CAN GET LIKE

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:

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Jeff was like, "I feel weird" and I was like NO SHIT I feel weird and it's not even happening to me. #SciFi #WhatYearIsIt #photopheresis #GVHD

A post shared by Jessica Blackwell (@jessicarblackwell) on Jul 26, 2017 at 2:01pm PDT

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.

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.

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

Posted on July 23, 2017July 23, 2017 by jessicarblackwell

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

Screen Shot 2017-07-22 at 5.37.07 PM.png

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.”

Wow.

Posted on July 10, 2017July 13, 2017 by jessicarblackwell

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#chemo had to meme it.

A post shared by Jessica Blackwell (@jessicarblackwell) on May 24, 2017 at 10:07pm PDT

More Gifs About My Husband’s Cancer

Posted on June 28, 2017June 28, 2017 by jessicarblackwell

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:

WEAR YOUR FACE MASK, BEN

Posted on June 28, 2017June 28, 2017 by jessicarblackwell

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

Posted on February 10, 2017February 10, 2017 by jessicarblackwell

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.

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

Posted on January 10, 2017January 16, 2017 by jessicarblackwell

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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!?

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.

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