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.

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

View this post on Instagram

#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 )

The ICU

Posted on June 12, 2017June 12, 2017 by jessicarblackwell

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.

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.

Caregiving 101

Posted on January 4, 2017January 4, 2017 by jessicarblackwell

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.

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