GIFS ABOUT STEM CELL TRANSPLANT

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

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

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WHEN THE DOCTOR SENDS YOU HOME AFTER UPPING YOUR PREDNISONE DOSE

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

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

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WHEN YOU GET A SURPRISE CALL ABOUT PAST DUE MEDICAL BILLS

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

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

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

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

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Two Months In, One Out, Right Back In

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

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.

9a2874ce3b265e73a051855167fa2391(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

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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.

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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.

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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.

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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.

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Cancer Doesn’t Evacuate: MD Anderson during Hurricane Harvey

I’d like to start this story off with some good news. The flooding around the hospital finally cleared and I was able to reunite my husband and our dog. You can see their excitement in this video:

Sound on. 🔊 Look how excited Auryn is to see Jeff. 😭 @brue9 #cancer #houston #dogsofinstagram @leukemialymphomasociety

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My husband and I were on our 50th straight night in the hospital when we heard that Hurricane Harvey, a category 4 hurricane, was barreling towards us in Houston – one of the most flood prone cities in the United States and home of the biggest Medical Center in the world. I guess fighting an extremely rare cancer and nearly going down in an airplane within the last year wasn’t dramatic enough (Lifetime Network, hit me up).

This hurricane felt way too ‘on the nose’. A giant metaphor. Symbolically, a hurricane is a lot like cancer. When you’re told about it, you’re not sure how much damage is coming and you can try to prepare yourself for the overall experience, but only when you’re in it do you finally see all the hurdles that make up the bigger picture. Like…

PAIN

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FATIGUE

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NAUSEA 

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For Houston, the flooding is what truly made Hurricane Harvey terrible. Jeff’s Graft Vs. Host Disease, what we’re inpatient for now, is just like the flooding in that it’s the dangerous after effect that lingers. I’m sure you’ve seen a ton of media coverage on the floods, but here’s some pictures of what the outside and inside of MD Anderson looked like for us on day #1:

Yes, that’s a car flooded and abandoned in front of the hospital. One of many. Some of them positioned as if they were turning into the employee parking lot. 

I spent most of the time we were on lockdown scrolling through Facebook and there were a surprising amount of people who thought those who didn’t evacuate were “stupid” and deserved no help. That was when I learned that nothing magnifies rage like cabin fever.

IMG_8269I’m making Jeff a shirt that says’I Survived Cancer and all I got was this Hurricane Harvey T Storm’.

So let me explain something about evacuations from the point of view of being in this cancer hospital…

If evacuating isn’t mandatory, that means businesses can stay open. Which means hospitals stay open. And, just to reiterate, this medical center is the biggest in the world. That’s a lot of employees (around 106,000) keeping A LOT of people alive.

HERE ARE SOME REASONS WHY STAFF DIDN’T EVACUATE: They were told to come into work and their coworkers and patients were counting on them.

Our night nurse worked 17 hours straight that first night. Nurses normally work on 12 hour shifts and I can only imagine how critical thinking holds up past 12 hours, much less 17. A simple mix up of medications or forgetting to flush a cvc line could mean someone’s life.

The flooding was so bad that nurses were sleeping in shifts of 4 hours in their offices and covering for each other, all while hoping their families and homes were surviving the storm. Eventually water had to be released from reservoirs, threatening even more homes that weren’t originally at risk. One of our nurses was sure it’d flood her house but all she could do was continue her shift and wait and see.

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By the second day, a nurse arrived to work in the flooding. Did she kayak in? It was still badly flooded and constantly raining. All of the other nurses on the transplant floor cried when they saw her (I assume partially because they were exhausted and knew she’d provide some relief, but also because they knew how risky it was to try to make it in). Emotions were as high as the water. All sorts of lives were on the line. Doctors couldn’t make it in and were having to review things from home and call in orders.

The hospital was waiting for blood products to be flown in. Transplants could reject without them. On top of that, they were out of coffee. The staff were sleeping in 4 hour shifts on floors with NO COFFEE. It’s amazing how little coffee was available after one single day of lock down. I’m letting you know because if you’re ever in a hospital during a storm, bring coffee to barter with.

IMG_8262Stock up on your bartering foods early. This is the selection Target had to offer just 3 days before the storm. Apologies to my mother in law. 

HERE ARE SOME REASONS WHY OUTPATIENTS DIDN’T EVACUATE: They could need daily infusions that MD Anderson provides – blood products, platelets, other infusions that literally keep them alive day to day. Do you know how difficult it is to get complete records sent to another hospital while they’re prepping for a hurricane? Do you know how difficult it is to get records sent to another hospital on an average day? Many people travel to Houston for special treatment because it’s one of the few places that handle rare diseases. It’s financially draining to do this, even without factoring in an evacuation.

HERE ARE SOME REASONS WHY OTHER PEOPLE DIDN’T EVACUATE: Some people didn’t evacuate because they don’t have the means. Or maybe because they thought they’d go over to Joel Osteens church and be taken care of there?

I dunno, I think those cover A LOT of people.

As much as I’ve wanted to be out of the hospital and back in the comfort of our apartment over the last couple of months, I feel grateful that we were in MD Anderson during the hurricane. I knew that Jeff was being taken care of. If we had been home and something happened to him, who knows if I’d been able to get him help. But I do know that with the incredible care we’ve been given at MD Anderson over the past year, we would have also chosen to stay. It’s something I think a lot of people outside of the Texas Medical Center fail to think about.


The people of Houston deserve all of the help you can give. Here are a few links to start, and the NY Times link to some additional resources:

The South Texas Blood and Tissue Center is reporting a critical shortage, and has extended hours at all of its San Antonio-area donor rooms. To donate, call 210-731-5590 or visit their website for more information.

Carter BloodCare covers hospitals in North, Central and East Texas. To donate, call 877-571-1000 or text DONATE4LIFE to 444-999.

To help animals suffering from the disaster, visit the Houston Humane Society or the San Antonio Humane Society. The Houston Society for the Prevention of Cruelty to Animals has set up an animal emergency response hotline (713-861-3010) and is accepting donations on its website.

The United Way of Greater Houston flood relief fund will be used to help with immediate needs as well as long-term services like minor home repair. Visit their website to donate or text UWFLOOD to 41444.

Where to Donate to Harvey Victims

 

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 )