Ask Me About My Husband’s Cancer

Sometime back in 2016 I found myself reading posts like this one. I was searching for information but, blog after blog, I’d stumble across the feared update: their person didn’t make it. This blog is no exception. My husband passed away on March 17th, 2019, while waiting for a liver transplant.

It’s important that those of you reading this and looking for answers understand – this is not your outcome. Ours does not foreshadow yours, even if you have the same cancer by name. Every cancer and every body is genetically very different. It’s always worth giving your all in the fight to live.

Screen Shot 2019-07-22 at 12.13.16 AM.png

I have a constant need for information. With cancer, it was all so that we could make the best decisions about Jeff’s treatment. I didn’t think there would be any decisions weighing on me if it ever came to Jeff’s passing. I wouldn’t even let it enter my mind. But now I know that Jeff’s passing only happened the way it did because I’d become friends with so many others who had lost their loved ones. They’d shared their experiences with me. Because of them, I knew what to fight for when the time came. I’m so grateful for them. I’m grateful that Jeff and I were able to have the best possible final moments together in what I would otherwise call the worst time of my life.

If you’d rather not think about the worst case scenario, I understand, but if you would rather know, I’m going to share some of the things that prepared me. The transition is hard enough without wishes and regrets.

Screen Shot 2019-07-22 at 12.41.03 AM.png

Chances are, you’ll know when the time is coming. Jeff entered the ICU on February 27th and I was told that he wouldn’t be alive through the weekend. I instinctively knew that wasn’t true. He was with me until March 17th.

If you’ve been with someone through treatment you’ll probably have a hunch. I’ve talked to others who have had similar intuition. This intuition can give you the time to fight for the really important things, like when to stay and ask for certain liberties (which I’ll get to in a minute).

Jeff needed to be intubated the following day but the staff were casual about it. I was told he’d likely be off intubation and talking again by the following day but I didn’t know how unlikely that actually was. I tell you this because there’s the possibility you’ll have a last moment to communicate and you won’t realize it. Our last words were “I love you” before he was sedated. I had no idea they would be the last words he’d ever speak. A single moment can end up being the most significant.

Screen Shot 2019-07-22 at 12.08.20 AM.png

Over the next few weeks, Jeff was essentially in a comatose state but open eyed. This same thing happened to other friends who have passed from cancer. Efforts to communicate go in and out with their eye movements and hand squeezing. No one knows how well people in this state are able to comprehend, but I had signals from Jeff that he was listening and aware. Talk to your person. Play their favorite music. Give them as much contact as you can. Now is a good time to mention: nurses will probably ask that you don’t sleep in the room but you can bypass this by sleeping sitting up in the same chair that would be in there regardless. You can find creative ways to sleep so that you can stay. Sleeping in the lounge does not give you good rest anyway (see pictured below). Everyone will try to get you to leave the hospital and rest, but I look back and I’m glad I stayed every moment that I could.

Screen Shot 2019-07-22 at 12.43.07 AM.png

Medical staff will likely want to do testing while in the ICU to try to resuscitate. A lot of tests are invasive and painful, and a lot of times your person can’t say they’re in pain. Sometimes you can see it on their faces. Pain medication can lower blood pressure (in other words, destabilize the body) so they don’t like to use it, but there are medications like Versed you can ask for. They’re thinking about resuscitating and not comfort, so it’s always good for the caregiver to keep being aware of how comfortable they look.

Cardioversion / defibrillation is where they shock your heart back into normal rhythm. Jeff had this twice. It’s not a rare occurrence in the ICU and absolutely doesn’t mean death but it is frightening to watch. If you’re in the ICU for any extended period of time you’re going to see your fair share of cardioversion and, unfortunately, death. In the 3 weeks we were in the ICU I happened to see 4 people pass. There isn’t a way to emotionally prepare for it, but you can expect it.

Screen Shot 2019-07-22 at 12.46.22 AM                                            (note found in the ICU guest bathroom)

Be nice to the nurses. They have the ability save lives just as much as the doctors. One of Jeff’s nurses brought his body temperature from 92 degrees to normal by engineering her own way to warm dialysis bags. This gave us extra time to try to resuscitate him, and for new doctors to make rounds. Changing doctors can be a good thing. We went from having one doctor who said he refused to do cardioversion if Jeff required it, to another doctor who constantly read papers to come up with new ideas on how to recover his blood flow.

And finally: fighting for the really important things. Jeff’s blood pressure steadily began dropping on the morning of the 17th. I knew it would only be a matter of hours. I asked the nurses to help move him closer to one side of the bed so that I could lay with him but, because of various infections acquired in the hospital, they didn’t want me to have that much contact with him. The hospital takes this sort of thing seriously but I refused to take no for an answer. You have to push back. They’re doing their jobs but this is something that will be with you for the rest of your life and doing what’s right in a loved one’s final moments is more important than any system. If you want something specific like this, your best bet is to find someone on staff to have your back. I was lucky to have a doctor on my side. He let me lay next to my husband so he didn’t go through it alone.

Screen Shot 2019-07-22 at 12.07.20 AM.png

I can’t reiterate how much the final moments can impact you. Try to go easy on yourself. Start therapy as soon as you can, try to find a grief specific therapist. There are groups like Our House where you can meet other spouses / siblings in your age group (I find this to be important) in similar situations. If an in-person group isn’t really your thing, my friend Nora started The Hot Young Widows Club where you can ask anything and everything online.

But even with various resources and incredible friends and family, grief can sometimes feel like an island. That’s because cancer has a way of deepening your love before taking them from you. Cancer makes sure you see someone at their very core and then, when they’re gone, the grief is what is left. At Jeff’s celebration I talked about how we fit 30 years into the last 3. I talked about how most couples would be lucky to get the same amount of time we did in a whole lifetime, but the reality is I was lucky to find Jeff at all.

Screen Shot 2019-07-22 at 12.09.51 AM.png

He gave me more love than most people receive in a lifetime. I’ll hold on to that forever.

IMG_3383.GIF

No matter how long it’s been since my last post, please don’t hesitate to reach out to me. If anything that Jeff and I went through can be helpful to you, I’m happy to talk about it. I can add it to the long list of beautiful reasons we were given this life together. So please keep asking me. Ask me about my husband’s cancer. Ask me about loss. Ask me about life. JessicaRBlackwell@gmail.com

It’s Called Medical ‘Practice’ for a Reason

On May 27th, 2016 my husband and I eloped. Three days later, on the last day of our honeymooon in Mexico, we were transported to a small clinic where he underwent a life saving splenectomy without blood for 4 hours. Since then, he’s also survived: a fatal cancer misdiagnosis, toxic chemotherapy for that fatal cancer, a pulmonary embolism, an open liver biopsy, an allogeneic stem cell transplant, a week in the ICU, graft vs. host disease, a month of 104.5 degree fevers, six additional aggressive chemotherapies for his actual cancer – a cancer with less than 20 cases in medical history – Hepatosplenic T Cell Lymphoma, Alpha Beta. The worst fraternity ever. And this all came after our plane’s second engine failed on our medical flight back to Los Angeles.

 

img_0340-1
Spoiler alert: we made it.

 

I was a huge baby before Jeff’s spleen decided it wanted out of our marriage. I was squeamish. I hated hospitals. I’d cry while giving blood.

Screen Shot 2017-01-10 at 8.43.41 AM.png

Now that my husband’s life was on the line, I found myself unable to look away. Because I had to be active in his care, I saw things that could literally save people’s lives if they only knew about them.

The biggest thing I’ve learned over the past seven months is that people don’t normally talk to each other about their treatment. The second biggest thing I’ve learned is that medicine is not a science. The medical industry is more like:

tumblr_naimidteh61tbiuqvo3_400

 

than it’s like this episode of Vice:

My husband was misdiagnosed at a Top 5 cancer hospital. We were told with 99% certainty that he would die within months. Months later, when they discovered they were wrong, they didn’t react like it was out of the norm. When we got to MD Anderson, they told us what we weren’t surprised to hear: 35% of cancers are misdiagnosed.

When my husband’s cancer didn’t fit his diagnosis of Angiosarcoma, I read every medical paper I could find, which was difficult because most sites make you pay for them. I began looking for people living with the cancer – through Facebook Groups, or searching Go Fund Me and then finding their families online – to ask their personal experience. I became the type of person who deserved a detective’s license or maybe a restraining order. Through connecting with people, I realized my husband’s cancer wasn’t acting like their cancers. It was acting like a blood cancer, which was now spreading faster because the chemo he was on was for a sarcoma. The oncologists labeled his issues “tumor related”. They wanted him to continue the treatment I knew would kill him. At that moment, I stopped putting all of my trust into the doctors and took as much control as I could into my own hands. A specialist finally helped push for his re-diagnosis, and Jeff is now heading into an allogenic stem cell transplant.

I’m hoping the things I’ve learned along the way help you gear up for you or your loved one’s treatment. Cancer is surprise enough, so spare yourself more surprises! Reach out to me personally for anything you’re curious about that doesn’t already exist on the site. I’ve set up links on the side of this page to help navigate to the answers you’re looking for.

 

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

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!

swearing-bloody.gif

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!

rs_500x282-160824155427-tumblr_ndo3fjrKIZ1qcjdp7o1_500_1.gif

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.

tumblr_oloq80HvOF1qattp2o1_500.gif

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.

giphy (2).gif

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…

giphy (1).gif

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.

tenor

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/

anigif_enhanced-26271-1427924972-2

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.

giphy.gif(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

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

tumblr_nqz6rj6kug1sljwrko1_400


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

giphy (1)


WHEN THE DOCTOR SENDS YOU HOME AFTER UPPING YOUR PREDNISONE DOSE

gremlin


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

4e47d-dr.gif


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

15.gif


WHEN YOU GET A SURPRISE CALL ABOUT PAST DUE MEDICAL BILLS

tumblr_n25uznhvjG1qblevxo1_250


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

swanson.gif


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

tenor


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

tenor (1).gif


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

tenor (2).gif

 

Two Months In, One Out, Right Back In

View this post on Instagram

🙄😷

A post shared by Jessica Blackwell (@jessicarblackwell) on

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

swaa75

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.

figure-it-out-o

 

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.

tenor (1)

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.

tenor

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.

MinorCluelessIndigowingedparrot-max-1mbBut, please, with gentle persuasion.

 

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:

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

tenor


FATIGUE

qxaGD


NAUSEA 

HOy83lK

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.

IMG_8338

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

 

Less GVHD, more HGTV (Day +216)

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

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

giphy

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

63595324720045021217558334_cool-did-we-just-become-best-friends-gif-777

 

BUT AFTER WEANING OFF IMMUNE SUPPRESSANTS THEY CAN GET LIKE

lSKdqIQ

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

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

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

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

Enter Jakafi.

Screen Shot 2017-08-04 at 12.42.54 PM.png

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.

NGAgZ.gif

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.