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.

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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.

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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.

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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.

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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.

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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.

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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.

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

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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

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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!

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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!

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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.

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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.

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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…

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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.

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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/

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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.

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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

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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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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

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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

 

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

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Back in February I had to call 911 when Jeff was having chest pains. I went downstairs to let the EMT’s in and they thought I was the landlord because I was super chill opening the door for them like, “just bring that stretcher right in here.”

The ICU

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:

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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.

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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.

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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.

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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

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 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.

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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.