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:

tumblr_o19f92ApgQ1r2igm4o2_500

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.

IMG_3085

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.

maxresdefault

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.

Screen Shot 2017-06-11 at 7.44.05 PM.png

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

IMG_3076

 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.

IMG_5416.JPG

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.

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

Follow my blog with Bloglovin

Before I had personal experience with chemo, movies and TV led me to believe that the nausea was the most traumatic part of it. Apart from losing your hair – but, wigs! Fun! Right, Samantha!?

Screen Shot 2017-01-09 at 5.35.51 PM.png

In reality, what Jeff experienced was a myriad of things. He refers to this cluster of uncomfortable side effects as a “hangover times ten”.

TYPES OF CHEMO

There are many different types of chemo and they all look different. The first chemo Jeff was given was Doxorubicin, which chemo patients call the red devil (thanks for giving it this super chill, non threatening nickname!) because it looks like bright red Kool Aid.

Screen Shot 2017-01-10 at 8.41.50 AM.png

Some chemotherapy drugs are clear. Some are given through an IV, and some require a patient to have a port or a picc line put in.

THE MEDICAL STAFF WILL LOOK TERRIFYING

Nothing rattles the nerves of a first time chemo patient like seeing the nursing staff bring over a chemo bag like it’s a scene in the movie Contagion. Everything is labeled hazardous to boot. The nurses handle so much chemo a day that they simple cannot be exposed at all to it, so they wear gloves, a gown, and a mask.

screen-shot-2017-01-09-at-5-32-03-pm

Chemo hasn’t advanced in a very long time, so if you can find any comfort in this, just know that the chemo you are about to receive has likely been used to cure many people since the 1950s.

NAUSEA

Jeff only had nausea once, on the first day of chemo, and that was because he hadn’t been prescribed a high enough dose of Zofran. Zofran got FDA approval in the 90s and it’s incredible. I also can’t hear the name without going, “ZOLTAN!”

Zofran completely gets rid of nausea for Jeff. That being said, all bodies are different. Some people respond better to a medication called Phenergan, or an anti nausea medication supplemented with something else like a sedative called Ativan. If something isn’t working for you, don’t be afraid to try things until you do. There’s no reason to be miserable. Even if you’re a masochist, it’s not worth spending the little energy you have (it’s needed for healing!) on tolerating a side effect.

WAIT FOR IT…

You don’t feel the effects of chemo immediately. I remember the first day of Jeff’s chemo. We watched the liquid move out of the bag, into the IV line, and slowly up into his port, watching as if it would hit his chest and he’d suddenly morph into a werewolf.

Screen Shot 2017-01-09 at 5.51.44 PM.png

The most he felt was brain freeze from all the ice he was eating to deter mouth sores. It was anticlimactic. A few days later we saw the effects. It always happens around the same time white cell counts bottom out.

OTHER COUNTS WILL DROP, TOO

Expect hemoglobin and platelet count to drop along with the white blood cell count. This is normal, but low hemoglobin and platelets require transfusion if they drop below a certain amount. Every hospital/doctor has a different number requiring transfusion, but for MD Anderson it’s Hemoglobin under 8.0 and platelet count under 20.

MOUTH SORES

These are THE WORST. If you’ve ever had a cut in your mouth or a canker sore, it’s like that but imagine about 70 of them in your mouth at one time. You can’t eat, so be prepared to have smoothies. And not with too much fruit because – guess what – fruit juice irritates the sores. FUN.

MUCOSITIS

I call mucositis mouth pain on cocaine. The mouth sores were bad during the initial chemo but Jeff didn’t have mucus production. After myeloablative chemo (the most intense chemo) Jeff required suction at his bedside. The bucket would fill almost daily.  It’s intense and does not subside until your white blood cell counts recover.

Clearing out mucus production is constantly like this:

And leaves you talking like Christian Bale as Batman for a couple of weeks after.

You hear a lot about chemo but not about the other medications that supplement the chemo. You may also have to take:

STEROIDS which cause HUNGER

Some chemos require steroids because of their T Cell repressing qualities. Steroids make you very emotional and hungry. Hangry or, as I call it, Chemotional.

cE7Oc1s.gif

When our doctor first gave my husband the steroids, I was the one he gave the warning to. “This could make your husband irrational. We’ve seen people throw things at their spouses.” His advice was basically to duck. Apart from eating an entire sleeve of cinnamon rolls at 6AM, Jeff never did anything completely irrational. He did get into an argument with someone he didn’t know on Facebook that I might have instigated circa Trump election. Jeff on steroids was mostly just like me on my period.

NEUPOGEN / NEULESTA which cause BONE PAIN

Once you’ve had chemo you’ll have an injection in your arm or stomach with a bone marrow stimulant. This will help your body quickly get new white cells in action. The quicker your white cells rise, the less likely you are to have an infection. It’s important to avoid infections at all costs. Also see: face masks below.

OPIOIDS which cause CONSTIPATION

All of the pain management drugs cause constipation, including a lot of anti nausea drugs. Chances are that if you’re having chemo you’re going to take something that causes constipation. Sure, it isn’t fun to talk to your doctor or anyone else about, but the consequences are serious. I talked to a stem cell doctor who lost three young male patients from bacteria introduced via enema. Medications used to counteract constipation (such as colace and miralax) do not have an IV form. If you have mucositis and can’t swallow, this leaves you vulnerable. Regularity is so important that you’ll go from someone who’s never peed with the door open to being like

PeTruI4.gif

PORT ISSUES

Ports often get tangled or kinked inside the body. Something as simple as a cough can coil the line inside the chest. Having to go in and have the port fixed is nerve wrecking, but it’s a common occurrence I’ve found in patients. Having procedures done to correct the port might happen a fair amount during your treatment. Jeff had a port inserted and then about a month later doctors had to do a procedure where they went up through the groin to pull a kink down. Then, after additional issues, the port had to be removed and another one placed on the other side of his chest. Very scary when you’re dealing with low blood counts because, again, risk of infection.

FACE MASKS

Screen Shot 2017-01-10 at 7.25.27 AM.png

(not this kind)

Infections can be deadly. No night out to dinner or the movies is worth risking organ failure. That’s why, even when Jeff’s white cell counts were normal, he’d wear a face mask out at all times. We also took extra precaution and kept our distance from people who were around lots of other people. Children were no-nos. Think about all of the other children a kid comes in contact with at school and then those germs/bacteria are brought into your home at the end of the day. What I’m saying is – bathe your kids in Purell.

Don’t risk shaking hands. Remember to disinfect your cell phone. Be nice to people…from a distance.

Caregiving 101

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.

fvxngl4vurel

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.

c846cf8790834b156d1fd3ba3828ae13.jpg

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.

Screen Shot 2017-01-03 at 3.43.38 PM.png

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.

img_2830

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.

Screen Shot 2017-01-03 at 4.01.57 PM.png

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.

Screen Shot 2017-01-03 at 4.02.10 PM.png

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.

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, 104.5 degree fevers, and 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.