Angiosarcoma – Ask Me About My Husband's Cancer

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

Posted on January 17, 2018January 25, 2018 by jessicarblackwell

If you’ve found this via Google, chances are you’re just like me in 2016 – you’re “terror skimming” for facts. I don’t want to lose you, so I’ll get right to it. Below are 5 absolute necessary things needed to avoid going down the wrong cancer treatment road (I’ll save my reasons why / fun time gifs for the expanded portion below). STRAP IN, HERE WE GO:

1) Get a hard copy of your pathology report. Read it.
2) Ask your oncologist to send off a copy of the pathologist report and slides for a second opinion at a larger cancer hospital.
3) Look up clinical trials to see if you’ll have better odds than the standard treatment you’re offered. This is because…
4) Hospitals cannot tell you if there’s a better treatment offered with better odds elsewhere. Legally they cannot inform you/refer you out so they’ll stick you on their standard of care even if it leads to death.
5) Chemotherapy treatment also differs from hospital to hospital. The chemo regimen most effective for your specific cancer might only be available at certain hospitals.

Above all else, those 5 things are the most important. And you’ve made it here, so you’ve read them all!

You might’ve had questions while reading the top 5 like, “Why?” so now I’ll expand and throw in some bonuses:

1) Ask for your pathology records. Physically read the pathologist’s details. I say this from personal experience. I was told my husband’s cancer was 99% angiosarcoma, yet when I asked for pathology records nearly 3 weeks later (I’ve learned my lesson) the report said “precludes diagnosis”. They weren’t sure at all, but by this point he’d already received 2 cycles of heart toxic chemo for a cancer he never had. Get your eyes on those records!

2) Get a second opinion from a pathologist at a major cancer hospital. You can ask your oncologist to send the biopsy slides to a more experienced pathologist at MD Anderson or Memorial Sloane Kettering. This is free to you. It’s possible they’ll come back with another opinion, like it’s a different cancer or a different staging (which can require a different treatment). If your treatment feels extreme, get a second oncologist opinion.

NOW THAT YOU KNOW YOUR DIAGNOSIS…

Find a cancer specialist. They might have access to clinical trials for your specific cancer. Trials are free to you. On the subject of trials…

3) You can find them here: https://clinicaltrials.gov/
Trials are only offered through certain clinics and institutions so where you’re being treated possibly won’t ever even mention them. Facebook groups for certain cancers are the best place to hear about these trials and see first hand how they’re effective.

4) Many hospitals cannot refer you out, even if they know you have better odds on a treatment that they do not carry. For example, a UC hospital will put you on chemotherapy that only has a 4% survival rate and NEVER tell you there is a trial with an over 50% survival rate offered a 5 block walk away. Cancer patients can be worth millions of dollars to hospitals and they do not want to lose you. Many people feel that by getting a second opinion that they are betraying their doctors. It’s a matter of life and death so don’t be beholden to…

5) Even hospital to hospital, the chemotherapy regimens differ. For example, MD Anderson is the only place that offers HYPER CVAD (because they came up with it). Hyper CVAD has shown the best outcomes for non relapse remission in the cancer Hepatosplenic T Cell Lymphoma (you can find this info in medical paper case studies). This is what led my husband and I from Los Angeles to Houston. If Hyper CVAD performed the best, we’d see if insurance covered and then move to have access to it.

6) If you’re going through a cancer treatment like a stem cell transplant, you may have to deal with many side effects that can be life threatening. These life threatening side effects often have very few treatments (like steroids). Major cancer hospitals will also have access to trial medications for those side effects that other hospitals won’t have access to, like Jakafi. Jakafi is a medication that is still in it’s trial phase for Graft vs Host disease. It saved my husband from death resulting from GVHD – which was a 90% possibility before Jakafi because the other options did not work for him. Getting access to a trial medication like Jakafi is just the first hurdle. Next is insurance. Sometimes insurance covers the cost on the trial medications, but if they don’t you can look into Prescription Partnership, a resource to help with prescription costs: https://www.pparx.org/

7) Pyramid schemes will come out of the wood work offering you miracle cures: Go vegan! Only juice carrots for 3 months! Buy these leaves! Essential oils! No. No. No. Do I believe in supplementing treatment with these things? Sure! But even if someone miracle cured their cancer with only carrots, that is the exception and not the rule. There are too many cancers, too many that are aggressive, and our bodies and these cancers are complexly different. Please do not rely solely on “jacking your immune system” to heal you.

(the only pyramid scheme I’m interested in)

Do you still feel like something isn’t right? Send me an email, Instagram DM, smoke signal and I’ll do my best to help.

The ICU

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

There’s only one thing people want to talk about less than cancer and that’s the ICU. Shortly after my last blog post in February, my husband ended up there. I always thought being sent to the ICU was the “beginning of the end”, but I was wrong. The Intensive Care Unit saved Jeff’s life. Now I want to sing their praises. Literally, with ‘Private Eyes’.

“I.C.U. and you see me… They’re watching you.” How comforting! They’re watching out for you. So closely.

Let me back up and tell you how we got there.

Something no one warns you of is how, post chemo, your veins can get a little…leaky. I don’t want to be too graphic (novel) here but did you see the first X Men movie? Do you remember what Magneto did to Senator Kelly? Do you know how much I hate myself for using this reference? Senator Kelly went from 70-ish% water to 100% water and that was the end of him.

Chemo can cause fluids to go to places they aren’t supposed to go. Sometimes the fluid will cause your legs and feet to swell. It can also end up somewhere dangerous, like in your lungs. Sometimes the water will go straight past your kidneys and your body will believe you’re dehydrated, causing you to drink more water. The cycle continues.

This is what happened to Jeff. He hadn’t been eating well post transplant yet he also hadn’t lost any weight for weeks which was confusing. We didn’t know he was carrying around 20 pounds of water weight around his organs. They warn you that transplant patients can lose or gain weight because of changes in metabolism, so we chalked it up to that. It’s an incredibly insidious thing. More insidious than the amount of Insidious sequels that exist (give it a rest Hollywood). Even now, with Jeff no longer retaining fluid and eating enough to feed a family of four, he’s still losing weight. Most of our conversations are like this now:

So, one morning Jeff wakes me up with chest pain that’s a 5 out of 10 and it quickly progresses to an 8 out of 10 and I call 911. When we get to MD Anderson they do some scans and his lungs are full of fluid. They do a thoracentesis, which is just a Harry-Potter-mythical-creature-sounding word that means they took the fluid out of his lungs. They did this by – how do I explain this technically – punching a hole in his back and putting a suction tube in it. They got a couple of liters (!!) out and he was able to breathe without the chest pressure… temporarily.

That’s when his lab results showed abnormal kidney function. It suddenly plummeted. Our doctor came in to tell us he’d like to send us to the ICU but that it was “precautionary” – not that he needed it immediately, but better safe than sorry. I remember thinking, “this is what they tell everyone I bet”. I was numb. Jeff wasn’t protesting. I knew that was a bad sign.

Let me be honest – the walk to the ICU feels BLEAK. It’s always tucked away from the higher traffic floors. There’s even a special elevator to get to them. There are less windows, if any. The rooms are small and cramped with all sorts of machines. There’s only a recliner, unlike on the regular floors there’s at least a bench to sleep on. I’m actually still confused by this, considering the ICU seems like the place you’d be much more likely stay overnight as a caretaker.

As a side note: I am a terrible sleeper and I can’t sleep unless I’m completely flat. In the ICU I ended up shoving my suitcase in between the recliner portion and the ottoman so I could lay down. It worked perfectly. I highly recommend.

It was around midnight when they transferred us and I couldn’t help but pay attention to every single detail. Patients hooked up to breathing machines, unable to move. The doctor asked me to go to a waiting room while Jeff had an arterial blood pressure line placed in his wrist. It seemed painful and he seemed so out of it (they wouldn’t give him pain medication for fear his blood pressure would get dangerously low). I was so worried that I lasted in the waiting room for about 10 minutes before I was right back outside of his room. He could look out at me through the glass doors while they did the procedure, but I knew I was blurry to him without his glasses on. I just kept making a heart with my hands at him like I was in a stupid Taylor Swift music video.

It was all I could do and I LOST IT. I moved around the corner where Jeff couldn’t see my blurry figure and collapsed on the floor. His nurse happened to just be coming out of the room to check on the dialysis machine when he saw me. He stopped, knelt down and said, “Everything is going to be okay”. He got right back up, helped me into the room, and then assisted another nurse in lining up the 100 or so clear bags needed for the dialysis machine (I wish I could explain what these were for, but I have no idea. Still today I’m convinced dialysis machines run on magic).

I found the nurses in the ICU to be the most empathetic, strong, tactful people in the hospital. They were always aware, walking a fine line with their interactions: not too jovial because the place is a constant reminder that people die, but also not despondent because people are trying to cling to any trace of hope. This just a small layer on top of their many daily actions that make a difference between life and death.

I don’t know how much time I spent thinking about the lives of ICU nurses. It’s amazing what the brain does when simultaneously in trauma and void of stimuli. I don’t even remember Jeff looking as sick as he did at the time. I was like the Shallow Hal of health. I’m pretty sure this was my brain’s way of protecting itself.

Jeff remembers very little of any of this. I had spent most of my time worried about the amount of pain he was in to later find out that his brain was also protecting him. The extreme stress on his mind and body took him to a dream like state where all he remembers is thinking he was on a train with me.

Over the next two weeks Jeff had:

a groin catheter placed for dialysis
a drain placed in his heart for pericarditis
his picc line replaced
an endoscopy and biopsy to check for GVHD
around the clock breathing treatments

I made a lot of Top Gun references. It was my excuse to call him Goose.

After his kidneys normalized, we were transferred back to the transplant floor where we spent another two weeks. We were discharged from the hospital in mid March after a full recovery. What transpired was something known as Multisystem Organ Failure and when it happens after transplant it is, more often than not, the cause of mortality. We’d been on the lookout for something like sepsis, not something as simple as excess fluid. We now know how important it is to carefully monitor fluid intake and output after chemo, but especially after myeloablative conditioning.

Jeff and I celebrated with a big ceremony on May 13th – it was the goal line we’d set at the start of transplant. Because of MD Anderson’s ICU team’s care, we made it. We are day +160 post transplant.

THIS IS +40: Life After Allogeneic Stem Cell Transplant

Posted on February 10, 2017February 10, 2017 by jessicarblackwell

My husband has reached day +40 after allogeneic stem cell transplant. We’ve spent almost the entire last 2 months in the hospital and now we finally get to go home! Time to taste that sweet, sweet freedom.

WELCOME TO OUR NEW SCHEDULE

8:00am – I walk the dog and make some coffee that tastes like 40% creamer and 60% George Michael’s 1990 hit FREEDOM.

8:30am – I administer my husband’s first medication, Cellcept (to prevent Graft Versus Host Disease), which has to be taken on an empty stomach. I also wait an hour to eat breakfast because I’m not a monster. My husband’s body is hurting and he can barely walk thanks to the conditioning chemo he had weeks and weeks ago, so I run him a bath. Other than hard drugs equivalent to heroin, this is the only thing that seems to help.

9:00am – I feed the dog. I get the first “What’s the update???!!??” text of the day. I throw my phone in the trash. I help Jeff get out of the bath since he’s on Lovenox blood thinners so if he fell thanks to the neuropathy and hit his head, he’d die. Baths are super stressful now. Speaking of Lovenox, time for the first Lovenox injection of the day! And breakfast. And then more pills…

10:00am – breakfast is finished. Time for the pills that need to be taken on a full stomach: Gabapentin (for his nerve pain), Protonix, Tacrolimus (both of these are drugs to prevent GVHD), Ibuprofen, and CMV med infusion (to prevent a virus rearing it’s ugly head). I have to wear 2 pairs of gloves when giving him the CMV meds because it absolutely CANNOT touch my skin, even though I am injecting it into his body. I know they are very serious about this because I had to take a long class on how to do it properly and the meds are stored in a bright yellow bag marked CHEMO that is currently in my fridge surrounded by all the foods I’ll eventually digest. This seems super safe. And CRAAAAP and I was supposed to take the CMV meds OUT OF THE FRIDGE 2-4 HOURS AGO to give it time to reach room temp. I take it out of the fridge. I’ll just have to do the CMV infusion at the hospital. We have daily 5 hour outpatient infusion appointments so Jeff can get the rest of the meds they don’t trust me with, even when double gloving it.

(basically me and Jeff twice a day)

10:30am – I walk the dog again and shove an oatmeal cream pie into my stupid face.

10:50am – I can hear our dog Yelp from inside our apartment as Jeff shuffles down our apartment complex’s hallway. It’s the longest hall of all time to get to our parking garage. Why didn’t I think about this when we moved in!? Where can I steal a wheelchair? I’ve decided that next time I’ll roll him down to the car in our computer chair.

11:15am – We pull into MD Anderson and the closest parking garage is FULL. We’ll be late for our appointments if we spend 20 minutes looking for parking so we valet it and grab a super convenient (and pink) wheelchair. Also it’s Wednesday, and on Wednesdays we wear pink. Can’t wait to get home after this, maybe I’ll relax and watch Mean Girls!

11:30am – We make it just in time for the 11:30am blood draw appointment. We check in on the computer and wait to be called.

11:45pm – My husband’s blood is drawn. They realize one of his PICC lines is clogged. He’s had issues with blood clots before so after our infusion appointment, we’ll need to go see the IV team.

12:00pm – I push Jeff’s wheelchair up to the 10th floor to wait for our infusion appointment. The lab is behind today, so Jeff falls asleep in his chair as I grab a grande Caramel Machiatto for my stupid face.

(when I see this I think, Tuffy the Satire Slayer)

1:00pm – I’ve finished my coffee and I’m looking at memes on my phone like a 12 year old boy when we’re called back. Jeff’s vitals are taken, his heart rate is better than it’s been in a week. I feel a sense of victory, like I’m somehow responsible. We’re led into our own room for infusion time.

1:20pm – Jeff settles into bed and I take my seat in what has the comfort level of a high school homeroom class chair. His lab work print out is brought in. His hemoglobin is on the upswing. Jeff looks GREAT on paper but unfortunately still feels like crap in real life. I take out my laptop and check my emails before realizing I forgot a prescription that needs to be picked up at the pharmacy. Feeling super lucky today because the pharmacy just also happens to be on the 10th floor! I love that because this place is huge and I’m ready to be lazy.

1:45pm – I’m waiting at the pharmacy. Turns out his preventative anti fungal is NINE THOUSAND DOLLARS. That’s right, $9,000.00. Even with running Jeff’s Blue Shield insurance it would cost hundreds and hundreds of dollars for a month supply. I’m given a coupon to use with it and, once they can get them to approve it, I’ll have to pay only $100. I listen to an elderly woman next to me be told her insurance doesn’t cover a lot of her meds and that her total is $22,000. Fired up on espresso and rage, I start to understand the concept of suicide bombings.

2:45pm – After nearly an hour wait for pharmacists to talk to Blue Shield (which I am v grateful for), I have the 2008 Toyota Prius priced prescription in hand and I’m making my way back to my husband’s infusion room.

3:00pm – My husband has the IV fluids, magnesium, and an antibiotic finishing up and now they hook up the last antibiotic. I give him his mid-afternoon pills: Ibuprofen round #2 and Cellcept on an empty stomach round #2. I ask about hooking up with CMV infusion. They make me do it because they’re not allowed to touch it. I’m basically a nurse now. The CMV meds make Jeff nauseous so I give him a Zofran. #ZOLTAN

4:15pm – Now that the daily infusion is complete, we make our way over to the IV team to have his clogged PICC line looked at. I hope they can get it unblocked because he’s had a PICC line or port in every part of his body and the only place left is to put an IV in his groin. I saw a mere diagram drawing of this groin catheter situation in a catheter class and nearly passed out.

5:20pm – It’s freedom o’clock. Can’t wait to get home and watch some Forensic Files. I wheel Jeff back down to MD Anderson’s first floor and pay $15 for valet. The wait time is 20 minutes. We wait for what feels like an eternity. Every time someone coughs I think about how Jeff will eventually succumb to pneumonia because of this very moment. I’m not in a great place. Maybe the reason I watch Forensic Files because life is unfair and hard but at least I’m not getting murdered??

5:45pm – Our car pulls up and I tip the valet 2 bucks. They’re always super nice and I don’t think they get tipped often. Honestly, though, people with cancer are paying for $22,000 for a measly pocket full of life tic tacs, so I get it.

6:00pm – We shuffle back to our apartment and our dog loses her mind with excitement. She pees a little bit on the floor, which is unfortunate because we have carpeting. I’ll have to steam that later. I take her outside before there’s more than just pee on the carpet. It’s hard to be mad at someone who is so excited to see you that she pees a little bit. I go back upstairs to steam the carpet.

(throwback to a pre stem cell nap)

6:30pm – I steamed that section of the carpet with antibacterial because, if you weren’t aware, my husband has cancer. No laundry today because I did it yesterday. Go me. I’m basically a 1950’s housewife. And a nurse. Except I forgot about dinner which is rapidly approaching and, unlike a 1950’s housewife, I can’t cook.

7:30pm – I make something like a CPK pizza. Jeff’s taste buds are coming back and he is super pumped about it. Even if he wanted something super healthy, like a salad, he can’t have it until day 100 because raw foods could literally kill him at this point. Thank God we’re in Houston because this would not fly in Los Angeles. I remember to take out the CMV Chemo from the fridge this time.

8:45pm – We’ve finished eating. I want to Netflix and chill but I should probably shower. I have enough dry shampoo in my hair that I resemble a 17th century judge.

9:30pm – I flush Jeff’s PICC line and administer the CMV Chemo. I wait for it to finish and then flush it with Heparin. We keep the blood thinner companies in business, so I give him his second Lovenox injection of the day.

10:00pm – I give the dog a night time walk and, once back in the apartment, I wash my hands at an OCD level. I give Jeff his night time medicines: Cellcept, Ibuprofen, and Colace. I also give him a Dilaudid or Ativan if he’s in a lot of pain and can’t sleep. Mostly, that’s not a problem because fatigue is a side effect of about 18 of the medications he’s taking. He doesn’t sleep as much as he enters a light coma.

10:30pm – We’ve done it. We’ve made it through our first day home post transplant! Maybe now I’ll watch FOUR HOURS of 48 Hours Mystery with my headphones and my laptop light on the lowest setting in bed next to Jeff tonight. I check my MyMDAnderson appointments page to find out our infusion time tomorrow. It’s 6:00am. I shut my laptop and throw it in the trash.

What To Do When You Find Out Your Friend Has Cancer

Posted on December 30, 2016December 30, 2016 by jessicarblackwell

I asked my BFF for advice on being there after a cancer diagnosis because she handled it like a champ.

What To Do When You Find Out Your Friend Has Cancer

by Brandy Finmark

Cry. Stare at a wall. Start to text some of your close friends and family the news while crying onto your phone but then cancel the text because even that feels like it takes too much energy. Stare at a wall some more. Question reality. Robotically start doing laundry even though all of your clothes are clean because your mind is clearly handling this well. Do more menial tasks like organizing your desk or counting how many books you actually own. Is it enough to make you seem smart but not enough to make you look like you don’t watch TV? Start crying again because you’re thinking about your fucking image and now you’re comparing yourself to a Kardashian. Try to watch TV but just end up staring through it. Lay on your couch. Stare at a wall. Realize you forgot your laundry in the washing machine. Decide you’re never leaving your house or wearing clothes again because what’s the point of anything?

There’s nothing that can prepare you for getting horrible news. No handbook that tells you how to deal with a cancer diagnosis for someone close to you. When my best friend called me and told me her husband had been given 10 months or so to live, and he’s only 34 and they’re just 3 months married, you don’t know how to react. I sat on the other end of the phone, trying not to cry too hard, and let her talk as much or little as she needed. No matter how well you know someone, this person suddenly feels like a stranger. One you have no idea how to comfort or communicate with. Like after a break up with someone you’ve been with for years; they suddenly seem so far and distant from you and you have no idea what to say to them or how to act. Once we got off the phone, I remember thinking, “did I do enough? Was that okay? what can I do? Should I go to the hospital? Should I bring her something? Should I make her laugh? Make her laugh? What’s wrong with you? Are you a serial killer?”

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A few days after the initial shock, the reality of the situation sets in. Not only is your best friend; who you spend more time with than any boyfriend you’ve ever had; going through something no 31 year old should go through, but also this man, who’s become your close friend, too, is going through something no 34 year old should ever have to go through. The doctor’s had given him a diagnosis of a rare cancer called Angiosarcoma, which the google search for basically just says “SORRY BRO”. How can you process that? Denial. That’s how!

Quickly after the diagnosis, they had to go to a sperm bank before the chemo started two days later. I couldn’t stop thinking how fucking horrible it was that these two beautiful people, who just started their life together, have to now freeze his sperm if they ever want children. Then I couldn’t stop thinking about the fact that my friend had to get turned on enough to provide a sperm sample in a cup the day after he’d been told by life:

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How did that sperm donation even go? Was my best friend in there with him? Did she have to turn him on? That was the second time I realized I was probably a serial killer. Who fucking thinks about that?? I DO. I guess the only reason I’m talking about it is because sure, it’s a weird thought to have. But when we’re in these situations and our brains are at max capacity of comprehension, sometimes they go to weird places, so you shouldn’t feel bad if you find yourself wondering about the details of your friends’ sperm donation.

After the sperm donation, they prepared to start chemo to extend his life expectancy. No matter how well you know someone, you’re never quite sure how they’re going to handle grief or what it is you can do for them. Everyone needs something different in these situations, and all you want to do is help in any way you can. There’s also no way of knowing how you, yourself, are going to handle the changes that happen. You go from talking to and seeing your friend all day, every day, to only talking when they can muster up words. As the friend of someone going through this, you go through your own small “grieving” period. Grieving your life as it was less than a month ago. You feel like a selfish piece of shit because you shouldn’t be wishing your life was back to normal, but I think that’s normal. How would I know? I’m mostly a serial killer.

I really struggled with how to be there for them. What I could do for them. I’d offer so many things and then feel like I was annoying them by offering so much. One night, I was talking to a friend and telling her I wasn’t sure if I was doing enough, and she said, “all you can do is be there for them. That’s it.” And I realized she was right. That’s the only thing I could do. I didn’t have to keep sending things or hiring maids to clean their house or bringing over food or searching the black market for organs I could give them in case it helped… I mean, all of those things are great. But the number one thing I could do was be there whenever either of them needed me. And mostly, it was to vent. Talk. Sort through whatever horrible shit was going through their brains. The thing I had to work through was my response of how to fix it. I’m a fixer. I like to fix things.

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But I went against my instincts and instead of offering up solutions to her problems, I just fucking listened. I shut my dumb mouth and listened. And listened. And listened some more. And I realized how much that helped. Listening is the number one thing you can do for anyone who’s going through a horrible situation. Unless they’re on fire. Then throw a blanket or some water over them because listening won’t do shit. You’re welcome.

After a couple of weeks of feeling out what it is they needed from me, I figured out what it is I would do to be there and help:

A) Text her daily that I love her. Even if it annoyed her. The one thing I’ve heard is how lonely this can be to go through, so I just wanted both of them to know I was here, even if I wasn’t there. Also, text him funny gifs or air hugs. And that I loved him.

B) Let them know I was available to come over and bring food or movies whenever they needed. Not push it, just let them know. Then, anytime they invited me over, I’d cancel anything I had going on and be there.

C) Do things that aren’t asked of you. Clean their house, buy groceries, walk their dog. Basically just do anything you can think of that might make their life a little easier.

D) Balance being emotional and light. I made sure to be positive and upbeat when I was around them. I didn’t want him thinking he was being pitied, because no one likes that. I also sat and watched my friend cry, and I would cry with her. I would balance my crying so I was never crying MORE than her because don’t be a selfish dick. But it’s okay to show emotion. Cry. Hug. And you can never say “I love you” to someone you love too many times in this situation.

That was how I was going to move forward. In the coming weeks and months, I did all of those things as often as I could. And guess what? Your own life DOES move on. You have “small dramas” in your own life. Dating drama, friend drama, family drama. And you want to talk to your best friend, who always knew how to help you. You get sad that person isn’t available to help you through things. But you have to realize that friend is going through something you don’t understand. And they probably don’t have the capacity to deal with what’s going on in their own life, let alone yours. Their whole life has been turned upside down and you want to talk about the guy who didn’t call you back after 3 dates? Not that your problems aren’t problems, but just have some perspective. In times like these, your job as a friend is to be there for them. I’m sure you have other friends. And those friends will be the ones you go to for advice. Also, it helps to have a friend you can talk to about this situation, because you’re going to be sad and feel helpless and that’s okay. Just make sure you talk to someone else about it because again, don’t be a dick.

A couple of months after the initial diagnosis, the doctor’s realized they had misdiagnosed him. I KNOW. The new diagnosis was still cancer, and still a rare form, but this one gave him a shot. It went from 0-50%. It’s a weird thing when you’re actually EXCITED about a cancer diagnosis, but when you hear NO to MAYBE you’re all:

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Since then, my friends moved from LA to Houston to get treatment at MD Anderson. They have an apartment right next to the hospital, and have been in and out for treatments and appointments. It’s been about 4 months from the initial diagnosis and a couple of months since the new diagnosis. I think at this point, it’s easy for friends to “move on” with their life, and stop being as available. The immediacy sort of goes away. People care, obviously, but they have their own lives to get back to. I, on the other hand, have a unique situation where I’m incredibly single and alone and probably have an unhealthy love and affection for these two people and have nothing but time. I’m like a stalker without the restraining order. So I’m available to be more available. But when this is happening, remember that your friends are in this, day in and day out. It doesn’t just go away because you’ve finally come to terms with it and have decided you have to live your life. I mean, you do. I’m not saying quit your job and move in with them, but please remember to send them a text, or post something nice on their Facebook page, or send them a cancer singing-gram.

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This is a shitty situation. Never forget that it’s SHITTIEST for the person diagnosed with the cancer, and that they’re actually the ones fighting for their life, but it’s still a horrible situation for everyone involved. At times, you’ll feel overwhelmed. You’ll feel bad living your own life and having a good time when you remember that your friends are in and out of hospitals, living every day fighting to live another. You’ll listen to your friend and watch them go through every emotion, sometimes in one sitting. You’ll feel like you still aren’t doing enough. But you are. As long as you’re there for them when they need to talk. As long as you make sure and remind them that you’re thinking about them and they’re not in this alone. As long as you can clear room in your own schedule to make time to go be with them. If that means flying to Houston, then you fly to Houston.

This is a process. A long, arduous process that takes a huge emotional toll on all of the people going through it. So try and remember to show up for them. At the end of the day, that’s all you can do. That, and drink. A LOT. But not too much because what if your friends need you and you’re too drunk to answer the phone??? (That’s literally a huge worry for me but you live your life). Be good to yourself. Be healthy. Be grateful you have your health. And remind your friend, whose health is ailing, that soon, they’ll have their health back, too. And also, fuck cancer. Fuck it real hard.

It’s Called Medical ‘Practice’ for a Reason

Posted on December 21, 2016January 6, 2018 by jessicarblackwell

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.

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.

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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:

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.

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