When Acute Hepatitis is Good News

 I'll start at the end, which is where the good news is, then I'll explain how we got here. We've learned that my liver IS the culprit that's caused my stomach to fill with fluid and many of my other issues. But it's not liver cirrhosis (which would have been very bad). It turns out that my Keytruda treatments caused me to develop acute hepatitis. Now people don't normally get excited about hepatitis. We're excited though. It looks like no permanent damage has been done to my liver and we can hopefully get it back to normal. Wanna guess what the treatment is?

More steroids! So I'll once again get all the great steroid perks like increased energy and appetite, alongside all the steroid drawbacks like insomnia, facial swelling, muscle weakness, and calcium depletion. But if we can fix my liver, it should all be worth it. (I'll also be taking diuretics, which help take fluid out of your body and make you pee constantly. Those aren't treating the liver though, they're just to help keep some of the fluid swelling off my stomach). 

So how did we get here?

My last blog post had us doing a portal vein study. Those results actually came back perfectly normal. My condition had continued to deteriorate though. I was so swollen with fluid I looked seven months pregnant!

About to give birth to 2.5 liters of fluid!

I was struggling to breathe when I walked even short distances. Eating was nearly impossible. My weight was stable, but I could tell I was getting malnourished because my fingernails were starting to come in looking very unhealthy. Something had to give.

So my doctor decided to check me into the hospital. My hospital has a special unit for bone marrow transfer patients that's entirely separate from the other hospital units. It was constructed to minimize places dust or germs could accumulate and catered to patients like me in every way. While there we were able to get a paracentesis done, taking 2.5 liters of fluid off my stomach. And that wasn't even all of it! They also tested the fluid, which came back normal. We did a CT of my abdomen, again clearly showing my liver was enlarged. Then we had the main event, a liver biopsy. Once the biopsy was completed we decided I would go home for the weekend. The results wouldn't be back until Tuesday or Wednesday and we couldn't do much of anything in the meantime.

I continued to feel exhausted at home. I was still getting short of breath at the slightest physical effort and eating was still a challenge, even after the paracentesis. On Wednesday I was back at the doctor for results and it was actually really emotional for me. I'd been so worried about cirrhosis, that even the "good" news of hepatitis struck me weird and I cried. After a day to process it though, and a meeting with a gastrointestinal specialist too, I'm feeling much better about everything. I *did* start 60mg of steroids yesterday too though, so that might be some of what has me feeling better.

As far as the acute hepatitis goes, there was a lot I didn't know or understand at first. This isn't a viral hepatitis and doesn't have a letter associated with it (like Hepatitis A or Hepatitis B). It is a drug provoked hepatitis that can, apparently, be treated with steroids and cured. It's also not contagious in anyway, so that's great too. I will be going tomorrow for another paracentesis to take more fluid off my stomach. If we're lucky, this will be the last one though.

Now we just have to give everything time to work!

A Brief Update to Assure Everyone I'm Still Kicking

It turns out that not all transplants are the same. Of course I knew that going into the hospital, but the only thing I had to base my expectations on was my last transplant. Because of that, I didn't expect to get sick nearly as fast as I did.

During my first transplant (Dec 2009) my first week and a half or so was more about killing boredom than feeling ill. This time around, however, I was feeling green around the gills by day 2, and still don't feel anywhere close to "normal" (though I am feeling better). I've been taking all kinds of medications. Some to kill viruses, some to kill bacteria, some to kill fungus, some to ward off nausea, some to help my donor cells engraft when I get them, and some chemo.

That's 3 bags and a bottle, for those keeping score at home.

I'm taking each day as they come, and some are better than others. I don't always feel like talking, texting, or being on the computer, but I appreciate everyone's love and concern. All the cards and packages I've gotten have cheered me up on dreary days. I miss feeling like myself, but a little bit of rotten right now will hopefully equate to a lot of normal old "myself" time in the long run.

Cat Poop Disease; or The Transplant that Almost Wasn't

Getting to Jewish Hospital by 8am is never easy when you're coming from Northern Kentucky. No matter when you leave the house you're fighting rush hour traffic. This morning was no exception, but I headed out anyway, ready to have a minor surgery and then be admitted to the hospital for 3-12 weeks.

But that almost didn't happen. While I was waiting to register, my transplant coordinator came down to the lobby to inform me that there was an issue with my donor. She wasn't showing any signs of being sick, but her blood work indicated that she could be coming down with an infection. Bad news, since I'm inheriting her immune system and could also be infected.

My primary oncologist was alerted to the news. He would recommend one of 3 options: proceed as planned, wait until this donor was better, or screen an entirely new donor. Either of the last two courses of action would result in a delay of at least a week if not a month or more. Everything was put on stand-by, even my morning surgery, until my doctor could review all the details.

It turns out that my donor might be coming down with toxoplasmosis, a disease contracted and spread mostly by cats. When my doctor explained the whole situation (and recommended proceeding as planned) all I could do was cock my head to the side and say in disbelief, "Cat poop disease? Really?" I laughed so hard I almost cried. Somehow I just couldn't believe that a parasitic litterbox somewhere in Germany (where my donor is from) could be a matter of life and death for me. But it is.

After a good, exhaustion-driven laugh, we decided to move forward with the transplant process now.

Step one was to install a triple lumen Hickman catheter. This is a tube that comes straight out of my upper chest near my shoulder and provides 3 lines of access into my bloodstream. Doctors and nurses love it. I like not getting stuck with needles all day long, but I hate the "line." I'm always super stressed that some tiny little germ is going to sneak into me around the area with the open hole into my body. It's a necessary evil though for the transplant, so it's installed.

The way to this girl's heart is now directly accessible.

Next I was admitted into my room, allowed to change back to my non-hospital-gown clothes, and then started on my first dose of chemo. The idea is that the chemo will eliminate any remaining bits of cancer as well as lessen my immune system (so the donor's immune system has room to move in and make itself at home). Today's chemo was called Melphalan and infused over just 30 minutes. I was so exhausted that I slept through the whole thing and don't even remember my nurse unhooking the i.v. bag!

I'm feeling pretty good all things considered. Not much pain from the line. Just a headache and sore throat from the chemo. Hopefully the sore throat isn't foreshadowing mouth sores, but we'll cross that bridge if we get there. (12:30a update: developed nausea and it's aftermath, but took meds to get rid of it. Blech!) For now I'm just hanging out in my smallish, decoration-less room.

There's more wall space than you can see here.

If you'd like to see your card, postcard, or other fun mail featured here, check out my last post here: http://sintelligently.blogspot.com/2012_03_01_archive.html
All mail is greatly appreciated (and anticipated)!

This is home for the next few weeks, help make it homey!

Mail Call!: A Plea for Letters, Cards, and Other Forms of USPS Love

As many of you are aware, I'll be checking into Jewish Hospital in Cincinnati for a second stem cell transplant on April 11, 2012 to try to kick this latest recurrence of Hodgkin's Lymphoma (and to keep it at bay for good!) The transplant process itself is simple, but the preparation and especially the recovery are much, MUCH longer processes. In all my stay will be 3 weeks at the very *minimum* and could stretch out as long as 12 weeks. It's a difficult time, as I will not be allowed to leave the transplant unit (my room and 2 short hallways). Frequently people are quarantined to their rooms, which happened to me during my first transplant. "Stir crazy" and "cabin fever" don't even begin to describe it. What's worse is that Brynn will not be allowed to visit me the entire time I'm in the hospital since the rules of the unit require visitors to be 14 years old. She'll celebrate her 11th birthday without me, since I'll be in the hospital. I missed Christmas with her during my first transplant. We skype, but it's not the same.

And so, I've decided to ask a favor.

Two favors actually.

First, I would love for everyone to send Brynn a birthday card. Her birthday is at the beginning of May, but you can send a card anytime between now and then and I'll hold onto them for her until the big day. A belated card or two would be fine as well. Who doesn't love for their birthday to stretch on for a few days afterwards? For friends who would like to send Brynn a little something, she likes art supplies, journals, fun writing utensils (like gel pens and clicky pencils that click on the side not the top), hair accessories, and anything having to do with fashion design. She loves books, music, and clothes too, but she's a lot pickier about those! Must be a tween thing. Again though, I'm just asking for folks to flood her with birthday wishes (in card, letter, or postcard form), no gifts required or even requested.

Those can be sent to:
Brynn Ensminger
P.O. Box 598
Burlington, KY 41005

The second favor is similar, but more selfish. I'd like you to send *me* cards and packages. Days in the hospital are monotonous and the room itself is unexciting and impersonal. Mostly my stay is just a waiting game. My donor's stem cells will take some time to get into my marrow and create a new immune system for me. In the interim I have to hang out at the hospital and, let's face it, a person can only check facebook so many times a day (though I'm entirely unwilling to admit how many times that is). So entertain me! Here are some things I think it would be fun to get:
- a fun postcard from where you're from to hang up in my room
- any sort of card (get well and encouragement are great, but creative and funny cards are more than welcome too!)
- letters (same as with cards, I'd love anything from encouragement to snarkiness)
- a copy of your favorite cd or a mix cd of your favorite songs (go on, expand my horizons)
- your favorite book (unless your favorite book is Homi Bhabha's The Location of Culture)
- fun activity books, like logic puzzles, sudoku, etc.
- small decorations to put around the room. I don't have much counter space, but I have a bit and I can hang things
- your favorite movie (I believe the room has both a VHS and a DVD player). Movie recommendations from Netflix are great too!
- anything else a person can do when confined to a single room for 3-12 weeks. Be creative!

There are a few restrictions though, for health purposes. Please DON'T send:
- any plant materials, including live or dried flowers
- homecooked foods. This one really hurts. I loved baked goods, but I'm only allowed to eat foods that are ordered off the hospital's menu or food that is individually packaged and sealed (like frozen dinners, cans of soup, or small bags of chips/cookies).
- germs. Please wait to send stuff if you or a family member have the plague.

My address at the hospital (starting April 11th) is:
Shawntel Ensminger
c/o Bone & Marrow Transplant Center
4777 E. Galbraith Rd.
Cincinnati, OH 45236

If any cards or packages arrive after I've been discharged the hospital will forward those to me at home, so don't worry about my check out date (though you'll be sure to hear about that on the blog!)Every single card and letter will be appreciated so much!

A few of the cards and decorations from transplant 1.0

Also, feel free to share this entry with others. The more cards, letters, and well wishers, the better!