Day -4: Waiting for the other shoe to drop.

"You can have the worst crap in the world happen to you and you can get over it. All you gotta do is survive."

-from Grey's Anatomy

So much has happened in the 50 or so hours since I got to the hospital on Wednesday. Everything still feels kind of surreal and I think that's partially because of how sleepy and tired I am.

I will say that, like most people told me, this chemo isn't the kind that hits you instantly and makes you just start vomiting organs left and right. Right now, I feel okay. My numbers are actually trending a little upward, which is probably due to two factors. 

First, I'm currently getting a big dose of Decadron, otherwise known as dexamethasone, which is a steroid that is helping protect my liver and also helping keep nausea at bay. Second, I stopped the Hydrea over the weekend in anticipation of my admission and that was keeping my white count in control. So my white count, for example has gone up from 10.4 to 14 in the short time I've been here.

Here's a fun fact about Decadron, which I've had many times, including several times for surgery: It can, all of a sudden, make you feel like your privates are on fire when it's administered. I suddenly had to ask my nurse if that was normal this morning. It was shocking as hell. So if it happens to you, it's normal, just a hell of a way to jolt awake!

I've also had a small change in my medications. I was fluconazole, otherwise known as Diflucan as a preventative anti-fungal medication. But because my liver needs protecting, they decided that Micafungin IV would be better for my liver and body overall.

Otherwise, my biggest symptom is that I'm more tired. They want me walking 30 minutes a day, which doesn't seem like a lot and in total, I've walked more than that all day, but they want you to go on dedicated walks and the fact is, simply, patients who walk more, do better. So I've been giving it my best. I went on almost 40 minutes of walks on my floor yesterday, which was better than a mile and a half, plus all the walking I do around my room and to the bathroom, which is frequent, because I'm a big water drinker and also they are pushing IV fluids to me all the time.

Today, I also had the privilege of meeting Mark, a man who had a BMT here almost 10 years ago and who for the past five years has been a volunteer and mentor with the program. I'd seen his picture and a display case with information about him as I was walking yesterday, so it was really nice to meet him. He's in his 60s and he beat cancer right here. He's very inspirational and extremely down to earth and real about the battle, without being negative. 

The thing I'm still most nervous for besides throwing up, is the mouth sores. I'm a bit of  worse when it comes to mouth pain and I also hate things that taste funny. So things that help me might be a struggle for me in a different way. 

Today was also a dressing change day for me. When I had my first line in back in June, it was sealed with a clear plastic window bandage, the adhesive for which burned me so bad I got blisters -- I react to adhesives easily, so this wasn't a shock overall, but the severity was alarming. But I was told there was another option in the hospital. The dressing I'm allergic to and that is most widely used is the Tegaderm bandage. The dressing I'm now using with my second line is called Medipore. It's a cloth dressing that is much less aggravating than the Tegaderm. The other thing I've noticed is that because I can't see the hole in my body with the tube coming out, I'm much less focused on it, which means less pain overall. It's not nearly as bad as the first time. 

Anyhow, that's all that's going on with me. Nothing huge to report, just tired and kind of waiting for the other shoe to drop.

xo,

Heather

Day -5, Part II: The Big C

"Don't give up. Normally it is the last key on the ring that opens the door."

-Unknown

Normally, when you hear the phrase "The Big C" people think of THE big one -- cancer. I'll never forget the day I heard it about me. For a lot of people, it's the worst thing they can think of hearing and though it definitely was for me at the time and still is in some respects, I have learned that there are some things that are worse than cancer. Life without people you love. Incredible, unending pain. Throwing up over and over for days. Dark, deep depression. These are just a few things.

Today, my second nurse of the day came to my door and put on a yellow sterile gown and gloves and taped a sign to my door. Now, because I've had cancer for six years, there are few things I fear that she could be putting up there and it is by no means the worst thing I've been told, but it is a straight up pain in the ass, literally.

Clostridium difficile. Otherwise known as C. Diff. Yet another "Big C."

When you're already sick and you know you're going to be facing a whole host of gastrointestinal upset, the last thing you want to hear is that you want to hear is that you have C. Diff. Typically, it presents as non-stop watery diarrhea along with very severe abdominal cramping, among other symptoms. But you CAN be a carrier of C. Diff and have no idea. I am the latter. The good news is that aside from a little stomach cramping that I'd assumed was due to some of my meds, I feel like I'm supposed to feel at this point in time. It is however going to be very annoying.

The biggest question is: How exactly did I catch C. Diff? Also: What does it mean for me and my caregivers now?

* It’s something you can catch if you are immuno-compromised which I have been — I was neutropenic for a couple of weeks there shortly after having a UTI and some heavy antibiotics, which wiped out the good bacteria in your gut that would normally fight off C. Diff.

* I can no longer use public spaces like the lounge. My caregivers (my mom and brother) can, but they have to put on a gown, then immediately wash their hands, then they can go out.

* I can walk the halls, but I have to do the same thing: put on a gown, a mask, wash my hands, then go out.

* They can leave the floor and go anywhere else in the hospital not in a gown. If it’s your intention to go beyond the double-doors, then you don’t have to gown-down.

they have to wipe down the seat with a bleach wipe when they’re done.

* Hand sanitizer is only fine in the room to protect me. If you are leaving the door to my room to go into a public space, you have to wash your hands because hand-sanitizer doesn’t kill C. Diff. This is the big deal -- hand-sanitizer is good, but not good enough for C. Diff. Don't mess with it.

* I’m taking Vancomycin for it. I am mostly symptom free, besides some cramping that I thought was was totally normal for my other conditions/medications. 

* I can't use the public laundry here. My caregivers have to take it home, wash it, and bring it back.

In general, it doesn't change a whole lot for me, but it does change a lot for my caregivers and I feel horrible about that. Prayers and good thoughts for them would mean a lot to me. They are already going way above and beyond and this isn't fair to them and I feel rotten about it.

In other news today, we had our first switch -- my mom headed home with my dad and my brother is here with me. He's not physically with me at the moment. He's on a walk around Ann Arbor/U of M right now, which is fine. He knows when to be with me and when to take some time for himself and give me some time for me, which is great.

Also, I was on a walk today with my family around the floor and one of the medical professionals -- I'm unsure of her role, because she was wearing a white coat, but that could mean doctor, nurse practitioner, or physician's assistant, so I have no idea -- was wearing this beautiful upside down crescent moon charm on a necklace and I told her how pretty it was. A few minutes later, I passed her again later in my lap and she caught up to me and GAVE ME her necklace for good luck. It was so unexpected and sweet and she had to rush away before I could get her name or properly thank her. I'm wearing it now. 

Another interesting thing I'm participating in is a clinical trial called TempTraq. Basically, it's a silicone patch that you wear under your arm. You get a new one each day and it transmits your body temperature to the researchers and also to an app on your phone that tells you your temperature in real time. And since I'm participating in it now, I get to keep participating in it for the rest of my first 100 days at home, which means it'll be so much easier to keep track of fevers. I'm really excited about it! 

I put my first patch on around 2:30 p.m. and it didn't take long to get used to. It already feels totally natural. And because it's silicone, I'm not reacting to the adhesive like I do with Tegaderm and other dressings and tapes.

So far on my checklist for the day, I've:
-brushed my teeth once
-I've done all my salt & soda rinses, but will probably do one more before bed to be safe
-taken one walk in the hall (I need to get a couple ore in)
-met all my fluid goals by like 300% (I'm a big water drinker!)

So that's how things are going on this end. Things are still okay despite this ever-evolving medical situation.

xo,
Heather

Day -5: Into the Unknown

"Whenever we think we know the future, even for a second, it changes. Sometimes the future changes quickly and completely. And we're left only with the choice of what to do next. We can choose to be afraid of it, to stand there, trembling, not moving, assuming the worst that can happen. Or we step forward into the unknown and assume it will be brilliant."

-from "Grey's Anatomy"

I'm here. It's 4:55 a.m.

Yesterday, at 9:30 a.m. I checked into the hospital for my transplant and I haven't had time to look back. I've just had my first 4:30 a.m. wake-up call for blood and in the next hour, I'll receive my first dose of IV chemo in the form of Fludarabine.

I got to my room last night around 7 p.m. after hours of waiting. We spent the most of my morning in the clinic meeting with my doctor one last time. We spent the early afternoon getting my line placed back in. Since we now know I am severely allergic to the Tegaderm adhesive dressings, I have a more cloth dressing now, thank goodness. No more blistering rashes!

Placing my line yesterday went, in my opinion, better than the first time. They couldn't get an IV in my to save their souls, but that's not their fault, that's my veins' fault! But luckily the PAC running my procedure could get access through the incision in my neck that he made to place the catheter and was able to sedate me from there, and aside from squeezing a nurse's hand a little too hard during the numbing, it went smoothly.

I was pretty happy until about 4:30 p.m. -- I'd started to think I was preternaturally adjusted to this line this time because I'd had one before and I knew how it felt. 

I WAS SO SILLY! 

The line and the trauma that went with it were still just as bad. Thank goodness they didn't even blink when I asked for something for pain. 

Finally, we were allowed to go up to 7 West which is an all adult BMT floor in what is otherwise a children's and women's hospital, with my three wheelchairs full of things to keep comfortable and make the space homey. I got the things I need to unpacked unpacked, then I set up my FireTV. If I want to play my Switch on the big screen, I'll need Kyle to help, because I only had one climb onto the counter in me and I've used it up! Anyhow, my mom and I watched Friends and ate chocolate ice cream. The TV here is AMAZING. The picture quality is better than any of our TVs at home, and they're no slouch to begin with.

It's 5:20 a.m. now and my first dose of Fludarabine has started. I'm also about to get Oxy for the pain from my line. It's no joke.

They've started me on Compazine (orally), Zofran (intravenously), and Decadron (intravenously) as of about 4:45 a.m. to get a jump on the nausea. Just in case, I have a beautiful pink bucket next to me, but my goal is to try and read a little, then sleep through it. The Decadron and Zofran are both making me tired already.

I have a checklist of things I have to do every day. It looks a little like this ...

• Brush my teeth -- two times a day
• Baking soda & salt water gargle -- four times a day
• Walk in the hall -- at least three times for 10 minutes (or however I want to get to thirty minutes)
• Water & fluids -- drink at least four big cups of water a day. I've already done two this morning, plus a chocolate milk
• Shower -- once a day
• CHG wipes -- these are sanitizing wipes I use on my line and around my dressing post-shower

So far, I've already knocked a couple things off my list!

They hooked me into my IV last night. It's going to go everywhere with me, even the shower! So if you're getting one, give it a name and learn to commit. Mine is named after my favorite current TV character, Dr. Spencer Reid, but he'll just go by Reid for short.

My Fludarabine has just finished. It's about 5:49 a.m. It takes about 30 minutes. My Busulfan is up next -- I'm nervous about this one. The Busulfan is supposed to be especially more toxic. One round of it takes about 3 hours.

The only snag so far is that I got this beautiful, five and a half foot wide panoramic poster of the New York Skyline, which I also have in my office, and I got a new second one that I planned to put it up here, and there's not one area with that kind of wall-real estate here. So it'll probably just go up in my room. 

My mom is with me right now and will be 'til about noon, then Kyle switches in for the next three days. I'm so grateful to have them with me. 

Leaving the dogs yesterday was the hardest part of the day. I cried into Juliette's fur for about 15 minutes. My hope (and if you're a positive thinker or a hoper or a praying person) is that Mira eats at least a little bit of her breakfast and doesn't throw it up and that Juliette isn't too depressed. I left them the blankets I've been using on the couch the past several days and I also left my old pillow (we just got new) that Juliette loves to snuggle. I hope this brings them comfort. And later today, I'll call and talk to them.

In the meantime, I'm just trying to get comfortable and try not to be too nervous.

Ask me your questions! If you aren't a part of my Facebook group already, here's the link: Heather's Leukemia and Bone Marrow Transplant Journey.

xo,
Heather

Day -15 (again): All Panic, No Disco

"Change is literally the only constant in all of science. Energy, matter, it's always changing -- morphing, merging, growing, dying. ... Change is constant. How we experience change, that's up to us. It can feel like death, or it can feel like a second chance at life. If we open our fingers, loosen our grips, go with it, it can feel like pure adrenaline. Like at any moment, we can have another chance at life. Like at any moment, we can be born all over again."

-from Grey's Anatomy

Possibly Day -32: The Sound of Silence

"There are somethings in life that simply can't be avoided, no matter how uncomfortable they make us. And there can be rewards in stepping outside your comfort zone. Even when the thought of it makes us want to puke. Even when we want nothing more than to run screaming for the hills. They say what doesn't kill you makes you stronger. But sometimes, those people don't know what the hell they're talking about."

-from Grey's Anatomy

Day Unknown: So close, but yet so far

"There’s an end to every storm. Once all the trees have been uprooted. Once all the houses have been ripped apart. The wind will hush. The clouds will part. The rain will stop. The sky will clear in an instant and only then, in those quiet moments after the storm, do we learn who was strong enough to survive it."

-from Grey's Anatomy

Day -16 to Day -12: What to expect when you're expecting a BMT

"Change: we don't like it, we fear it, but we can't stop it from coming. We either adapt to change or we get left behind. And it hurts to grow. Anybody who tells you it doesn't is lying. ... Sometimes, change is good. Oh, sometimes, change is everything."

-from Grey's Anatomy