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!

Bone Marrow Biopsies Literally Suck...with a bonus Dexter souveneir

Bone marrow has fascinated researchers for decades. It's amazing really, producing hundreds of billions of blood cells every day as well as lymphocytes for your immune system. It is also, unfortunately, notoriously difficult to get to. Luckily for me, doctors manage to do it anyway like in the bone marrow biopsy I had yesterday.

The day's visit began with collecting a vial or two (or 15) of blood to run all sorts of pre-transplant tests. Basically any disease they can test for using blood gets tested. If I currently have some sort of disease or infection that my body is masking or simply carrying, that illness could develop in full force once we deplete my immune system. We run all these blood tests to be sure I'm completely healthy...you know, other than the cancer.

We took so much blood from one vein it collapsed and we had to stick a second one!

Then it was off for the day's main event, my third ever bone marrow biopsy. I'll never forget the first one. It was easily the most concentrated, intense pain I've been in in my entire life (and I've had a baby)! I actually lost the ability to form words and could only scream in awful shrieky noises. (Yes, yes, shout out to Elaine Scarry for those who have read her.) My subsequent marrow biopsies have been much more tolerable, although still not my favorite way to spend a Tuesday.

In order to prepare for the biopsy my doctor ordered me to take four Ativan (.5mg each) before arriving at his office, and two more once I go there if I was still feeling anxious. For those who aren't familiar, Ativan (aka lorazepam) is an anti-anxiety medication that chills you out and makes my memories of traumatic experiences kind of warm and fuzzy around the edges. So six Ativan later I was ready for my procedure.

Transplant coodinator (to me): How are you feeling? ...other than high?
Me (smiling): I don't think I'm feeling anything *other* than high.

You'd want to be high too. That's only part of the needle.

Shortly thereafter I was rolled on my side and the doctor began preparing the site where he was about to dig for marrow. I think they roll you on your side so you can't see the torture instruments they keep back behind you, but they assure me it's just the easiest position for access to the bone. I'm skeptical.

At this point I'm a little fuzzy on how things proceeded. Cut me some slack, I couldn't see what was going on and I was drugged. The version I remember is mainly a series of me thinking up synonymns for "ouch" and "f*ck* but fortunately my friend took some pictures to help tell a more coherent and less foul-mouthed story.

Step one is, of course, numbing the area. I think they numb at various levels, all the way down to the bone. Just local anesthesia though, I get to be wide awake the whole time. The next steps are all a bit of a jumble, but they use a long needle to get down to my bone, then at some point switch the needle for a small drill to drill into my bone, and they use a suctioning device to suck a sample of marrow out of my bone. I kind of think there's a long thin tube (like a tunnel) that goes down to my bone and they can put different implements through it (like a needle or a drill) but that's just my best guess. I'm pretty sure the sucking part hurts the worst, though the slow drilling part wasn't great either. Pain shot all the way down to my knee, which I suspect was my marrow protesting its abduction.

"Ooh ah, just a little bit...ooh ah a little bit more!"

What they gather (the marrow) looks mostly like blood but it does have some little chunks of bone in it as well.

I was hoping for something a little more rewarding, like molten gold.

Finally the marrow is droppered out onto glass slides to be sent off to a variety of places for testing. First and foremost we'll test to be sure no cancer has snuck down into my marrow, since that can happen with Hodgkin's. I'm not entirely certain what other tests will be performed. Some will be to prepare me for transplant, others will further knowledge on blood cancers and transplants. Before the procedure started I mentioned how all the slides laid out on the counter reminded me of the t.v. series Dexter and his collection of blood slide souvenirs.

Most people would be reminded of looking under microscopes, I think of fictional serial killers.

Once everything was said and done, I was ready to be on my way. I insisted I was just fine to walk out on my own, but apparently I kept leaning on things and the doctor said I went out in a wheelchair, no ifs, ands, or buts. I wasn't happy about it, but I cheered up when they have me my going-home present.

My very own Dexter-esque blood slide!

"Warp Speed" Ahead: Some Great but Terrifying News

(First, a quick explanatory disclaimer. As I progress through this treatment process, my understanding of exactly what we're doing to my body is always expanding. Some of the descriptions in my earlier blogs aren't as accurate as I originally thought, so if what I explain here seems to contradict any info I offered earlier it's just because I'm getting a deeper understanding of the differences between the two types of transplants.)

For days now I've been promising to share some very good news with you, and it is very good news indeed. The first three treatments of Adcetris "completely resolved" my cancer. It's gone! The final line of my PET scan report reads, "No evidence of advancing disease or recurrent disease." My body is cancer-free. When my doctor told the Adcetris drug rep...she cried. This is amazing news.

But it's news with implications. From the moment of my re-re-diagnosis, we've known that the end game was to get me in for another transplant, this time with a donor's cells. "Why?" you ask, "Your cancer is gone." Well since Adcetris is so new (released for use in August 2011) no one knows the really long term effects of it. Sure it caused me to go into remission after only 3 doses, but is it a lasting remission? No one knows. My doctor told me that if I hope to see Brynn graduate high school I need to have a transplant, and so that's what we're going to do. If we waited, and the cancer did come back, it might have developed a resistance to the Adcetris and then I would have to try harsher, less-effective drugs to prep for a transplant. We're not taking that chance (though I wonder about it a lot). We are now moving towards an allogeneic transplant at, what my doctor terms, "warp speed."

Each of those things flying by are entries on my "to-do" list.

Three potential donors were "tapped" and all three went in for the required testing to possibly "Be The Match." A few years ago donors and patients were matched based on 6 genetic markers. In recent years matching became more sophisticated and 8 genetic markers were used. Now, thanks to ever expanding technological advances, my donors and I were matched for 10 genetic markers (each additional marker increasing the likelihood of a successful transplant). Two of the tapped donors match me on all 10 markers. And they're good candidates too. The ideal donor is young and male...or if female doesn't have children. My two 10 of 10 matches are ideal. So now we're narrowing in on who, out of those two, is the very best choice. But I definitely have a donor.

There are two types of allogeneic transplants, myeloblative and non-myeloblative. The first kind (myeloblative) begins with the chemo like I got with my first transplant. It's meant to kill any trace amounts of cancer that are still around, but it the process it kills your immune system too. This was my "killer" dose of chemo. With this kind of transplant the chemo would kill you unless you received the stem cells to regrow your immune system. It turns out that this time around I'll be getting a non-myeloblative transplant, which means that the chemo they give me will be an "intermediate" dose (though still serious stuff). In this case the chemo is meant to clear out my immune system so we can install my donor's immune system. That new immune system will (ideally) recognize any future cancer growths as a problem and attack them. One serious potential complication is that the new immune system can also recognize my own body as foreign and start attacking my whole body.We're *hoping* that doesn't happen.

(graphic picture of the effects of graft vs. host disease mercifully ommitted here)

 So now things are fully in motion to get me ready for transplant. I'll go for a bone marrow biopsy next Tuesday. (OUCH!!!) Then an additional barrage of tests the Monday after that (3/19). There will be meetings with the dietitian, the psychologist, and several educators. I'll have my teeth cleaned (to reduce the risk of oral infection once the transplant is under way). And there will be loads of appointments. But then on April 11th (if all goes according to plan) I'll check into the hospital to begin the process of my second stem cell transplant.

I'll be in the hospital for longer with this transplant, and the "recovery" period after discharge ranges from 6 months to the rest of your life. I'll actually be on immuno-suppressants to try to reduce the effects of graft vs. host disease, but that means I'll be extremely vulnerable to infections. It's all a very delicate balancing act. Delicate, terrifying, but necessary. I want to see my baby girl graduate one day.

Some People Get Allergy Shots, I Get Shots of Radioactive Sugar...Still Not a Superhero

Approximately every 3 months I go to the hospital for a PET/CT scan. I've been doing this for years now. I'd love it if they had a punch card for regular customers. The very sweet ladies who work at the radiology check-in desk recognize me now and comment on how long my hair is getting. Each scan retails for about $4,000 or so.

Still, scans are fantastic because they are the only way for me to tell if my cancer is responding to treatment. Since I don't have any physical signs of having cancer right now, there's no way to know if the cancer is retreating or charging forward...until a scan.

The scans themselves are rather dull. I arrive at the hospital after fasting since the evening before. A couple times in the past I had to drink the barium "milkshakes" before a scan, but haven't been "treated" to those in a long time now. I just go in, answer a few quick questions, and get a finger stick to check my blood sugar. Assuming my blood sugar isn't too high (and it never has been) then I get injected with radioactive sugar (aka. the tracer). This is my favorite part. The sugar comes in a plastic syringe (just like any other injection) but because it's radioactive there is a thick, heavy *lead* protective outer cover. It always makes me think of Superman and kryptonite. Except in this scenario everyone in the radiology department has a weakness to it, but they're gonna inject it directly into my veins and let me metabolize it for 45 minutes. I'm not a superhero yet, but I'm taking my vitamins.

What's that "special glow"? Radiation!

After the tracer is coursing though my body, the staff dims the lights and leaves me in a quiet room for about 45 minutes or an hour, presumably to see if I turn into the hulk or bite any unassuming, non-radioactive spiders. That hasn't happened yet (blech, spiders), but what usually does happen is that in any areas in my body where cells are reproducing rapidly (you know, like cancer cells) the radioactive sugar is sucked up because those cells require the energy the sugar provides to keep reproducing so quickly. Then they run me through a machine that takes cross-section pictures all up and down my body to see what bits are lighting up as radioactive, and if those bits are any bigger than they were the last time I had a scan. For me it just means lying still with my arms above my head for about 30 minutes. Then I'm finished, which by this time is a huge relief because I've not eaten in awhile and could really go for some lunch.

And yet, while I'm generally bored by the scan procedure itself, I do appreciate the almost magical technology setting us apart from a century or two ago when I'd probably be going for blood-letting instead of radiation enhanced pictures of my innards.