Chemo's for the Cancerous...Right?

So it's been a very long time since my last post here. To catch everyone up:
- we raised the down payment for an absolutely amazing house that we continue to be in love with
- Brynn did have to switch to a new school (again) but her grades have increased *dramatically* and she's in loads of honors classes (even honors chemistry!)
- I've continued to be mostly fine. My chronic GvH (graft vs. host) is as annoying as ever. I did land in the hospital again for myositis. That's what almost killed me last time. But this time we caught it much earlier and I was only in for a week, not a month, and never made it as far as the ICU. I'm still pretty weak in general and I get winded going up stairs or walking up a slight uphill grade, but I'm able to work part-time and do some crafting and go fun places with Brynn, so that's nice.
- The new boyfriend I mentioned back at the end of 2014 continues to be amazing and an unwavering support. He's also very funny (he'll tell you so) and makes some of the world's most groan worthy puns...but so do I, so it's a pretty good match.

That mostly brings you up to date. I'm on immunosuppresants, so there've been too many colds, viruses, and infections to mention. And they always drag on foooooor-eeeeev-eeeer because my immune system is, you know, suppressed. But that's really par for the course.

The primary issue is the GvH, and it's usually manageable. I carry eye drops 24/7 that I use all day long because I have dry eyes. My skin gets itchy (especially when it's hot out) or crazy dry when it's cold out. I have all sorts of issues with all my mucus membranes, especially my mouth where I have raw spots all the time. I can't eat spicy foods at all any longer. Pretty regularly I have rough places develop on my scalp, which are both itchy and unattractive. All in all, it's manageable but it isn't any fun.

So imagine my surprise when my doctor told me that a drug had *just* received FDA approval to treat chronic GvH! Up until August 2017, there were no prescription drugs available as a treatment for chronic GvH, so this was big news. It took about a month to negotiate financial assistance type issues. Imbruvica (Ibrutinib), the new drug, runs about $13,000 for a one month supply. Without financial assistance and my insurance (Medicare, which I have through disability) I wouldn't be getting the drug at all. But last week a package arrived on my doorstep, a month's supply of Imbruvica.

The Imbruvica Welcome Package

I began taking the Imbruvica last Wednesday, so I haven't quite been on it a week. It is technically a chemo drug and is used to treat a handful of different varieties of cancer. But I'm not taking it for its chemo properties; I'm taking it to help with the GvH. Unfortunately, the side effects are the same for everyone. So far I've experienced: nausea, light-headedness, loose stools (sorry, TMI, I know), fatigue, loss of appetite, and muscle pain. In all honesty, I feel pretty crappy. I've cancelled a few different commitments because I just constantly feel tired, nauseous, achy, and not-hungry.

Hopefully, my body just needs a little while to adjust to the new medicine and then I won't feel nearly so bad. I have noticed that one of the rough spots on my scalp, that had been quite red and itchy for months, has largely cleared up. I've not noticed any other GvH related improvements yet, but it's only been a week and I'm hopeful that more good things are down the pike. In the meantime I'll just be over here feeling like I'm going through chemo again. Blargh.

Hair Today, Gone Tomorrow

Today was the day I "let my hair down." Way down. Like all-the-way-to-the-shower-drain down. Almost every person who has received certain kinds of chemo (like the kinds I received to kick off my transplant) will awake one morning, look at their pillow, and see something remarkably like this...

Thank goodness Rapunzel didn't have this problem.

This is my 3rd turn at waking up to a hair coated pillow. Nothing prepared me for the first time, and not even the memory of the first loss quite prepared me for the second time. This round though, I was ready. So ready in fact that I beat the process. Many of you have already seen this, but here's Brynn cutting off my hair to send it to Pantene's Beatiful Lengths program to be made into wigs for cancer patients. Ironic wigs.

Youtube Video of the Hair Cutting

Some people lose their hair in patches, but mine just thins all over. Gradually at first but then much more rapidly. Despite clogging the shower drain with my locks, I still have enough hair tonight to perhaps have the loss go unnoticed. Tonight's sleep and tomorrow's shower won't be as kind. So I think the plan is to have one of the nurses come tomorrow and buzz my hair close to my scalp. It makes the mess on the pillow easier to endure. It also makes it easier to wear the periwinkle/lilac wig I brought just for the occasion. And in the end, like so many other things, it's no use hanging on to my hair. If it's ready to go then I can't make it stay. Luckily it's only hair and I can live without it.  And, if all goes well, I'll be growing a whole new crop of it soon.

Special Delivery: One Allogeneic Stem Cell Transplant, International Style

Ordinarily, stem cell transplants happen during the daytime, when first shift people are busily doing their first shift jobs. I'm not one for ordinary though, so when my stem cells arrived at the airport on an international flight around 8pm, we started gearing up for a late night stem cell infusion.

I was given pre-meds, like Benadryl and anti-nausea medications, so that I was as prepared as possible for the known side effects of receiving stem cells. Before the end of the night, I'd get more of each of those meds. There were additional concerns because, although my donor is a perfect match on 10 of 10 genetic markers, she has a different blood type than I do. So we knew my body might not take kindly to the cells.

♪ "Me and my stem cells..." ♪  (to the tune of the "My Buddy" or "Kid Sister" doll jingles)

Those concerns proved well founded when I (a) lost my dinner, (b) had an extended coughing fit, and (c) broke out in hives. Things were always under control though. After the infusion was complete I was given another (much larger) dose of Benadryl and you'd never have known I had any issues at all. I slept like a rock until 8:30am.

The process of infusing the stem cells was rather boring (apart from my antics). It's really just like getting blood. It takes awhile and you just sit there. Boring or not though, those stem cells are brilliant. Now that they're in my body they know to get into my bone marrow and re-grow an immune system for me. Eventually they'll completely overtake my system and even my blood type will change (to the donor's blood type and blood fingerprint).

What we hope happens is that new immune system will recognize any future cancer growth as foreign and attack it. There are worries with this too. The donor's immune system can mark *all* of me as foreign and start attacking my body from within. Fortunately my doctors are a top notch team and we're taking every precaution to prevent the stem cells from staging a full on coup. Everything from very expensive medications (like Prograf) to additional chemo treatments, help suppress the new immune system and make it less likely to rebel against my body.

A small dose of chemo, to keep my (kind, generous) donor's cells from attacking my body.

From here it's a bit of a waiting game. It will take about 10 days for the donor cells to get up in my marrow and start making any new cells to rejuvenate my immunities. In the mean time I'm taking anti-viral, anti-fungal, and anti-biotic meds to scare away any germs that might wander my way. An infection could be fatal if not caught right away, so I'm extra careful (and you thought I was a germaphobe before!). Now I'm required to wear a face mask if I leave the room for a scenic walk down the hall. Overall though, all the precautions and hiccups are a small price to pay for a shot at really, truly, FINALLY giving this cancer the boot.

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!

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.