Stem Cell Transplants 101: What's the plan?

I realize that for most people the news that "I'm getting a stem cell transplant" is about as meaningful as me saying "I'm having my naruffula collar removed" (which is to say that it sounds concerning, but doesn't mean a lot). This post is meant to serve as a sort of introduction for non-medically oriented friends and family, who would like to understand what this process will entail.

For starters, the stem cell transplant is not the first step in the process. I have to go through preparatory treatments (and those have to be working) before we move forward with the transplant itself. In the past, these treatments have always come in the form of chemotherapy. (Definition: Chemotherapy is basically poison that is most effective against cells that reproduce quickly, like cancer cells, hair cells, and the cells that line the interior of your mouth. That's why many people on chemo lose their hair and/or get mouth sores. But it is poison, so it makes people nauseous and feel cruddy). For my first transplant (Dec '09) I tried one prep regimen of chemo that ended up not being totally effective. We had to switch to a different sort of chemo, which shrank my cancer some but not completely. That was enough to move forward with the first transplant though.

Luckily for me there is a new treatment for Hodgkin's patients who have relapsed after an autologous stem cell transplant. (Definition: Autologous stem cell transplants are transplants where a patient's own stem cells are used, like my first transplant. These are less dangerous than Allogeneic transplants, which are transplants where the patient receives a donor's stem cells, like my upcoming transplant). The new drug that is available for treatment is called adcetris and it's only been available for the last 2-3 months. It was fast-tracked through the FDA's drug approval process after showing promising results in clinical trials (30% of patients had their cancer shrink down to nothing, another 42% had their cancer shrink somewhat). The great thing about adcetris (in addition to having good results) is that it is NOT chemo. This drug is a monoclonal antibody. (Definition of Monoclonal antibody: Your guess is as good as mine). So I'm not sure exactly what that means, but it's not poison and my doctor assures me that it will be the easiest treatment regimen I've been on so far. Since it's not chemo, I shouldn't have all the cruddy side effects associated with chemo. I'll get the drug once every three weeks. It only takes 1 hour to administer the drug, and then I'm finished until 3 weeks later when I go in for another dose. I'm also excited because this leisurely treatment schedule means the doctor probably will allow me to go through it without getting a port again. (Definition: A "port," or more correctly a portacath, is a small device that sits under one's skin and provides easy access to a vein. It feels like a MicroMachine lodged under your skin. Doctors and nurses can stick a "needle" in it, which Brynn calls a "nail," to administer medicine or fluids, or to draw blood. It's handy if you need to get stuck a lot, but for me it probably won't be worth it this time around).

My port, version 1.0 (in use). I'm hoping to avoid the 2.0 install.

We'll do 3 rounds of the adcetris (so for 9 weeks total) and then we'll do another PET/CT scan. (Definition: A PET/CT scan is an imaging scan that helps the doctors see where the cancer is and if it is growing or spreading. They inject radioactive sugar into my blood, which is mostly absorbed by rapidly reproducing cells, like cancer. Other kinds of cells that reproduce rapidly can absorb the sugar, like scar tissue, which leads to a false positive. Then I'm put in a machine that takes thousands of images of my body and shows where radiation is coming from. Since the cancer cells absorbed the sugar, and thus the radioactivity, they show up on the scan).

(Option 1) If that PET/CT shows continued growth of the cancer, we'll scrap the adcetris and try a chemo prep regimen. (Option 2) If the cancer has disappeared, we'll move forward with the transplant. (Option 3) If the PET/CT indicates that the cancer is shrinking but is still there, we'll continue with additional rounds of the adcetris and then reassess with another PET/CT scan at a future date.

Once we've shrunk the cancer down it will be time to move on to the stem cell transplant itself. Even if the adcetris eliminates the cancer altogether, the Hodgkin's might come back without the stem cell transplant. The transplant starts with a huge, HUGE dose of chemo. A dose SO huge, it completely kills my entire immune system. The hope is that the chemo kills off any remnants of the cancer, wipes my immune system clean, and we start with a blank slate. The problem with that, is that without an immune system I'd be a goner. Seriously, if we took no other steps after the "killer" chemo, I would die. This is where the stem cells come in. My body still hasn't fully recovered from the first transplant, so it's not making enough of its own stem cells for me to provide my own for the transplant. That's why I need a donor. So after the "killer" chemo has done its job and I have zero immunity to any germ in the world, I will receive the gift of life (aka. stem cells) from a donor. (Note: It is the chemo that might, fingers crossed, cure the cancer. The stem cells just repair my body after the chemo has devastated it).

***Revision 3/14/12: In an allogeneic transplant the above description isn't quite right. In my case I will receive an intermediate dose of chemo before my transplant which will take my immune system down very low. I will receive donor cells and grow a new immune system (which will be the donor's immune system). The hope is that the new immune system recognizes any future cancer growths as abnormalities and attacks them. So the part above about the killer chemo being what eliminates the cancer is wrong. In an allogeneic transplant we're counting on the donor's immune system to keep any future cancer in check.***

Those stem cells will be infused into my body just like I was getting a blood transfusion. It's really kind of anti-climactic, and the nurses say everyone smells like creamed corn on the day of their transplant. Those stem cells are the building blocks for a brand new immune system for my body. But it takes a long time for that new system to be built and begin to work. In the interim, the danger is that I might get sick. With no immune system my body is entirely susceptible to any germ that comes near it. I have no defenses. The doctors can treat me with antibiotics, but often times that's not enough. Many people who receive transplants die from infections that they couldn't overcome.

One of the bags of my stem cells. Looks unexciting, saved my life.

From beginning to end the transplant itself, which is all spent on one hallway of the hospital, takes anywhere from three and a half to six weeks. Possibly longer with complications. Patients are terribly bored and many are depressed. Children under 14 aren't allowed on the floor at all, ever, for any reason. During my first transplant that meant I did not see Brynn for over 4 weeks, which included Christmas. I watched her open her presents via Skype. It was tough, but I knew that getting that transplant was the only chance I had of celebrating many, many more Christmases with her. I'm disappointed that it failed, but I'm committed to doing whatever is necessary to be around for many more Christmases. If that means another transplant, then that's the plan.

**Disclaimer: I am not a doctor (obviously). This post is full of my best attempt to understand my own treatment and share that understanding with others. Please do not confuse this with a real medical explanation from a medical professional.

Rediagnosis: Cancer

Last night I was walking around in the Dollar Tree when my cell phone lit up with a call from my doctor. "Oh good" I thought, I'd been waiting to get the official word about my recent biopsy for almost a week. The surgeon had reassured me that the mass didn't look cancerous to him, and so I'd not worried much more about it.

My doc: "So how did the biopsy go?"

Me: "THAT'S WHAT I WAS HOPING YOU WERE CALLING TO TELL ME!"

Doc: "ha ha. No, the actual procedure. How's your incision?"

Me: "It was routine. I'm no more sore than is to be expected. How are my results?"

Doc: "Well, there were Hodgkin's cells in the biopsy."

Me: "You've *got* to be kidding me."

Doc: "I wish I was..."

And so I sat down the cheapie dollar scissors I was toting around. Walked out to my car in a haze. And had a discussion with my oncologist about what happens now.

So what happens now?

First, I move back to northern Kentucky. Second, I start a new treatment regimen, meant to get me ready for transplant. Third, I have another stem cell transplant, this time using a donor's stem cells. Finally, I kick cancer's ass...again (again). Easy Peasie.

I'm sure I'll relate more details as we go, but those are the basics. Here's a terrifying chart, to convey the gravity of the situation:

Overall survival of 118 patients from date of relapse after autologous stem cell transplantation for relapsed or refractory Hodgkin lymphoma.

It's like the giant hour glass the wicked witch of the west flips to let Dorothy know when she'll meet her doom, except less pretty.

There's a new treatment though (only out 2 months) that I'll be doing to prepare for the transplant. Hopefully that changes the statistics as they now stand.

If any of you would like to help me, here's what I need:

Please go to www.bethematch.org and sign up to be a stem cell donor. It's free to join the registry. They send you a cotton swab and some easy directions and once you send it back you could save a life. Very few people ever get called (1 in 540 according to a friend). Those who do get called usually have no costs associated with donating. The procedure itself (as I understand it) is the same one they used to collect my stem cells, which was just like giving blood but took a bit longer. Of the 10,000 people (many of them children) who need a donor every year, only 50% find a match. Please, please sign up to possibly save a life. A life like mine.

In more practical matters, I will need help with the move. Loading in Tallahassee, unloading somewhere in northern Kentucky. If anyone has a lead on nice but affordable places for rent in Burlington, I'd love to know.

If other things come up I'll let everyone know. For now though, hugs, distractions, and support are warmly welcomed.

We've Got the Beat, We've Got the Beat, We've...Forgotten Our Dance Moves

I am supposed to be at a conference. A national conference. The premier national conference in my academic field. In San Francisco. I am supposed to be networking, discussing, and engaging. And, of course, drinking, sight seeing, and spending time with friends. I am not supposed to be in Tallahassee. But I am.

Today was Brynn's hip-hop recital at the local gymnastics center. The dance classes there aren't a huge deal, but it was important to her. So important that when I told her I was going to miss it, she burst out in tears and cried for a solid five minutes. I've never missed one of her dance recitals (or music recitals for that matter). And where other kids have aunts and uncles, grandmas and grandpas, even dads; here in Tallahassee Brynn has me. Sure we have lots of amazing friends, but Brynn just couldn't fathom the thought of me missing her star performance.

So I stayed in town. We've had a friend over for dinner and a puzzle. Brynn made brownies. We watched a movie together. It's been nice.

Today was the big day, Brynn's hip-hop debut. She had skinny pants, funky shoes, and a high ponytail. Recital time.

Brynn, in an attempt to look "thug," throws peace signs rather than gang signs.

The girls started out strong. They've been rehearsing for weeks and the first three quarters of the song saw the class dancing almost in sync. I'm not sure exactly why things fell apart for the girls, but as you can see here, the entire class forgets the moves to the last quarter of the song.

You can see them all look helplessly at each other and then scurry off in a mix of relief and embarrassment when the song comes to a merciful end. Brynn told me that they were extra disappointed because they all thought they wouldn't get medals at the end (that everyone got for participating!) since they'd messed up.

All in all though, Brynn stood up in front of a couple hundred people and performed a dance that she's been practicing for weeks. She looked for me, and found me, supporting her in the crowd. Afterward we spent time together taking silly pictures and then she picked out the biggest, brightest bouquet of neon daisies a girl could want.

I miss my friends at the conference, but I wouldn't have missed something this important to Brynn for all the sights in San Francisco.

Fair Play

Today Brynn and I ventured to the North Florida Fair for fried dough, freak shows, and all you can ride collapsible whirling machines. The fair did not disappoint.

For $.50 a piece Brynn checked out "The World's Smallest Woman" and "The World's Smallest Horse." She pleaded for more change to take a gander at "The World's Largest Rat" and "Spider Woman with Eight Legs--Answers Your Questions!" but there are only so many quarters I'm willing to dole out for that sort of thing.

Before setting foot on any of the "unlimited" rides I'd paid $20 for Brynn to have access to, she asked for a $5 camel ride, a $5 surfing simulator attempt, a $5 giant hamster ball on water ride, and a $5 trampoline experience. Once I told her she could choose between any of the $5 diversions or her fried dough later, she promptly re-directed and found the regular fair rides.

Flight of the Fifth Graders

After a long day of riding everything from bumper cars to fun houses, it was finally time for fried dough. You can't eat too many fried foods too early in the day or else unlimited spinning rides turn into a really bad idea.

Going...

Elephant ears are our favorite fair-fried dough. You can't always find them, but they're infinitely better than funnel cake as far as we're concerned. Brynn went with powdered sugar AND cinnamon sugar (what could I say, it's only once [or twice] a year).

Going...

The timing was perfect. The night was beginning to cool down and our hands were a bit chilled. Giant, fresh, warm elephant ears warmed our hands and our insides.

Gone.

Brynn ended up covered in powdered sugar. I ended up feeling like maybe I should have worked up slowly to so much fried food (I also had a corn dog for dinner). Overall though, as long as fair food only works its way into my diet once (or twice) a year, I think it's an essential ingredient in personal happiness.

Many of you know how much I love fairs, my home town county fair especially, but all fairs everywhere as well. There's something magical about how time, responsibility, and calorie counting can be suspended for a few hours. I wasn't nestled at my computer working on a paper. She wasn't running around the house doing chores. Neither of us was eating a single tuft of broccoli. We could run, ride, play, and munch to our heart's content (or at least until we got a belly ache). And in the midst of so many people, all having a good time, we could walk around together and just enjoy each other's company. Sharing all those things, and just a general love for fairs, with Brynn is so special to me. Every year in my fair photos she looks exponentially more grown up than she did just one elephant ear ago. But at least I know that some part of both of us will always be a kid at heart.

So Someone You Know has Been Diagnosed with Cancer...Now What?

When I was diagnosed with cancer I went through a period of shock, disbelief, and denial...all unwitting strategies for staving off the uncertainty and terror that comes with such a diagnosis. Thankfully I have an amazing group of friends and family who supported me through that difficult time. But as days and weeks of remission turn into months and years, I'm increasingly aware of how many others are dealing with cancer diagnoses. That alone-ness I felt when I discovered I had cancer was a lie. It seems like about once a month someone new comes to me to relate a story of their friend or family member who has just found out they have cancer. It's devastating. I hate knowing that someone else is going through that experience, preparing for that battle. But everyone wants to know what they can do. I don't have the perfect answers, but I have a few suggestions. Many are things that someone did for me when I was sick.

The first thing to do is simply to ask if the person has anything they need or if there's something you can do to help. Don't push for an answer though. When I was sick I was terrible at this. Frequently I didn't know what I needed. If I did know, I was often too hesitant to actually ask. Your friend or family member might not want to admit that they can't do certain things, but I think it's always better to ask outright first. If they can't think of anything, but you know of something they are going to need help with (such as scooping a cat's litter box, which they're not supposed to do) maybe you can directly offer to do that thing.

Apart from asking directly, here are a few additional ideas for how to boost the spirits of, or lend a hand to, a person who has just found out they have cancer. (in no particular order)

1. Buy them cancer schwag. There's a colored ribbon for almost every variety of cancer. You could buy a car magnet, a keychain, or a t-shirt with their ribbon on it. For the most part these things seem kitchy, but at some level they reminded me that there were other people out there who were in the same boat I was in. I wasn't the first to have this kind of cancer and I wasn't the only one fighting it. One shirt I especially liked said "I fight like a girl!" and had a purple (blood cancer) ribbon on it.

2. Tell them stories of people you know who have beat cancer. When I was diagnosed I didn't know other people who had cancer. The only other person I'd known to have a blood cancer was my papaw, and he passed away shortly after his diagnosis. If you know success stories, share them! Whether it is simply that chemo wasn't as bad as someone anticipated, or it's a story about full on remission, these sorts of stories provide encouragement at a very discouraged moment. DO NOT relate stories about others you know who have lost their fight with cancer. It's good to be realistic (chemo sucks, radiation can be irritating) but someone who has just been diagnosed with cancer is keenly aware that it is a disease that kills people. That's not where you want to focus.

3. Send cards regularly. I loved getting cards with words of encouragement and support. I taped them all over my bedroom and, later, all over my hospital room. It's a simple gesture, but the outpouring of support meant a lot. I think it's especially nice when you can send a card every couple of months. Friends and family sometimes forget that the battle is a long process and support dwindles. Getting cards in those lulls is especially nice.

This was my home for over 3 weeks. See the cards on my bulletin board on the left?

  4. Send support. Many cities have services where one can order a warm, home-cooked meal to be delivered to one's house. These are nice on nights when your friend or family member is too tired or sick to prepare a meal. You can usually purchase any dollar amount worth of meals (sort of like a gift card) and your friend/family member can use them at their convenience.

Several friends gave me books, magazines, and even a kindle for leisure reading on long days while I was at doctor's appointments and getting treatment. Whatever your friend or family member enjoys (or maybe has always wanted to do) that can be accomplished sitting in a chair would be great. Buy an electronic fishing game, scrapbooking supplies, maybe even a rubik's cube. I crocheted a queen size blanket (entirely with a sc stitch for any fellow crocheters out there). Anything to provide a diversion during hours of chemo, blood transfusions, hospital stays, etc.

I was also very fortunate in receiving the gift of a cleaning service. Someone came to clean my house every other week. It was amazing, since it was important for me to be in a clean environment, but I was always too tired to do much cleaning. You could always pay for just one detailed cleaning, to get the house super clean before treatment. Alternately, if you have the time and live close-by you could offer to go out and do the cleaning yourself.

DO NOT send flowers if your friend or family member has already started chemotherapy. They may not even be aware of it, but once their blood counts (and immunities) are lowered, they're not supposed to be around fresh flowers. The hospital had to take my flowers away after my counts dropped. Luckily I was able to enjoy them for several days before that happened. One friend was clever and sent a bouquet of balloons instead. By special request they were all tied to a diet pepsi (which was especially exciting, since the hospital didn't stock caffeinated beverages).

5. Donate to the cause. From the American Cancer Society to smaller, more specific groups like fight2win.org, there are a wide array of organizations dedicated to researching and fighting different cancers. You could make a donation on your friend or family member's behalf. Again, this is the sort of "help" that isn't direct, but provides a morale boost. It always buoyed my spirits to think about the cutting edge research that is increasing survival rates every year. I was also touched to see the physical work several friends dedicated to Team in Training, which supports the Leukemia and Lymphoma Society

6. Buy a photography session. If your friend or family member is going to have to have chemo (and lose their hair) it might be nice to purchase a photography session for them and their closest friends or family. A friend arranged to have photos taken of Brynn and I before I started treatment, and I treasure them so much now. They're some of my favorite photos ever.

My post-diagnosis, pre-hair loss photo shoot

7. Help them find help. Discovering you have cancer is overwhelming enough, but there's so much more to deal with. In the months after my diagnosis I had to apply for several financial assistance programs. One was non-negotiable, as it was the only way I could afford to take one of my required medications. Another required receipted expenses be sent for reimbursement. Yet another would only accept applications on the first business day of the month. I was also unaware of several programs that would have been beneficial to me (such as a local blood cancer support group, the American Cancer Society's "Look Good, Feel Better" program, and their gift closet). There's help out there, help your friend or family member find it.

8. Offer them a ride, or a grocery run, or cook a meal one night. Ideally your friend or family member would be able to express what it is they need and when they need it. For me, however, that was almost impossible. There were days when I woke up, prepared Brynn for school, and got her on the bus,only to come back home and sleep until it was time to pick her up at the bus stop in the late afternoon. Even on those days I wasn't able to admit to my friends that I needed help. I was more likely to accept help when it was a specific offer made by someone else. I couldn't request help, and I was reluctant to accept it, but at some point an offer like "Why don't I make dinner for you and Brynn and bring it by on Thursday night?" was one I couldn't refuse.

9. Finally, remember that this is still the same person you've always known. After I was diagnosed I found that people began to discount their own problems or avoid talking to me about them at all. It was certainly done out of concern for me and respect for the rough time I was experiencing, but it made me feel a little out of place. In fact, sometimes hearing about what was going on in someone else's life (the good and the bad) was just the thing I needed to pull myself out of a funk. Everyone will be different in this regard, but don't take "special treatment" too far. At some point I said I didn't want to be "the girl with cancer" anymore, I just wanted to be plain old Shawntel. Don't let the cancer change your image of your friend or family member too much. 

All in all, there's no sure fire approach to dealing with a cancer diagnosis. Even the person who is dealing with the news is often unsure of how they want loved ones to react. Still, I think most people who are diagnosed with cancer understand that their friends and family don't always know the best way to offer their support. I appreciated everyone's efforts to encourage me and support me in gestures both big and small. Show your support in the best way you know how, just be sure to show it.

Tonight's Dinner Brought to You by the 1980s and the letters S, P, A, and M.

When I was growing up my mom made a heroic effort at cooking for our family. She never enjoyed cooking, but made us a meal every night. That said, my mom is not a great cook. One of my favorite dinners growing up was made by Hamburger Helper. In fact, I would guess that the majority of dinners we ate either came out of a box or out of the freezer. I didn't even realize that you could make beef stroganoff without the Hamburger Helper mix until I was in college.

These days Brynn and I have a broader (and fresher) range of foods that we eat. Sure I still buy the occasional box of Velveeta shells and cheese or Rice-a-roni, but Brynn has been exposed to hundreds of foods I'd never dreamed existed when I was 10. And yet, old palates die hard...

Recently I found myself craving my mom's potato casserole. As a kid I'd looked forward to this dinner, even requested it as my special birthday meal. So I called my mom and had her relay instructions to me over the phone. It's a simple recipe that, in retrospect, screams out "blue collar" and "1980s" all at once.

What you need: 6-8 potatoes (peeled, halved, and sliced about 1/8" thick), 2 cans of condensed Cream of Mushroom soup, half an onion (chopped), 1 can of SPAM (I chose the "healthier" turkey variety), pepper, and butter.

What you do: In a casserole dish (I used a glass cake pan) mix potato slices, soup, onion, pepper and SPAM (cut into 1/4" cubes). Dot the top liberally with butter. Bake at 375 degrees for 40 minutes (or until potatoes are soft). Eat.

Get your weekly allotment of sodium and retro, all in one helping.

I know that the thought of a dinner with SPAM (and condensed soup on top of that) makes most stomachs turn. At this point in my life 40% of my friends won't eat any sort of meat, more or less mystery meat. I grew up loving this dinner though, and while I can recognize how unhealthy and unappealing it is, I can't get rid of that craving. For the record, Brynn's favorite thing about it was the "chicken." When I told her it wasn't chicken and she asked, "Well what is it then?" I just sort of shrugged my shoulders and changed the subject.

The greatest fact about this recipe though, and I only just learned this, is that it originated in a microwave cookbook. That's right. An entire book of recipes devoted to never turning on your stove. If you could eat the 80s, they would taste like this casserole.

The Bird, the Bees, and the Best Question Yet

It's not that I'm afraid to talk to Brynn about sex. I've always answered her questions and tried to provide just enough detail to satisfy her curiosity without scandalizing her ten year old innocence. That's a delicate balance though. So while I'm not scared or avoiding the subject, I do try to approach it with the utmost care.

Currently, Brynn's working definition of sex is when two people touch their private parts together. I'm not sure she's ready for a more mechanical definition than that, seeing as how she's mostly appalled at the idea people would voluntarily engage in such behavior.

At one point she confidently asserted that she is "never gonna have sex." I inadvertently chuckled. She took offense and restated her point more passionately. That's a fine plan to have, I assured her, but also cautioned that one day, when she's an adult, she might change her mind.

A few weeks later, out of the blue, Brynn came to me with the question "Can people have sex and not know about it?" With her limited understanding of how things work she was afraid that private parts might brush together accidentally. I explained how you would certainly know if you were having sex. Being the overcautious mother that I am though, I countered that with a simplistic explanation of date rape drugs. Basically I told her the only way someone wouldn't know they were having sex is if someone else gave them an illegal kind of drug that makes people forget things.

Fast forward to tonight. Brynn's brewed on all the information she has for about 3 weeks since the roofie conversation. She knows that people have to have sex to make a baby. She knows how sex works. And she knows people are cognizant of when they are having sex. So over dinner Brynn asks:

"Do you think daddy gave you one of those drugs that make you forget having sex?"

Me: "No sweetie."

Brynn: "Well how did I get born then?!?"

Only my child would think that there was a higher likelihood of her dad giving me an illegal drug than there was of me voluntarily sleeping with him. You should have seen the speechless look of utter disbelief when I told her I had slept with her dad (and remember it). I know no one likes to be reminded that their parents had sex, but roofies are a whole new way to try to explain it away!