A Bit of a Birthday, My Immune System's First 365 Days

On April 18, 2012 I was stuck in a hospital room. We were scheduled to do my stem cell transplant that day, but we knew it would be late in the evening. The kind donor whose stem cells were the best match for me was a woman I'd never seen or spoken to who lived in Germany. She would be donating her cells there and they would be flown internationally to me.

What is very much a miracle of modern science seems rather anti-climactic when it's actually happening. Receiving a stem cell transplant looks a lot to the untrained eye like getting blood. There are small bags of pink-ish fluid (the stem cells) that are hung from an IV pole and given to you just like you are getting blood.

Just a few LIFE SAVING stem cells, recently flown over from Germany.

There's no anasthesia, no surgery, no special pain or discomfort. You just lay in bed and the building blocks of your new immune system drip into you. It's a long and mostly uneventful process...but it is one of the most amazing procedures human beings are performing these days and it's certainly saved more than just one life.

And so as the hours stretched from late on the eighteenth into the wee hours of the nineteenth, a new immune system was born. An immune system that would hopefully (a) not attack my own body so badly that it crippled or killed me and (b) attack any new cancer that would try to grow and quash it. It was and is the opportunity for life, in the face of a disease that would certainly take that away from me.

Three hundred and sixty five days ago I was terrified...and sick...and very hopeful. Today? Well I'm still a bit terrified. We've had some bumps over the past year and mine is an aggressive cancer with few further treatment options, and so I think one necessarily carries a burden of worry. And I'm still a bit sick; the GvH from the transplant making the inside of my mouth raw and sore in addition to causing other issues. But most of all I am immensely hopeful...and grateful...for this last year and for the future.

I've had 365 more days to watch my daughter grow and mature. To enjoy her successes and be supportive at times she's had less success. She has made art and had boyfriends and joined her school's winter guard team. And I was able to be here for that. To go to her competitions and bring her flowers and stuffed animals for a job well done.

See what I mean about the growing and the maturing!

I've also had another year to spend with my friends and my family, again through both highs and lows. I took my (then) 82 year old grandma to vote in her very first election. I also took her to have cataract surgery. Friends and I have gone to concerts, craft stores, and baseball games. We've also hung out around fire pits and in living rooms. They've come to visit and I've gone to see them. And I've never been more supported and loved.

Mammaw on election day.

Without this year I would have missed all of this, and even just the thought of that breaks my heart.

I guess what I'm saying is that for my one year transplant birthday, I want to celebrate all the extra love I've been given in 365 days. The experiences that would have been stolen from me. The wonderful-beyond-words people who make up my world and are the reason this past year and every year are precious. I've gotten to have it all.

If you are between the ages of 18 and 44 and you haven't already, please register to be a stem cell or bone marrow donor at http://marrow.org/Join/Join_the_Registry.aspx    And encourage others to register! You are more than welcome to share my story and this post.

Give the gift of birthdays. It's free and easy (you are sent a kit and swab the inside of your cheek). You could give someone 365 more days. You could give them years. You could give them a life filled with love and friends and joy. Just like you've given me. Thank you.

"Unremarkable"

This past Wednesday I had a PET/CT scan. It's the scan that makes me look like a fully lit Christmas tree when my cancer is growing. All the cancerous lymph nodes light up in bright colors and make the scan look interesting and vibrant.

Some pictures from one of my 2009 scans.

Today I found out that my scan was "unremarkable" (in the words of the radiologist who wrote up the report). There were no bright baubles floating in my chest. No shiny lymph nodes to catch one's eye. There was NO CANCER.

I'd worried most of Thursday night and into the early hours of Friday morning that the results were going to be bad. When someone fails an autologous transplant their long term survival rates are low. When someone fails an allogeneic transplant after failing an autologous transplant, their odds aren't talked about.

So a bad scan would have been very bad news. There aren't any further treatments that are likely to be curative. The word I ran across last night in the scholarly literature was palliative, meaning relief of suffering, not trying for a cure. From what I could find, even the clinical trials taking place right now are reaching early, disappointing findings.

It's possible that right now my cancer is being kept at bay by the last doses of Adcetris I received in December. From here on out we'll have to rely on my donor immune system to keep the cancer from coming back. I'm completely off of all my immuno-suppressants though, and the cancer is gone. So my immune system has all the advantages I can give it to hunt down any cancerous cells and quash them before they get out of control.

We'll do another scan in 3 months, which will tell us much more about how effectively my new immune system is able to fight off the cancer. Today results were VERY good news though. No cancer now means that even though my odds still aren't great, from where I'm at today I have the very best possible chance of beating this. So a small sigh of relief (to be followed by a restful night of NOT googling hematology journal articles).

A Little Bit of Hair

In my last post I mentioned that I'd be spending my down time doing several things, including growing some hair.

Doesn't matter how many times it all falls out, I just can't get it to grow back in red.

 It isn't exactly a Pantene commercial, but it isn't exactly bald either. In another few weeks it will start growing down over my ears and looking funny with my hats. Shortly after that it will get long enough to look wild when I wake up in the morning (think Medusa, post-chemo). And, with any luck, after that it will be a pixie cut reminiscent of this...

Yes, I realize I have a bit of a Superman curl on my forehead. I miss those curls!

My doctor has decided that we'll do my next scan at the beginning of March. At first I balked (he'd said February!) but then remembered that the end of February and the beginning of March are really not all that different. Plus it means that I can enjoy my end-of-February birthday without worrying about scan results...or at least not worrying *that* much. I think anyone who's ever had cancer is always a bit worried about scan results.

At my last appointment my doctor was happy with how my GvH looked externally. I still had small patches of very dry, scaly, red skin here and there as well as some irritated areas in my mouth, but overall it seemed under control. When my labs measuring my liver function came back normal I received a phone call telling me to take my Sirolimus dose down again! Now I am only taking a .5mg pill every other day. Since the goal is to get me off the Siro (my immuno-suppressant) all together, this was a step in the right direction. My GvH did flare, with my skin and mouth getting noticably (but not terribly) worse.

As we slowly back off of this medicine I think my body is finding a balance with the GvH. Each time my dose is decreased I notice a flare and some increased irritation, but then after a week or three it seems to go back to the acceptable level it was at. I may always have GvH irritation, but hopefully it is much more irritating to any cancer that tries growing back than it is to my skin! GvH is just my new donor immune system attacking my skin, liver, stomach, ect. So if it's doing what it's supposed to and attacking any upstart cancer then all the minor irritations will be worth it.

According to Plan...Well, this Latest Plan Anyways

It's come to my attention that when you keep a blog that's at least in part about you having cancer, people start to worry when it isn't updated for a couple months.

Sorry about that.

Things have been going the way we anticipated when I had my most recent bad scan in October. I did take the two additional Adcetris treatments. Those did take the cancer back down to undetectable amounts. I had a PET scan after the second treatment and it was clean, which again is what we thought would happen. The Adcetris has been amazing at temporarily eliminating the cancer, but it isn't going to keep it away long term.

Since that good scan I've moved forward with two more Adcetris treatments just for good measure (for a total of four since my October scan). I finished my (hopefully) last Adcetris treatment this past Friday. Sadly the Adcetris did make most of my brand-new post-transplant hair fall out. I hadn't had any hair loss with the Adcetris before transplant but I suppose since my body was already in a weakened state after the transplant it didn't take much to send those new hairs packing. Still, no cancer in my body > peach fuzz on my head.

The doctor has taken me off my original immuno-suppressants (tachrolimus and Cellcept) and put me on a different one called sirolimus. We are trying to reduce my dosage of that drug as well, but my GvH refuses to be completely controlled, so we're backing off very slowly. Put more simply, I need to stop taking these pills but when I do my skin gets itchy and scaly and my G.I. tract revolts.

With any luck we'll continue to reduce the immuno-suppressants to the point I can come off them altogether. Then my new, transplanted, German-donated immune system can full on attack any cancer that tries to come back. I won't have another scan until February, so until then cancer worries are on cruise control.

I'm going to take the time to revel in a few holidays...and a couple of birthdays. I'll wrap presents, dance to 80's music, ring in a new year, celebrate a special 30th birthday, and right around the time of my scan I'll turn 32. (I was 27 when I was diagnosed.) Maybe in my spare time I'll grow a little bit of hair.

"Cancer Wars, Episode 4: The Hodgkin's Menace"; or "It's Baaaaack"

Click here for the whole opening crawl: http://www.starwars.com/play/online-activities/crawl-creator/index.jsp?cs=uufqk8fsrv

Sometimes, especially after a trilogy, additional sequels are not welcomed.

That's certainly the case right now for me. After three bouts with cancer, and many more different kinds of treatments, I had hoped to have finished my Hodgkin's lymphoma saga. But no. We're all going to be treated to an unwanted new episode.

Yesterday I received the results from my most recent PET/CT scan. New cancerous lymph nodes are showing up. One area we had hoped was residual or inactive has increased in intensity (which means it's showing more cancerous activity). This is all bad news.

My doctor has a plan though. Up until now I've been taking a significant amount of immuno-suppresant medications to try and keep the graft versus host disease (GvH) under control. Though I'm still struggling with GvH, we're going to reduce the drugs keeping my shiny new immune system at bay and hope that it attacks the cancer at full force. (This also involves hoping that it doesn't attack my skin, mouth, eyes, or gastrointestinal system, but if it does there are alternative ways to treat that GvH.)

I'll also do another two rounds of Adcetris treatment, which will ideally quash what new bits of cancer have appeared. That is the same treatment I did in order to prepare for my most recent stem cell transplant (click here to read more about my first Adcetris treatment). It was insanely expensive, but had almost no side effects and completely eliminated the cancer. I'm hoping for a repeat performance.

So to sum up: dark and cancerous forces are again at work, but this battle is far from over.

When She Tries

As we were leaving a cross country race last week Brynn told me that she doesn't care about trying to get medals anymore. This was possibly spurred by not winning any medals yet this season. Of course I told her that I didn't care about what place she finished in or if she won a medal, as long as she tried her very best.

Then she said it. And it knocked me off my feet.

"I don't like running and I'm NOT going to do my best!"

Whoa there little lady. There are a great many things you can say to your mother, but "I will not try" is not one of them. For a moment I just looked at her in shock and disbelief. She had said it aloud, to my face, with no trace of trepidation or remorse.

Needless to say a brief but heated conversation ensued about expectations. She was still not willing to say she'd do her best at her next meet.

The frustrating part is, when Brynn *tries* she can do some really amazing things.

Last night Brynn needed to draw a picture for a fundraiser they're doing at school. (You parents know the one: "Here's a free tiny magnet/sticker of your child's artwork. Please buy $100+ of additional items with your precious offspring's talent plastered on it! Aprons! Coffee mugs! Bongs! If you'll pay money for it, we'll put that picture on ANYTHING!")

Well she devoted almost the whole night to it.

A shining moment when the overachiever genes beat back the slacker genes.

Now if I can just find a way to channel that effort into other activities, I'll be the happiest mom around.

Back to School, Back to Business

Today was Brynn's first day in the sixth grade. Much to her disappointment her new school continues to group 6th grade in with the elementary school, and she had been looking forward to officially being a middle schooler.

I knew she was at least a little nervous this morning because she asked me to walk inside with her. We've reached the stage where 85% of the time I'm an embarrassment, so her willingness to be seen with me was a sign that something wasn't sitting right with her. It could have been the fact that she'd forgotten how to get to her classroom or it could have just been first day jitters, but either way I was happy to escort her inside.

At first she stuck close by me, but then we bumped into the only other sixth grader Brynn knows at her new school (our neighbor). Immediately Brynn shifted her attention to her friend, but subtly looked over her shoulder and indicated she still wanted me to tag along. This lasted until we ended up in the cafeteria and the girls sat down at a table full of potential new friends. When I leaned over to tell Brynn where I'd be picking her up in the afternoon she looked at me like I had 3 heads. Like the lamest 3 headed monster ever. Time to go.

Thank goodness for school dress codes. I won't miss this summer's short-shorts.

This afternoon when I pulled up to the curb to pick Brynn up I was happy to see that she looked cheerful. Of course I asked how her first day was. Without missing a beat she replied, "It was good. There are two cute boys in my class."

Well, I'm glad all the important things fell into place.