Some Overdue Good News

Usually I'm scheduled for a PET/CT scan every 3 months. The scan checks to see if there's any "hypermetabolic activity" in my body. Because cancer cells reproduce quickly they metabolize sugars quickly. Prior to being scanned I'm given an injection of radioactive sugar and then left to brew for about an hour. The scanner picks up areas where the sugar is being absorbed and metabolized quickly, and so with this test "hypermetabolic activity" means cancer.

Three months is a good span of time between scans because it allows enough time for changes to occur (cancer doesn't grow to detectable levels overnight) but doesn't allow so much time that the cancer could get out of control. It's a waiting period that I feel comfortable with...but my last scan was at the end of February.

With my recent hospitalization, followed by physical therapy, we put my scan off for two months longer than usual. Not that I forgot about it. I probably asked my doctor once a week since mid-May when we'd be doing the scan. He explained (reasonably) that I was *so* sick for those two extra months, even if I'd had a scan showing cancer we wouldn't be able to put my body through any sort of treatment.

Yesterday I finally had my scan.

Special parking for $1,000+ procedures

It was the same test I've been through countless times. I was worried. I always worry, but at this point my further treatment options are limited so a bad scan would be devastating news. And I've been taking immuno-suppressants which reduce my immune system's ability to do anything, including fight off any new cancer.

When the doctor came into my room today and reported the scan showed no disease I didn't even react immediately. There were so many reasons to worry the cancer might be back, I hadn't planned for such great news. According to the official interpretation of the scan there's "No evidence of hypermetabolic adenopathy in the neck, chest, abdomen, or pelvis." No cancer!

Baby Steps

Many of you already know I've been in the hospital. I checked in with swollen arms and sore muscles, thinking I was in for a 1-3 day stay and a muscle biopsy. I kept thinking I was just about to turn the corner and things were going to improve. Turns out that, per the adage, things got worse before they got better. I ended up in the ICU for almost 2 weeks. The doctors drained fluid from around my heart, then fluid from around each of my lungs. They did quite a few other things too, but my oxygen and carbon dioxide were out of whack and I don't remember a good portion of my time there, just fragments. I know I was hallucinating. I went into irregular heart rhythms. I had afeeding tube. I was on a breathing machine. Things got ugly and part of me is relieved that I don't remember it.

When I was moved out of the ICU to a regular room physical therapy began seeing me. We realized I couldn't stand up without someone helping me up. Once I was standing I could stand with a walker for just a handful of seconds. When I tried taking steps I could only take 5-10. My time off my feet combined with the muscle issues I had, resulting in so much weakness that even texting on my phone was too exhausting.

Late this past Thursday afternoon I was discharged from the hospital and moved to a physical therapy rehab facility. Friday they evaluated my abilities and I was able to complete one 45 minute session of actual physical therapy. Here the day is structured so you're awoken around 5:45 or 6a to get on the scale and take some early medicines. Breakfast comes between 7 and 7:30a and therapies start as early as 8a. Not the best schedule for a night owl like me! It's worth it though. I've walked a little further every day and I know my arms are much stronger as well. In the ICU my arms were barely strong enough to feed myself or lift my cell phone, now I'm able to push myself in the wheelchair a bit and lift my laptop. Today I walked 400' with a walker and then 90' unassisted (no walker, no rails). I also walked up 4 little stairs, down 2 regular stairs and a small step, then turned around and went up the regular step side and down the small step side, then, for good measure, did the small step side one more time. I did use the rails a lot on the stairs.

So the news is I'm weak but getting stronger. They're hoping to send me home on July 3rd. Then I'll be adjusting to life at home with the physical restrictions I have. I'm excited to see how much progress I'll make by the 3rd. Everything happens in baby steps, but when you take enough baby steps you can really get somewhere.

The Third Line's a Charm

In just a few hours after writing this post I will be laying under a surgeon's knife, having not my first...not my second...but my third tunneled catheter installed in my chest (and that's not even including the port I also had at one time). You can click here to read about my first "tails" or here to see a picture of the second line...or even here to remember how excited I was when the last catheter was removed. Alas, my days of no open wounds and smooth lying tops are about to come to an end again.

The line is a tube that runs into my chest and into one of the main veins connecting to my heart. Here's a helpful diagram:

And here's a song called "Heart on a String" just for the occasion: click here

As opposed to the diagram, my line will have 3 tails at the end, similar to the devices I've had previously. The multiple tails allow the medical staff to have me hooked into a variety of processes all at once. And they just hang down directly out of my chest. Dangling. Creepily. Asking to get infected. Caring for a line is serious business because it opens your body up to infections, but I'm getting to be a semi-pro at this.

"Why?!?" you ask. "Why have this anxiety-inducing, infection-prone, eye sore installed in your chest?" Well, it's a great question and the answer, in a round about way, is buffalo chicken dip.

You see, my graft vs. host disease (GvH) has been flaring up for over a month now. This is when my new donor-given immune system sees the normal parts of my body and "rejects" them as foreign and attacks them. Recently it has effected my scalp, eyes, mouth, skin, and stomach in ways I do not appreciate. My doctor prescribed steroids and put me back on one, then two, immuno-suppressants. Both were a regressive step and I was especially upset at the immuno-suppressants because they will prevent the donor immune system from also fending off any potential new cancer. An even bigger problem is that those drugs didn't simply melt the GvH away.

The doctor told me if there wasn't some concern that the cancer could come back, we'd just amp up the steroids and immuno-suppressants until the GvH disappeared, but there is that worry. So rather than risk leaving my defenses completely compromised we're going to try a rather cutting edge procedure for treating GvH called extracorporeal photopheresis (ECP). Doesn't it just sound expensive?

During ECP one of my new tails will be connected to a machine that will take some of my blood and do magically scientific things to it. More specifically, it will separate out my white blood cells, expose then to a medicine that makes them more sensitive to UV light, then expose them to UV light which will kill some of those undesirable cells causing the GvH, then put the white cells back in with the red, and finally return the blood back to me through a second tail hooked to the machine.

Each round of ECP should take about an hour and a half. Plus the hour round trip drive to the doctor. I will have to go for the procedure twice a week, probably for several months. Like a mini-dialysis routine.

But the payoff comes with Frank's Red Hot. The grown up in me knows this procedure (the tails, the ECP, the whole 9 yards) is necessary so the GvH doesn't continue to attack my body. Beyond my eyes and skin, GvH could also attack my liver or other organs, so it's critical to keep it under control. Many transplant patients die, not from cancer or transplant, but from GvH. But I'll be honest, that's a hollow shell of a responsible person talking. When I go under the knife tomorrow I will be thinking of all the amazing, spicy, flavorful things I'm going to eat when this GvH goes away. Right now my mouth is raw and sore inside. I'm eating very bland foods like mashed potatoes and baked chicken. Which is all well and good.

But did I mention I'm still on the steroids? And steroids make you feel hungry pretty much 100% of the time. Peckish at the very least. So I'm always hungry but can't ever eat very much (even the bland stuff winds up hurting fairly quickly). And so I'll boldy look this latest procedure in the face and say "bring it on..." with a side of salt and vinegar chips, and buffalo chicken strips, and a giant lemonade.

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.