Final Post

Friends,

This is Austin’s father, Carty.

We lost our beautiful son Austin to Acute Lymphoblastic Leukemia this past May 8th.

This blog was an enormously important source of inspiration and comfort for Austin, many of you have told us it was valuable for you as well.

Deb (his mom), Dylan (his brother), and I miss him terribly as you might imagine.

We’ll leave the blog up indefinitely and keep an eye on the comments.  You can reach us at <debra at roundpond dot net>, <carty at roundpond dot net>, and <dylan at roundpond dot net>.

Thanks for all your engagement and encoragement.  ALL is a nasty disease, there is a lot of work remaining to make progress toward a cure, if you are able – consider a donation to the The Leukemia & Lymphoma Society.

-C

 

Wake up, time to die.

With my counts continuing to sit at rock bottom with no change, my doctor decided to perform a bone marrow aspirate and biopsy yesterday. Not typical procedure in a patient still “recovering” from treatment, but given my cryptic leukemia, the fact that there was no detectable blast presence in my blood meant next to nothing. The only real way to figure out what was happening was to take a look inside the bones.

Preliminary results show a 95% presence of blasts (cancer cells) in my marrow. instead of the chemotherapy killing off the cancer and allowing my healthy immune system to move into the vacated space – the opposite happened, The cancer survived the attack but my cells didn’t, allowing the cancer free-reign to spread through the entirety of my skeletal structure.

I’m the process of setting up hospice care at home and expect to be discharged sometime in the next two or three days. I will try and contine to write  but can’t promise anything. I may not have much more than a few weeks left on this earth, I’ll be spending it with the people I love – doing the things I’ve missed.

Thank you all for everything you’ve given me on the way. All I can say is that despite my current condition, i’ve enjoyed a life with far more than most.

- Austin

Waiting

I’ve been an inpatient for four weeks now. In the past I always managed to recover quickly, in a lot of cases I was up and out of the hospital days even weeks before my doctors expected. Not true this time. It may be a testament to how intense my chemotherapy was this time around. I’ve asked my immune system to recover from so many devastating treatments at this point that it’s just not able to rebound as well as it used to.

Instead of watching my counts climb, I continue to need transfusions of red blood and platelets just about every day to keep me at safe levels. My white count has been non-existant since a day or two into the chemotherapy and it’s not budging. Optimistically – The treatment damaged the cancer cells as badly as it’s messed up my system. Pessimistically – My marrow can’t recover because cancer cells are still prevalent enough to be getting in the way. No way to know until the bone marrow biopsy and no biopsy until I have some counts.

Because I still have no white count I’ve been enjoying Typhlitis for the last two weeks. the specifics aren’t too interesting but the summary is: my intestines are inflamed and very painful and it keeps me nauseous almost constantly. Initially I was not even allowed to drink water in order to give my digestive tract rest. Thankfully my doctor took pity on me after a day and let me have clear liquids (water, jello, broth). You have no idea what a morale crusher it is when your doctor says you can’t drink a glass of water.

A few days after that I was upgraded to a “mechanical soft” diet which is where I remain today. I haven’t investigated (and won’t) but I think they essentially puree your food so you can drink it through a straw. I’ve survived on pudding, yogurt and my mother’s unbelievably tasty thick soups. The last few days though the typhlitis has flared up meaning more pain and more nausea. I’ve been forcing myself to eat at least a yogurt each day – 14g of protein and 20g of carbs. I figured out the other day that at my current weight, i’ve lost 70lbs since my diagnosis.

The amount of pain medication I need to take each day to dull my organ-throbbing aches puts me in a serious fog and (get this) makes me pretty nauseous to boot. Every time my head starts to clear a little bit and I feel ‘steady’ again it’s joined by a slow creep of the pain in my gut. I do have to give my doctors credit though, the medication does control the pain to the point where I can still shower, write when I can and sleep pretty well. For all the difficulties, my night sweats miraculously disappeared a few nights ago which is a blessing.

I have to mention my good friend Doug who has joined the Leukemia and Lymphoma Society’s Team In Training and while be biking 100 miles to support blood cancer research. He’s off to a great start training and any support you can provide would be appreciated.

Doug’s TNT page

 

- Austin

Another Relapse

I’ve been trying for some time to write a post though I’m having a hard time finding the energy. I just want to bring everything up-to-date.

A little over three weeks ago I began experiencing bone-pain in my left collar bone. It was not as sudden or intolerable as my previous relapse so I went to see my doctor on a Monday hoping to find another explanation for the pain. My doctor immediately stopped my participation in the drug trial (which had seemed like a miracle cure for my cancer) and told me to come back in if things got any worse. They took some blood and said they’d let me know if anything came up.

Tuesday the pain remained and I just went to work. I wanted to believe (again) it would go away and just wanted to go to work and have my life. After work that day watching TV with a friend it was obvious that the pain was only getting worse. That night I packed up my things and my family gave me a ride into the Emergency Department.

I don’t remember what the numbers were but there was a significant cancer presence in my marrow again. As magical as the Ponatinib had seemed, at least one of the mutations of my cancer was not treated by it and after about 3 months of some of the best health I’ve had since I was diagnosed – I began chemotherapy again.

Before getting into the drug trial, my previous oncologist had told me back in December that I didn’t have any more treatment options to pursue and I should look into hospice care. I’m across the street from my old hospital now (I swear, you can almost see the building from this hospital) and with a new oncologist who presented me with a chemotherapy option. It still blows my mind that simply talking to a different doctor and your treatment options can change drastically.

Admittedly the chemotherapy I started three weeks ago (from what I can tell) is not widely used. Cytarabine is a very common chemotherapy agent, I believe it was part of my induction therapy when I first got sick. Whats non-standard about this treatment is the extremely high dose I received – and it was every 12 hours. This was also combined with another drug which I just can’t seem to remember right now. Therapy this intense is typically only used for patients who don’t have other options at their disposal. Reading some of the published studies on high-dose ARC shows that more often than other treatments patients actually die from the intensity of the treatment.

Again, a patient most likely doesn’t enter into a regimen like this unless they’re critically ill and have already undergone many other failed treatments. I suppose thats an accurate description of my position. My doctor is pinning his hopes on the chance that this earth-shattering chemotherapy is what my body needs to finally push this cancer into remission and keep it there. The reality is if this chemotherapy does any less than cure me, I don’t have much in the way of treatment options left.

I’m still recovering in the hospital and in another week or two (assuming my counts recover, which is taking a notably long time) my doctors will take a bone marrow biopsy and we’ll be able to see how effective the chemotherapy has been. If the cancer is still present or comes back, the only other option is a second bone marrow transplant from a new donor. Aside from the difficulties in finding a donor, the first transplant I had was the worst experience of my life and physically traumatic in ways I can’t even describe. Given I already have two sets of DNA coursing through my immune system, adding a third only increases the risks and severity of side-effects. It would be a uniquely painful way to die. Never mind the success rates for patients on their second transplant are dismal.

In short – I’m not in great spirits. As always with this disease I don’t know any more than anyone else about whether or not this chemotherapy will work. It’s certainly helped others so theres a chance I could be among the lucky ones. But outside of hoping theres not much more I can do. A second transplant doesn’t seem like a viable option to me. I don’t want to die in a hospital. Completely physically shattered and dreading every day I’m awake until I get an infection that kills me. Just going through chemotherapy this time (and 5 days of constant fevers from a gut infection) I was driven to tears more than once. I’d much rather die at home with a modicum of comfort and with the people I love.

It’s been something like 15 months I’ve been in treatment and I’ve had more than one occasion where I really thought I’d beaten it. I’ve had the benefit of some of the best hospitals and treatments in the world and access to drugs that ordinarily would be out of a persons reach. I’ve fought hard and come very close but in the end I’m not sure this is a war I’m going to win.

- Austin

LTA (Lighter Than Air)

More than one person has asked me to write about my life outside of my illness. No. Or, not really. Thats some other blog. I’ll do highlights though:

  • I drink orange juice out of the container. No, I will not stop. No, it’s not worth discussing.
  • When I’m on the T, I stand in front of the door. Even when there’s a seat open.
  • I can recite the entire WBUR call-sign from memory (and the previous one before they switched it up 3 years ago).
  • I talk to dogs. Hell, I guess I talk to computers.
  • I’ve been in the bed of a dump trunk that was filled with enough pickled herring I could’ve drowned in it.
  • I use words like “shitstorm” and “clusterfuck” probably more often than is socially acceptable.
  • I would accept a baby bear or moose as a pet without a second thought.
  • It amazes me people on Jeopardy take Trebek’s shit.

 

Pretty standard stuff…

- A

Ponatinib

The only option I had left was a phase 2 study being done in a hospital across the street from where I’d been receiving treatment for the last year. I was not the slightest bit excited about meeting new doctors, never mind new hospital administration. When I was first diagnosed the course of chemotherapy I took was part of drug trial – (getting extremely intense regimens of chemotherapy normally only used on pediatric patients. Older patients often can’t withstand such intense treatment but ‘older’ usually means about 80.)

Drug trials can get you access to cutting edge treatments, especially in Boston. Sometimes it also means far more painful procedures (bone marrow biopsies, spinal taps, voluminous blood draws, etc…) than you would be subjected to otherwise. Some patients forgo traditional treatment to get into a drug trial only to get a placebo. Dose escalation studies essentially knowingly over- and under-medicate a large percentage of the patients in order to zero in on the most effective dosage.

That said, I chose drug trials and experimental treatment every time I had the chance – four or five times so far by my count. There’s certainly an added suck factor but the potential upside is hard to resist. Even if it isn’t effective in your case, that acquired medical knowledge will help the entire cancer community. I’ve heard the same thing from so many other people I met in studies – when you’re that sick, doing something helpful with the time you have left seems like one of the last decisions you have the power to make.

It was pretty clear this trial was a long-shot. I managed to dig up some of the phase 1 study prelim data, some patients lived a little longer than expected but everyone still died before the end of the study. All of the BS that came along with these drug trials just didn’t seem worth it anymore. I just wanted to be comfortable and die in my own home.

I only agreed to do the study for my family. All I saw was more pain and discomfort until my inevitable death. Why should I spend what little time I have left sick as hell and on chemo? I’d done plenty for research, I should be able to have a few weeks at home and die comfortable in my kick-ass bed. Even after agreeing to do the study I told all of my family members more than once not get their hopes up – I didn’t want to watch my family have to accept all over again in a few weeks that I was still going to die.

The new drug trial was at the Dana Farber Cancer Institute. I spent a good week just answering questions, signing paperwork, giving blood, getting marrow stolen. The requirements for this study were extremely specific – I have an extremely acute and active form of ALL, I’m Ph+ and i’d unsuccessfully already completed treatment with the top 4 tyrosine-kinase inhibitors available. Because it was a new hopsital they wanted all new samples and their own test results. There’s a very common test used to determine whether a patient is Ph+, other methods are more reliable but also much (much) more expensive. I’d go into specifics but I’d probably get a bunch of it wrong.

Long story short all my tests came back as cancer-y as expected, expected for the one that shows I’m Ph+. Consequently when I showed up for my first dose I was told I’d been rejected from the study because my cancer wasn’t badass enough if I wasn’t Ph+. What sucked was everyone knew the test was a false negative, it’s called ‘cryptic leukemia,’ and it’s known to return false negatives on that exact test.

The company running the trial is tiny in drug company standards. This is the second of only 2 drugs they’ve developed to date. This study is an attempt to get this drug FDA approved for use on humans and as a result the methodology is extremely strict. Everything will be picked apart by the feds when the study concludes and they apply for approval. They refused to accept any other proof that I was Ph+ except for the test called for in the study. My new team of doctors said all they could do was give me another bone marrow biopsy and hope these results came back positive. I’m going to die in a matter of weeks from leukemia but they’re telling me i’m not cancer-y enough to take their drug.

As luck would have it I just reached the lower threshold to be considered Ph+ on the second test and I was accepted a few days late into the study. I had ~ 3 weeks to live. That was 2 and a half months ago.

- Austin

Yeah, F*ck February!

I took a quick glance over my old posts and saw the title “It’s really February?” I remember writing that and being amazed that my body was able to survive through treatment as long as it had… so… now we all know how I feel about that.

I’ve lost anything approaching continuity at this point but I’m not sure the tiny details are all that important anyway. I’ll have to write a full update in post-sized chunks so bear with me. Last time I wrote I had just relapsed (again) and returned to the hospital for in-patient treatment. The plan was to tolerate about a month of chemotherapy (high-dose Methotrexate) and when I achieved remission again we would perform a DLI (Donor Lymphocyte Infusion) to give the transplant a boost. Hopefully that would be enough to help my new immune system take hold and kill the cancer.

Before doing the DLI my doctors took a bone marrow biopsy to verify I was in remission and eligible for the procedure. I was feeling well, looked healthy, my blood counts were in a good place (for a terminal leukemia patient) and my blood showed no presence of blasts (cancer cells). Instead of confirming that I was in remission, the biopsy showed approximately a 90% cancer presence in my marrow. The treatment had barely affected the cancer if at all.

Close to Christmas 2010 and my one year anniversary of diagnosis – my doctors told me I had at best a month to live. Because the chemotherapy was no longer effective, I couldn’t achieve remission and the DLI was not an option. My doctors directed me to an associate at Dana Farber here in Boston who was about to begin enrolling ALL patients in a non-FDA approved drug study. They wanted patients who hadn’t had success with the top 4 most used Tyrosine-Kinase Inhibitors and were in ‘blast-crisis’ – a perfect description of me. They also advised me to look into hospice care.

It was pretty obvious that this drug trial was an extreme longshot. The drug wasn’t FDA approved for human use yet and had only gone through a single Phase 1 study where all the ALL patients died within 6 months. Sweet. Keep in mind I found that article on my own, not exactly encouraging.

At this point my life was comprised entirely of cancer or cancer treatment – part of me was relieved to have an end in sight. Granted, not the end I was shooting for but I learned a while ago that it just wasn’t always up to me. My family was pushing for the drug trial but I just wanted to go home, eat my weight in Oxycontin and let the cancer kill me. At least there wouldn’t be all the needles, biopsies, drugs, vital checks, blah blah blah blah.

Up until this point I’d had a really hard time including my friends in what was happening to me. I’m sure to them it seemed like sometimes I’d call and things would be going great then next time we talked I was about to die again. When it finally came time to tell everyone I only had a few weeks left, It was probably harder than telling everyone when I was diagnosed in the first place. I didn’t want everyone to come running home just to see me die. But what kind of asshole just dies and doesn’t even let anybody know first, right?

The day I found out I barely even talked to my family. One of the social workers did a good job of stealthily making sure my family would all be at the hospital when they told me I was going to die. For most of the next two days I didn’t tell anyone or spend much time talking about it. When I was diagnosed it simply gave a name to somehing that I already knew was seriously wrong – one second I was just oddly ill and the next I had leukemia. But when you feel healthier than you have in a long time and someone tells you you’re actually about to die it takes a while to sink in.

The timing meant that I’d most likely be dead before Christmas so I found that was the easiest way to explain things. Medically it really wasn’t any more complicated than, “chemo doesn’t work anymore, cancer will consume me,” and I bet I came off as pretty cold to most people. I just didn’t have the energy to spend on it at that point. Fighting cancer when you still think you have a chance is like some kind of sustained adrenaline release that keeps on giving every time the disease slaps you in the face with something new. Brain nodules? Fine, nuke my head. Another month of chemo? Sure, I’ve done it 12 times already. Once you know you’re going to lose, that energy just disappears and you feel the entirety of what you’ve been through hit you all at once.

It sucked, but for anybody keeping score my life had become some sort of cosmic “kick Austin in the dick” contest for some Gods with a mean sense of humor. I was mostly just concerned with how I would die. Ever think of that? I didn’t want one of those gasping-for-air deaths. It seemed the consensus in the killing-yourself community was sleeping pills and damn did I have plenty of those. It was just a matter of time until I lost any quality of life and wouldn’t want to go on.

- Austin

Relapse

Another 3 months since my last post, that seems to be my schedule for the time being. I always noticed that other bloggers tended to fall off the face of the earth when they get released or begin a less intense phase of treatment. In my case I just didn’t see the use in ruminating about my treatment when I had the opportunity to focus on something else entirely. Once I started it became difficult to sit down and start writing again.

I suppose the most significant thing that’s happened since I wrote last was my relapse. About a week after my post on 8/10 I drove myself to the hospital in so much pain I screamed loudly enough to frighten other drivers in traffic. It turns out there were cancerous white blood cells bursting from the vertebrae in my lower back. When I finally got to the emergency room there were 3 people ahead of me and I was told i’d have to wait. Pouring sweat and trembling from the pain – I made quite a scene. I’m not sure how other people handle a situation like that. You must be out of your mind to want to work in an ER.

I was in the hospital for a month after that for another round of induction chemotherapy to try and knock the recurrent cancer into remission. It turns out it was actually not the same cancer I already beat but a new mutation. I guess that’s common with ALL.

Induction was just about as unpleasant as I remember. When I ended up back in the ER it was soul crushing. Everything had been going so well and almost over night everything came crashing to a halt and I was back to square one. Even though I’d had an incredibly short experience in treatment compared to what many people have to endure but I’d really expected the transplant to work. It was a low point which I am still finding my way back up from.

As with my first round of treatment, I responded very well to the chemotherapy and went back into remission relatively quickly. (as is detectable in my blood anyway, everything short of a marrow biopsy) Sometime during treatment for my relapse I began losing feeling in my fingers on both hands and experienced a very curious tingling down each of my arms. An MRI showed a slipped disc in my spine which was impinging on a bundle of nerves that was causing the loss of sensation in my extremities. On a whim the attending on service had decided to also get a shot of my brain while I was in the machine – while no one was really expecting anything the image showed several visible nodules on my brain which my doctor figured was residual cancer cells. Besides the image I thankfully never experienced any neurological symptoms.

Since then I’ve continued to remain in remission and in 3 days will begin the last stage of chemotherapy meant to treat to the nodules in my brain. I had a followup MRI two weeks ago which showed the nodules have disappeared completely – good in that there gone but a little disturbing because we were never sure of what it was or why it happened in the first place.

Once this last round is done and i’ve had a few weeks to recover my doctor wants to do a DLI or Donor Lymphocyte Infusion – a transfer of white blood cells from my donor (my little brother) to me to try and give my transplanted immune system a big boost to fight the cancer still in my bones. Since the transplant wasn’t able to prevent my relapse before, this is essentially my last chance to salvage all the work put into the transplant all those months. And one of my last real chances at a cure.

While a relapse was obviously always a real concern, id spent so much time focused on treatment and doing everything right that I never even had a chance to start healing and having a life again before i ended up back at the very bottom and quarantined in the hospital. I’ve been in a pretty dark place ever since. If that went so poorly, why would I have any faith in an even less proven treatment?

Even though I haven’t been as present as I would like on this blog over the last few months I have gotten some very supportive comments and emails from students, techs, nurses, doctors, patients, family members and friends – Thank you all for your kind words.

- Austin

Still Not Dead

Alive

Very much alive in fact. More than 4 months since my last post and what seems like a lifetime ago at this point. I was released from the hospital on April 26th 2010, as an outpatient I came back to the hospital every single morning to get checked out. My mother moved into my apartment and took care of me, as I wasn’t allowed to cook, clean, shop, leave my apartment, etc… I was a frail shell of a human being anyway – eating so many pills every few hours it would scare a junkie.

As the weeks went on I got my strength back, Dylan’s graft took hold all up inside my bones, my numbers slowly rose and I started breaking restrictions my doctors had given as I wanted. As always there were problems, some pneumonia, GVH, fungal infections, blah, blah, blah. In the end I was only re-admitted two separate times (I think?) and once was because I made a scene and my doctors were convinced I was having some sort of a psychotic break and I needed to be supervised. Who knows where they got that.

It’s been months and every day I still wake up in pain. My feet, head, gut, joints, bones. At some point you just get used to your body fighting you, like some sort of sick endurance test no one asked you about. Getting through each day is like swimming out to sea with the tide – how far can you push it and still get back to shore? Thanks to some of the drugs i’m still taking my muscles have a terrible time maintaining muscle mass so I can only get so strong.

Side Note: Someone threatened to “put me back in the hospital” yesterday. what kind of hateful shit is that? People are awful. Anyone who knows me knows I’m not the kind of person to fight you. I hope you’re not someone who threatens recovering cancer patients.

Somewhere around the beginning of July my mother moved out of my apartment and I was downgraded to appointments at the hospital once or twice a week. I still had many if not all the same restrictions but I was not paying attention to any but to the most obviously hygienic ones at this point. I embodied what my doctor called a non-compliant outpatient – though I’d gotten very talented at manipulating the system to keep everyone “off my back” as I saw it. Not the right way to approach a team of doctors trying to save your life, but hey, not dead, right?

One of the transplant coordinators made a comment to me before I ever had the transplant when we were going over restrictions and the associated dangers of not having an immune system - paraphrased: ‘This entire operation is to provide you with the chance to live your life, you’re going to need to decide at some point what that means. You need to make safe choices but it’s all a quality of life decision for you at this point as well.’

Quality

I’m Bipolar. When I was diagnosed in December my medication was one of the things that went right out the window. It took me two years after finally accepting medication to get my shit together and apparently it was the single worst thing in the world for someone with blood cancer to be taking. After a lifetime of trying to live inside my own head, I’d accepted the crutch of medication – only to have it kicked out from under me.

The steroids I’ve been on since my diagnosis could send a balanced person into a mood disorder, for someone in my condition it simply brings it to a whole new level. I know it’s not anyone’s fault I’m sick and I can’t blame them for putting me on medication I’ll never be able to take, but how can they expect me to embrace their suggestions and treatment again? I’ve experienced holes so deep and dark I understand for the first time what it feels like to truly want to die. On the up swings I’ve had to stop myself on occasion from flying across the country or moving to a different state on a whim.

After having what I’ll call a ‘less than satisfactory’ interaction with a doctor who was apparently the most qualified and talented psychologist on staff at the hospital – two other doctors summarily refused to treat me because – get this – I had cancer.

Yeah. God knows why that would make someone feel like an outsider. Oh, no thanks, I don’t want to explain to you that after I spent all that time and energy trying not to die, sometimes all I can think about is why in the world didn’t I just let the cancer swallow me alive? You’re scared of my disease, how can you possibly understand the anger and hate I feel? I can’t even figure out where it comes from. It’s not that i’m not grateful to be alive, I am. Ever feel like you don’t deserve it though? Your own life? It’s an empty that doesn’t go away.

There’s so much guilt – why aren’t you more grateful? Why aren’t you happier to be alive?

I don’t know.

In the end I have to learn to live in my head, same as everyone else.

Life

People want to know what changes about a person, coming out of an experience like I had in the hospital. The only tangible regret I can remember is that I spent so much time in my life looking for reasons not to do things. I don’t need to do anything and everything but I wanted to make different decisions – for different reasons. If my doctors had even an inkling of what I’ve been doing I’d never be allowed back in the hospital again. Cross country road trips, three day music festivals in the woods, clubs, bars, Sox games, etc …

They locked a 23-year-old in a cage and told him he might die and never get out ever again. Again, anyone who knew me when I was younger… I’m free and as far as I’m concerned I’ve got a license to die. Not that I’m going to, I worked damn hard not to – but goddamn if that isn’t my prerogative now.

I have these moments every once-in-a-while when I see a couple kissing or beautiful clouds over some scenery and all I can think is “still not dead” – nice try and all but I’ll die when I please.

- Austin

Restrictions Apply

It turns out my approximated transplant schedule in my previous post was fairly accurate. I was admitted on Friday, March 19th for an Allogeneic Hematopoietic Stem Cell Transplant. That evening I had two lines surgically inserted 1) a ‘temporary’ central line on the left of my neck that will remain for my stay here at the hospital 2) A tunneled line under my right clavicle which I will have for the next 6 months or so. When they say ‘tunneled’ they mean it – the line is actually forced into muscular tissue which then heals over a cuff on the line to give it a firm hold. The idea is to keep me from accidentally tearing the thing out of my chest when I leave the hospital by forcing my body to absorb the damn thing. Not my favorite procedure I’ve ever been awake for. That gives me a total of six (count ‘em baby!) lumens to hook up IVs – I’m currently only using four…

That Saturday and Sunday I spent receiving doses of a chemotherapy agent called Cytoxin designed to simply gore my bone marrow before the transplant. I’ve hated chemotherapy before but this stuff is in it’s own league, I was nauseous in ways I thought were reserved for at least the seventh circle of hell. Fun fact: Since you can’t hold down food, when you vomit you can tell from how far down the bile is coming up by how green it is!

On Monday I was still firmly under the grasp of Cytoxin and I began my Total Body Irradiation treatments. Twice a day for four days I received radiation treatments. The lab is in the basement of the hospital and the actual room I was in had one of those 3-foot thick metal doors that you only see in bomb shelters or bank vaults. I probably would have been safe from a nuclear blast in there – too bad I was being pre-irradiated. The radiation caused nausea of its own, destroyed the lining of my stomach and intestines, irritated and cracked my skin and thankfully caused such severe fatigue that I slept for most of those four days. Needless to say I was not a pretty sight after all this. Because the radiation needs to be able to properly penetrate your skin in order to cook your bones and organs I wasn’t allowed to wear any kind of skin lotion or deodorant, so for kicks I just smell.

On Thursday, March 25th I received my last radiation treatment and was ready to receive the stem cells my brother was so generously willing to donate. The poor kid spent something like 12 hours over the course of two days hooked up to a pheresis machine in order to provide me with almost 5 million stem cells. The transplant itself was uneventful and my body took the cells without any reaction.

And so I was re-born. a re-birthday if you will. Thanks D.

Today is day +4 on my transplant schedule and i’m just beginning to feel the effects of Dylan’s cells taking hold in my body. My bones feel like they have angry little creatures living inside them and they want out. I can only imagine this is how you feel when you regain consciousness after being hit by a bus. The pain and side effects (mostly more mucositis and mouth sores) should continue to get worse through ~ day +10 as the cells graft to my bones. This morning my doctors were nice enough to give me a PCA with Fentanyl – this stuff makes morphine seem like aspirin.

Now I hang out in my bubble until I have an immune system to speak of again, with any luck it should only be a matter of weeks before I can continue to recover as an outpatient and go home. At least my bubble has a view.

- Austin