Pardon Me

I’m almost tired of saying it – another day waiting for my white blood cell counts to rebound before I qualify for the tests I need. There’s a complicated calculation involving several different kinds of my white blood cells – which can only be done by a trained wizard – which needs to equal 1000. Saturday was the last official day of the induction phase of my chemotherapy and the first day I could have potentially qualified for the tests to confirm i’m in remission. My numbers from the wizard himself:

Sat: 320

Sun: 800

Mon: 920

So, progress. I was under the impression I was right on the edge of the numbers I needed on Saturday – clearly I was confused. My white blood cells suck, lately they’re either giving me cancer or not showing up to the party when I need them for stuff. I guess it’s been a pretty tough month for them too though.

It turns out I was wrong about getting my primary physician back on rotation on the HEMONC unit this week, though so far I’m a fan of this week’s attending – he’s very straightforward, I think we’ll get along well. He discontinued one of my two regular courses of antibiotics now that it’s been 2 weeks since I spiked a fever, how can I not like the guy? Fewer antibiotics gets me closer to being an outpatient and it’s a tacit nod to my immune system (which no one around here trusts anymore). I think coming off the corticosteroids (AKA – immuno-suppressants) might have something to do with it as well.

I’ve heard the term “emotional roller coaster” from doctors more times than I care to admit since being diagnosed, only a month in though it seems more apt a term than ever. It occurred to me today cancer provides a unique opportunity to truly “live in the moment,” something I’ve always tried to do to begin with. Though it’s almost against one’s will because what the hell else are you going to do? I’ve been trying out the control-every-aspect-of-your-life approach and it’s simply draining. And impossible.

I still haven’t quite gotten my head around the idea that there will never be an explanation for how I got Leukemia. I don’t spend any more time around benzene than the next guy and I’ve never hung out at Chernoybl or Hiroshima. Most likely sometime in October 2009 something happened to a single strand of DNA in my marrow and my body started churning out lymphoblasts. Not that i’m owed an explanation I suppose – I did always love the quote “it is what it is.”

Besides, things are different now. From my window you can see the helipad on top of Mass. General – each time they land a team of at least four people rushing to transport whoever needed to be airlifted to safety. The patient one room over from me needs to have his airway cleared with suction on a regular basis because his lungs are filling with fluid. Three weeks ago I was convinced I was going to die. Hell, a week ago I was still on a morphine drip I was in so much pain. There’s an intersection outside my window and I’ll watch the lights change and the pedestrians go about their day for hours.

I can’t forget to where I’m going, if I do, how will I know when I’m there?

– Austin

It’s Really February?

Started the day off with some magnesium via IV and oral potassium supplements (These things are comically large), nothing all that interesting. I’ve never really delved into what it is about my treatment (or disease) that causes me to run low on those two elements so consistently. I’m holding myself back from jumping all over the staff about what my white blood cell count came back as from the midnight labs – I figure I can wait until 7am and harass the day shift instead. If I’ve finally hit the numbers I need I just want to get stabbed as soon as possible and give them all day to start running their tests. Not that I get to decide what the doctors do or when, or anything even approaching it.

My night sweats are back in force after last night too – probably why I’m so awake at 5am again. Even when you’re exhausted, if you expect to wake up sopping wet in just 45 minutes, sleep loses its allure. I’ve been having fantasies about my bed back home, my ridiculously comfortable and numerous pillows, a porch door I can open at night… Even if it turns out to be a few months before I get a chance to go home it’s going to be quite an experience that first night. I’m planning on a marathon of sleep starting with a straight 12 hours – no IVs, pills, blood draws, vitals – just sweet merciful sleep.

Another Monday means another rotation of the doctors on the unit for a week, with any luck since I’ve been here 5 straight weeks I’ve already met all the attendings – this week my primary doctor should be back on the unit and I’ll (hopefully) be able to get some real answers about the viability of doing the next phase of my treatment as an outpatient. Even if that goes well though I won’t even know until at least Wednesday – I’ve really got to find a way to relax. When I came onto the HEMONC unit there were so many unknowns about my disease and treatment it was easy to take it day-by-day because there just wasn’t enough information to look all that far into the future. Now the potential paths for my treatment are fairly well defined and I’m driving myself crazy wanting to hurry up and get it done. A good problem to have all things considered.

– Austin

Day 34

Another day without my tests completed – I got the impression that it was Sunday and no one felt like going through the motions of actually doing the procedure. Being a weekend the people I need to actually process my marrow are no where to be found so whats the rush? At this point I’m just tired of anticipating it – I’m anxious to figure out if my marrow is clean of Leukemia and if I get to go home. “Probably tomorrow” … we’ll see.

They weren’t kidding around about the mood swings coming off Prednisone. If you brought me the cutest puppy to ever grace this earth I’d find a way to hate it in about four seconds. I’m sure part of it is just being cooped up in a hospital for so long but today at noon I was still relatively pleasant, now I just want to physically harm anyone that walks into my room. It’s a little odd knowing that its most likely just a reaction to medication and not something I really have any control over for the time being. I should get a muzzle or something.

I’ve concluded that the nurses are using me for all the teaching cases because relative to the rest of the HEMONC unit i’m fairly healthy and in good spirits at the moment. Today I had an RN in training try to flush one of the feeds into my central line with saline and heparin while it was closed off. It’s got to be stressful performing any kind of nursely duty on a sick patient for the first time. I’m more convinced than ever that to be in the healthcare industry in any capacity (especially a nurse) you’ve either got to want to do it more than anything or be utterly out of your mind.

– Austin

Delay

So after all that I never had my procedures done yesterday – My numbers are right on the cusp for meeting the criterion for remission and they don’t want to have to redo painful procedures if my blood counts dip a little (which they often do) before the bone marrow results come back. In the drug trial I have a three day window starting yesterday to get the tests done and still move forward on the same schedule. It still doesn’t sound like they expect any issues, they’re just hedging their bets – my counts will probably be better in a day or two so why not wait? It’s the weekend anyway, I wouldn’t get the results back any sooner had they done it yesterday.

I’m not sure why I’m so anxious to have it done, there’s no pleasant way to collect bone marrow and once it’s done they’re going to give me intrathecal chemotherapy as well. Not exactly something to look forward to, then I just get to be ill again and wait a few more days for the results to come back. I suppose it’s just frustrating not knowing when it will happen until the doctors walk in the door and say “maybe tomorrow, we’ll see…” I’ve been here 34 days now and my primary physician said the word ‘outpatient’ for the first time the other day. I’d consigned myself to the fact that if I’m lucky enough to go straight to transplant the very earliest I’d step foot outside this hospital was sometime in April. The prospect of even a week at home sleeping in my bed and spending time with my family is intoxicating. But, this is me not obsessing over it – can you tell?

I did take my very last dose of Prednisone yesterday at 2pm which should make for an interesting next few days. Pred is a corticosteroid which I’ve been on super-high doses of twice a day since I arrived to suppress my immune system so we can kill it with chemo. There are a lot of pain-in-the-ass side effects (like causing drug-induced diabetes for one) but it also gives you a ton of energy, improves your mood, can help with focus and concentration, gives you an incredible appetite and can cause sustained euphoria. The problem is after only a couple days of such high doses your body just gives up on making it’s own corticosteroids – your adrenal gland shuts down because someone else is doing all the work for it. So today at 7:00 am (now?) when I don’t take my usual dose my body is going to begin to lose all these wonderful corticosteroids I’ve been pumping into it and it’ll take a little while for my adrenal gland to wake up again. I won’t be diabetic anymore and I should be able to sleep better but I’ll probably want to rip someone’s face off if they look at me the wrong way too.

Even if it’s slower than I’d like it’s all still progress. God knows it could probably never happen fast enough to satisfy me. I’ve got to remember this is only the very beginning of a long course of treatment (if not for the rest of my life) which is guaranteed to suck so very badly at points – I should be grateful for all the ways it’s going well at the moment.

On that note I’ve received a lot of positive feedback about the blog since I’ve started – I’m glad people are enjoying it. It’s been a very cathartic experience trying to get some of my thoughts about my treatment and disease written down, even if it’s a bit more exposure than I’m used to. One of the most helpful things for me when I was first diagnosed was reading blogs from other individuals (sadly most have since succumbed to ALL) who wrote about their day-to-day experiences with the hospital, chemotherapy, etc… Hopefully I’ll have the opportunity to help make someone else’s scary-as-all-hell diagnosis experience more understandable and give a little insight into how I learned to live with the disease. Because that’s exactly what I plan on doing.

– Austin

Dr. B

Because Beth Israel is a Harvard Medical School (HMS) teaching hospital the doctors on the HEMONC unit rotate each week. There are five rotations of different ‘attendings’ (head honchos) and even more fellows (doctors receiving specialized training in Hematology/Oncology), lastly there is an intern who has a 6-week rotation on the unit. The attendings specialize in Hematology/Oncology and most of mine have been here longer than I’ve been around, it’s hard not to feel like they know what they’re doing. The fellows have made a conscious decision to specialize in this field and while they tend to be much younger and earlier along in their careers my experiences have been almost entirely positive. That said, they change every 6 days and on Monday I meet an entirely new team (for the most part) with different styles and levels of involvement – in a lot of ways I think it forces me to be more involved in my treatment which is a good thing, but it does leave one wanting for a little continuity.

So I come to the intern, Dr. B. Now Dr.B is the earliest into his MD out of anyone charged with my care, arguably the least experienced and his time on the HEMONC unit is just a rotation in a schedule, not something he chose but something he had to do. The RNs tell me that of the rotations this can be the hardest on the interns because the medicine is so specialized and patients can turn on a dime making it that much more stressful for someone who may not have had such sick patients before. However, the interns are here for 6 straight weeks providing that continuity which is so lacking when you meet new teams of doctors every week.

Before even reaching the HEMONC unit when I was still in the ER, Dr.B was one of the two doctors who gave me my diagnosis. I found out later that he was less than a few days into his rotation and I was the first intake he was a part of. At the time I was in pretty rough shape and I imagine I was one of those patients that an intern might dread when beginning a blood cancer rotation. Over the last 33 days Dr.B has been in to examine me and answer my questions every single morning and afternoon in addition to the usual rounds he does with the rest of the team. While I may get all of 5 minutes with the team of doctors to get questions answered, when things change during the day or I get results back and need to talk to a doctor it’s been Dr.B who’s been available and frankly very upfront with me about what I need to know. Most refreshing are the times when he honestly admits that he has his opinion but “we’ll bring it up with the team and get they’re view on it.”

It can be frustrating when a doctor who you’ve only had for a few days comes in and asks you “how are the mouth sores feeling today?” When if you’d read through my medical history you’d know that even when I had really nasty mucositis I never had any goddamn mouth sores. Little things I know (and every bit of my care has been spectacular) but Dr. B not only knows I never had any mouth sores, he remembers the day I first developed mucositis and every single day of it’s treatment. I trust him implicitly at this point and have a easier time communicating with him knowing that we share a common understanding of my history and treatment. He may have the least experience in treating other Leukemia patients, but of all my doctors (except my primary who I adore) he has the most experience treating me.

Well, it turns out today is going to be Dr. B’s last day on the ward, off to bigger and better things. I feel far more in control of my own care at this point and I feel I have a better understanding of how the system works in this hospital – when I need to push back for things and when I need to trust the staff. I can’t think of the right way to express my gratitude for everything that he’s been able to do for me and I hope that this experience has as much of an impact for him and his career as it has for my treatment and new life living with cancer. I think his effectiveness as a critical part of my care only speaks to what incredible things HMS and BIDMC are doing to train world class doctors, I’m lucky to benefit from it.

Thanks Dr. B

– Austin

Leukocytes

My usual blood draw at midnight showed my white blood cell count hit exactly 1000 – the last thing I needed to be able to move forward with my tests and treatment. For all the discussion about waiting a few extra days to let my counts recover it turns out all you had to do was threaten my bone marrow and it stepped up. Wonderful news to wake up to this morning – though along with my tests I’m so looking forward to it also means I’m ready for another round of intrathecal Methotrexate (chemo). It’s been a little over a week since my last spinal tap and I may have forgotten just how much I enjoy them…

I also had my first full night sleep in almost a week without any night sweats – another bonus. As far as symptoms go it’s not the worst but getting sleep in this setting is so hard to begin with, anything that screws with your sleep patterns makes the entire rest of the day rough. After waking up every hour, every night for days, I slept almost 7 straight hours through two administrations of IV antibiotics, a blood draw and being disconnected/reconnected to my IV pole for some magnesium. Very satisfying indeed.

Everyone mentioned how god-awful cold it was outside yesterday – looks like it’ll be even colder out there today. Good luck with that!

– Austin

Busy Day

I’ve been waiting on a bone marrow aspirate/biopsy scheduled for day 29 of my treatment (tomorrow) which determines whether or not the chemotherapy has driven my Leukemia into remission. There are a few options for what path my treatment could take depending on this test but the scale and scope of each is determined be the results of this test. One of the most comforting things for me since this all began is being able to know exactly what my treatment was going to be and just trying to understand every single detail of it – I may have had little patience as a human being before being diagnosed but I certainly have none left now.

The hope is that when they take an aspirate and biopsy of my bone marrow it will show a 0-5% concentration of lymphoblasts which would classify me as in full remission and a potential candidate for stem cell transplant – or at least thats what I thought up until now. It turns out there are two other criterion which must be met before i’m classified as in full remission – basically:

  1. Platelet count above 20 Mine: 28
  2. White blood cell count above 1000 Mine: 800

Because I haven’t met the white blood cell count requirement yet there’s no reason to do the aspirate and biopsy tomorrow though the doctors seem optimistic that this will only put the procedure off until Sunday or Monday at the latest. Just more evidence that I’m going to need to find a way to be patient if I expect to survive this with any modicum of my mind intact.

Ideally when they finally do find 0% lymphoblasts present in my bone marrow I’ll be able to begin the next stage of chemotherapy called CSF (Cerebrospinal Fluid) prophylaxis. Because the cancer cells my body is producing are immature lymphoblasts, they’re capable of passing through the blood brain barrier and taking up a presence in your brain and spinal fluid. Any cancer cells that manage to make it that far wouldn’t be effected by all the IV chemotherapy I’ve been receiving -so the induction cycle i’m (hopefully) just completing now includes some chemotherapy injected intrathecally (in the spinal canal). Each time they’ve given me a spinal tap they’ve tested my CSF and found a 0% concentration of lymphoblasts though the science is fairly clear that it simply ups your odds of survival to undergo the CSF prophylaxis chemotherapy anyway.

Because Acute Lymphoblastic Leukemia mostly effects children between 2 – 5 years old with a second peak in the elderly, my case is fairly non-traditional. Because these two groups are so drastically different there are certain parts of a ‘traditional’ chemotherapy regimen that are different between them. The drug trial I’m fortunate to be involved in is designed to test an arguably very aggressive chemotherapy regimen usually given to the pediatric patients.

One part of treatment which can differ between the two peak age groups is CSF prophylaxis – Adult patients typically receive intrathecal chemotherapy along with high doses of targeted radiation directly to the brain. Some pediatric patients in the last few years have instead been opting for higher doses of intrathecal medication along with a rigorous course of IV chemotherapy over a longer period of time – which has been initially shown to be just as effective while avoiding the potential developmental side-effects of freaking brain radiation.

After working myself into almost a complete fit thinking I’d have to argue to opt for what is still considered to be a questionable alternative treatment for and adult with ALL (Because i’m such a non-typical case most of what I’ve had so far has only been done in the last few years, so it’s not a huge leap) it turns out my primary doctor agrees with me. And he’s a lot more convincing than I am.

One other cool thing which he brought up was that because this approach would be a few weeks of chemotherapy instead of just a few days of targeted radiation – I could potentially  do it as an outpatient. I might get some time home before my transplant! I’m not really sure how likely that is but the chance is cool, even just a few nights in my own bed again where I don’t have to give blood at midnight and vitals at 5:00 am. It would be a welcome respite before the (at least) few months I could be residing here on the seventh floor of the Feldberg building. the HEMONC unit is also the Allogeneic Transplant unit so I’m lucky enough to stay with the same doctors, RNs and PCTs while I’m locked up in my bubble post transplant. If I don’t go home in between they’ll just move me across the hall into a transplant room once i’m ready to begin the total body irradiation. That’s going to be an experience.

So, busy day. But things are going well and i’m scheduled to be taken off the high dose corticosteroids (Prednisone) this Sunday which I’ve been on for a month – it accounts for most of the side effects i’m currently experiencing: drug-induced diabetes, fluid retention, moon face (yeah, it’s called moon face), hyperactive appetite, abdominal pain, and mood disorders. Can’t say I’ll miss the constant finger sticks and insulin shots, diabetes was fun but you can have it back now.

– Austin

Chimera

The eventual goal of my treatment to is to beat the Leukemia into remission in order to prepare my body for a hematopoietic stem cell transplant. I’m extremely fortunate to have a full 10-point chromosomal match (~sub 10% chance) in my little brother Dylan (He’s already been born but I still consider him a savior sibling) who is graciously offering up his pluripotent stem cells in order to save my life. After undergoing full body irradiation to eliminate all of the bone marrow in my body, Dylan’s donated stem cells will find their way into my bones and regrow my bone marrow with his un-tainted DNA.

From that point on I will be a chimera which I find impossibly cool – an organism that contains two distinct sets of DNA originated from distinct zygotes. If you took my skin cells and checked the DNA you’d come back with Austin Castaldi – but if you were to take a sample of bone marrow (or I believe certain cells the bone marrow will be producing) and DNA typed those as well, you’d come back with Dylan Castaldi. Dylan will be producing my red blood cells, platelets, plasma, leukocytes, all the goodies my body is unable to produce on it’s own now due to the Leukemia.

Thanks D!

– Austin

Infectious Disease

I’m minding my own business, eating an omelet for dinner, and in walks a doctor I haven’t met before “Hi, Mr. Castaldi? I’m from Infectious Diseases, I’ve read over your history since your admittance on December 30th, do you have a minute to talk?” My gut reaction ever since being diagnosed and meeting the nice new doctors of the HEMONC unit is that meeting any new doctors – especially from new departments – is a bad thing. “Infectious Diseases” isn’t particularly promising either.

It turns out his department is required to do a preliminary interview for all potential Hematopoietic stem cell transplantation (HSCT) patients. The idea is that when you complete full body irradiation in preparation for the transplant you’re  supremely immuno-compromised. They want to get any useful background about where you’ve traveled and what you’ve done on the off chance that you develop complicated and confusing infections after the transplant. Several times before we began he warned me that some of the questions were very odd and “just don’t read into them too much,” of course that’s exactly what I chose to do.

Most of the questions were pretty much what you’d expect:

  • Have you visited the American southwest?
  • Have you been to rural Maine, New Hampshire or Virginia?
  • Have you been to Central America?
  • do you have all your regular vaccinations?
  • IV drug use?
  • Do you see/hear things that aren’t there?
  • blah, blah, blah

Others were a little more out there, and I’m still not sure how I feel about it. All I could think was “this is pertinent to Infectious Diseases?”:

  • When you drink water is it just from the tap?
  • Have you ever been in a jacuzzi or hot tub?
  • Have you ever pooped black tar?
  • Have you ever experienced any discharge from your nipples?
  • Have you ever taken water supplements? (neither one of us knew what a water supplement was)
  • Have you ever had a blood transfusion outside of a medical setting? (cults?)
  • Have you ever had unprotected sex with another species?

They certainly know how to keep it interesting. With any luck I’ll never develop an infection that in anyway presents with me pooping black tar. A man can dream.

– Austin

Teaching Moment

While I don’t have any other significant hospital experiences to compare it to – there are many, many pluses to being in a Harvard Medical School teaching hospital. The doctors (and staff) are numerous, attentive, talented and focused. Almost without exception those providing my care are present and working well past their appointed shifts, most of the time because they’re focused on a symptom or test result of mine. The facilities and technologies are top notch and well maintained – I couldn’t possibly be more pleased with my stay so far at Beth Israel Deaconess Medical Center, aside from the cancer and all.

Though being a teaching hospital – it does provide certain unique experiences. Yesterday I had a few symptoms which could have been cardiac related so as a precaution they decided to give me an EKG. At this point I’ve had maybe ten EKGs in the past thirty days, thankfully all of which have been clear so I was a good patient for one of the PCTs (Patient Care Technicians – essentially assistants to the nurses) to learn how to do her first EKG. Kathy (not her real name) has been one of my PCTs since I was admitted and I adore her, she can’t be more than a year or two older than me though. After about 15 minutes of me half naked with her placing and replacing the leads for the machine it was clear that I’d had more EKG experience at this point than she. We got through it and all the results were normal, It’s a little fun to know that I was involved in progressing her talents as a medical professional which she’ll use to help others after I’m discharged.

I’ve had the opportunity a few other times since my admission to undergo optional procedures and tests to support the drug trial I’m participating in for my treatment and BIDMC. It’s nice to think there’s at least a little I can give back in gratitude for everything I’ve received so far and will in the future. Even if it is just a little bone marrow or blood, hopefully the somewhat experimental chemotherapy regimen I’m on will be proven more effective than conventional treatments and in 2012 everyone in my position will be able to receive a more positive prognosis.

-Austin