A Monumental Moment

Tonight, Thursday December 2nd 2010 at 9:38 PM, Lora completed the reception of 9.97 million allogeneic stems cells donated by her brother Scott through a process called Apheresis.  Scott came up to Boston with his and Lora's parents on the previous Saturday.  His process began as an uphill battle, when the screening process revealed nodules on his thyroid and subsequently papillary carcinoma.   The friendly Dana Farber oncology team followed a methodology familiar to me in my olden military days as a combat paramedic.  That methodology is simple, "when in doubt, cut it out", and it works like a charm.  With that sacrifice under belt along with the promise of some future radioactive throat pills, he was able to pump out the 9 million or so T-cells in only a little over 6 hours.  Alot has transpired since my last post, and I will only summarize to bring this up to date.  The last session of chemo really worked well, bringing not only the blast (cancerous) cells to an all new low count of 10%, but also rebounded all of her good cell counts up into the "normal" range.  We were sent home to wait.  Scott needed to get his business taken care of, Lora needed to recover and prepare for the upcoming transplant date which would have been Nov. 5th.  The transplant was then pushed back another several weeks due to misbehviour on the part of some, better left unnamed lady parts.  It rhymes with shusmuterus.  And, once again the DF oncology team employs the age old US army medical handbook standard, "when in doubt, cut it out".  Uh-Oh, no more babies.  Oh well, our boys would probably kill a new baby anyway, trying to put it on a skateboard and pushing it off a vert ramp.  I won't go into detail about my masterful powers of persuation, Dr. Horowitz and the "morcelator".  Lets just say that we leave no stone unturned, and aren't afraid to matter of factly impress our opinions on others to get things done :-).  Lora was happy to hear that at least her ovaries are healthy.  To the point of this post, it's all in all been about 9 months, as Cecil pointed out, not 6 as I'd thought, since this all began.  Now we embark on a new path of what we've been calling the "other side".  The road to recovery.  Even in complete doubt and naivete, having no idea as to what the future holds, we both feel a sense of relief and accomplishment that we've made it to the pinnacle, apex of the slope if you will, point of transition from killing, poisoning, destroying, irradiating, etcetera, etcetera, to the "other side" and on to healing, recovery, growing, living, etcetera, etcetera.  We certainly couldn't have gotten to this point without the help and support of many friends and family members, but indubitably the most critical was Scott.  There really isn't a way to thank a person enough for what he's given his little sister.  That of course doesn't mean one can't try, it just can't be done properly.  Anyway, thanks to Scott and Amber, Lacey, Luke and Lana for giving the time, money, anxiety, stress, organs and blood.  It means the world to us and our boys.

My Darling



I’ve had a rare privilege in my life. I suppose I don’t talk about it much. Or at least as much as a person should, what with all the terrible and difficult things people go through everyday. And why should I? My thing is obviously a result of my own diligence and hard work, yes? An outcome or fruition of planning and execution of meticulously laid foundation and framework? Clearly, avoidance of the all to common pitfalls I’ve watched friend after friend fall into and lose everything they’d worked for and built from nothing, wasn’t it all planned from the start? Well, I can surely say I hadn’t been witness to the perfect examples as a lad. How could I possibly have known what to do, what decisions to make to keep it right and together in all the best possible ways? Can a person learn by negative example, gleaning mainly the right from situations that might leave a scar to the opposite effect? I don’t know. I did know at a relatively young age that I wanted something different. But the idea that I somehow controlled and chose the outcome of the life I live today would be conceited and well, plain ridiculous. As I go further and further along, I realize more and more, that I have less and less to do with any of it. Sure, there are some conscious choices that are made, some dirt lines not to be crossed, but in the grand scheme of things I see now more clearly than ever that I’ve always had the easy part. There’s a 2nd character to the story I tell, a constant presence that is never questioned, never weary, and never leaves my side. Dare I even mutter a cliché as old and tired as this one, but I really can’t come up with any words that would make the point as easily. You all know it, and it doesn’t really even need to be written because it rings true in so many ways. Something about a great man and the woman behind him. I was maybe 23 when I met my wife. This is the stuff of movies, a blind date, a stolen car, and other “interested parties” (I’ll leave that alone with that). Not great movies, I admit, but decent romantic comedies. I wonder who could play me. I’ve always liked Mark Wahlberg. I imagine Lora as, I don’t know maybe, Meg Ryan? Not based on similarities, but I’m thinking “When Harry met Sally”. I swear, I knew the day I met Lora Lee Probus that I would likely marry her. Go ahead and laugh, but if you know her well, you just may know what I know, and saw right from the beginning, in Applebee’s in Louisville KY all those years ago. You see, I’m not at all responsible for the success of my marriage, family, or even career. It amuses me even now to think what I’d be doing or where I’d be left to my own vices. Those of you that know me well would probably agree I’d likely be in prison or dead. There are certain types of people that are just simply, good. In school they were nice, or sweet. Not necessarily cool, or hot and popular because the things you have to do to earn those labels have a nasty way of fathering collateral damage. I do credit myself with recognizing the difference. That much, I suppose, I did do. In adulthood, they become great friends, wonderful loving parents, and in my case especially, lifelong companions and perfect spouses. I can’t really honestly think of anything I don’t like about Lora. No one is perfect, but I didn’t say she was perfect, nor laughingly am I. But maybe we’re perfect for one another. I’m thankful for every moment I’ve had to share with my best, and only real friend. If I were to lose her now, the world would simply stop. Such a beautiful pearl, which has only begun to incandesce in the world. I would take her place without pause. She knows that. I hope she knows that. I’m sure she knows that? Right? She should know. After all the I love yous, anniversaries and special occasions; surely every thing is out on the table, right? I know what you’re thinking. And you’re right. Back to my point, I simply wanted to shed light on a maybe not so often noticed glimmering star, aka soccer mom, den mother, Webster mom, ManchVegas knitter, superstar kickboxer, mega crafter, and unwavering love of my life and that of my two super boys, Lora Lee. You bring a smile across my lips at the very utterance of your name. I will be with you in all things till the end of the universe. What cosmic coincidence brought us together needs no explanation for me. I just want to live in its consequence as long as possible. I couldn’t be happier in life than I am with you and our family. Get some rest, you deserve it. I Love you.

BK

Don't Wait Too Long

Madeleine Peyroux – Don’t Wait Too Long


I was just awakened from a midnight stupor by an interesting melody streaming into the Droid from Pandora. This woman’s voice is haunting and reminisces of an older time, but the melody of the song was spot on, and caught my attention. For those curious, this was the Norah Jones channel. It relaxes me, I can be intense. I paid heed to the lyrical content and her words found a place in my head. “Don’t wait too long”. This is a powerful concept, and so, so true. Here is the text in full:

You can cry a million tears
You can wait a million years
If you think that time will change your ways
Don't wait too long

When your morning turns to night
Who'll be loving you by candlelight
If you think that time will change your ways
Don't wait too long

Maybe I got a lot to learn
Time can slip away
Sometimes you got to lose it all
Before you find your way

Take a chance, play your part
Make romance, it might break your heart.
But if you think that time will change your ways
Don't wait too long

It may rain, it may shine
Love will age like fine red wine
But if you think that time will change your ways
Don't wait too long

Maybe you and I got a lot to learn
Don't waste another day
Maybe you got to lose it all
Before you find your way

Take a chance, play your part
Make romance, it might break your heart
But if you think that time will change your ways
Don't wait too long

Don't wait
Hmm... Don't wait

Maybe I’m reading more into the lyrics than is there.  Madeleine was quoted once as saying her “whole life is in this song”, which leads me to believe there’s some insight. Amazing that we can only see the truest principles in life after experiencing a loss, missed opportunity or tragedy. I suppose we all try to instill these types of values in our children, but do we really provide such an example? I heard an author on NPR once mention an exercise he did with his kids every year during some religious holiday. They used no electricity for 2 weeks in the home. Using a fireplace for heat, by candlelight they sat and read, talked, played games and connected as people did in a time when there was no choice but to live this way. I loved the idea, and contemplated doing the same (maybe only a week) with my family. We have a Wii, PS3, PSP, Nintendo DS, PC, Wi-Fi, laptop, HDTV, MP3 players, DVD-RW, CDRW, Digital Cams, Cell phones and Droid with unlimited text and data packages, and who knows what else is buried in the piles of electronics and cords all around the place. If only the white glow of an LCD monitor could tan my face, I’d be like a Ken doll. Thinking about all of this, now, maybe I get it. Lesson learned. Unlikely. Sometimes I think I’d like to just live in the woods with a guitar. Since I suck at playing it, likely the guitar becomes firewood. Then what? Without all the things we “need” to get through the day, what kind of person would we be? I think this may be the reason for such a high divorce rate. People don’t really ever spend time together, with all the gadgetry and digitizing we do constantly. Lora and I have literally texted each other from the next room. Sometimes from the same room if making rude comments behind the back of an unruly guest. Once they’ve been around one another long enough for some real personality to seep through the proverbial media shield, one can’t stand the person they’ve found on the other end and blamo, divorce. I say, you want to marry someone, spend a month with no TV, internet or phones. If you still want to marry, then you’ll likely succeed. Marriages of old lasted longer because they passed this test unbeknownst. Lora and I did this experiment by default because we were broke and couldn’t afford any technology. 15 years, theory proven. Don’t marry someone you can’t sit and stare at for 30 days. Don’t get me wrong, this revelation isn’t going to have me dumping my droid in the Merrimack, but I think we should all take some time more often than not and enjoy the people and things that make our lives worth something, whatever that is. And if there is something in life that may make you happy, don’t wait too long.

-BK

Where does this lead?

Do you ever wonder what you'll be doing in 5 years from the present?  It's a common career exercise, but can our relatively simple minds really even begin to grasp the vast variability in what occurs from day to day in even one person's life?  Not likely, but I try.  More and more so lately.  And I wonder how many people could look back 5 or 10 years and honestly say that where they are and what they're doing is close to what they had imagined for themselves.  I find that I've constantly surprised / appalled myself.  I never thought I'd join the military, and although that decision was made in haste and not well thought through, it turned out to be a great experience (except for the whole "getting shot at" part).  Never would I return to Louisville having departed the military.  Wrong again.  No way would I be married at 20 and change, but when you know something, you know it and after 15 years I've proven myself right.  I did always expect I'd have children, if only as a longing to be a good father.  Of course the definition of a "good father" certainly has many variables in itself.  I like my definition best.  Working mostly in the medical field, I never thought I'd go to school and end up working in a technology field.  Never in a million years could I have guessed I'd move to NH and work for a quirky genius inventor, getting to touch so many amazing projects.  In the end, everything seems to fit in place and tie together nicely, but how much of that can be attributed only to "dumb luck".  It fits almost as though it were all part of an orchestrated plan.  Even now, in a way, as our proximity to Dana Farber (Arguably one of, if not the, top ranking cancer research institute world-wide) gives us the best chance for success with the least disruption and travel.  If you're going to let researchers and interns treat you, it may as well be Harvard, Right?  For now, I suppose we need simply to focus on now, and not concern ourselves with where we'll be in 5 or 10 years.  The concept is proving difficult.  Try as I might, I'm having a difficult time speculating about what the future has in store.  Next month is as unclear as next year and this new experience has broken me into a new person with different perspectives and ideals about everything, including what I might expect or hope for in the coming months and years.  My standards are lower, or higher depending on how you look at it.  You just never know what is going to happen.  The truth is, in most cases, you probably don't want to know. 

Well, well. Here we are again.

Here we go again.  This is what I've caught myself thinking as I sit here at the B&W Hospital in Boston once again.  It's a hair before midnight on a Tuesday night, when the wireless network for guests here is the fastest.  Although much more prepared for this trip than last time, it still seems a little surreal that this could possibly be "actually" happening.  Long story short (I know I always say that, may be my fav phrase, although usually couldn't be further from the truth) everything we've done for the last 3 months was a completely useless waste of time (Yes, there are many great examples of a useful waste of time like blogging while your spouse gets chemo).  Decitabine couldn't handle the medical anomaly that is Lora Lee.  She walked through chemo as if it were simply a much needed nap time in the middle of the day for a week a month.  I knew it.  She knew it.  The crap wasn't doing anything but costing Aetna $2,666 per day.  Lora's blast count didn't budge.  It didn't increase, which is a good thing, but it sure as hell didn't go down.  Of course not, especially considering that they only did 2 cycles.  Even the genius that is the FDA recommends a minimum of 3 cycles for effectivity.  Dr. Alyea said "getting remission prior to transplant provides better outcome".  He then said later, "you want to have as little chemo as possible, and a little MDS is OK for transplant", subsequently terminating chemo cycles and begins to schedule a transplant.  So the pre-transplant BMB shows no change in the blast count, and what, do you ask is the solution?  More chemo to reduce the blast count.  I know, really??  Now, as anyone (if there is anyone) reading this knows, I don't have a PhD, but there seem to be some contradictions in logic occurring.  I'm sure if I were to find out this guy is rushing our transplant schedule so that he'll be free to make an appearance at his Georgetown High School reunion in the fall, I'll likely go on a shooting rampage.  Oh yes, I have guns, as I too, dear sir am from Kentucky.  Enough about me and my over-use of commas.  This is day one.  We're already a little bored.  Lora has a much greater ability to sleep in strange places than I, and I have a feeling I'll be a zombie in a few days.  I recently pulled an all-nighter in Atlanta, GA on a business trip and learned that I do not still have the ability to function on little to no sleep.  Lora is sleeping now with one clear and one blue tube pumping some pretty nasty poison (Cytarabine) into her hickman line.  A E-friend of hers recently informed her that she is now at (roughly) 99 days post BM transplant and doing well.  I think it was somewhat comforting for Lora to know someone else came out the back end only slightly worse for the wear.  What's comforting for me is to know the boys are safe and sound in their beds with Cecil and Loretta acting as surrogate parents while we take care of business.  I know the boys will stretch the bounds of their reality a bit in our absence and require some "retraining" upon our return, but it's a small (miniscule actually) price to pay for the advantage of having ppl who love them caring for them on our stead.  Anyway, our time here will truly test the mind occupying capability of an iPOD touch, Nook, Samsung Rogue, a Droid and a couple of laptops.  I've finished 3 soduku puzzles (medium) and lost about 10 chess games to the Droid 2 and typed one blog post.  Also, the Droid's lie detector app clearly proved Lora regrets the day she got involved with the likes of yours truly.
 -BK

The Nature of People

When something terrible happens to you, it is generally expected and understood that family and close friends will step in and offer support and/or assistance. It's often a sad tale read in a news article or blog when some poor soul is in a bind and has no one to help in their time of need. I can remember personally being shocked and disgusted in hearing about a loved one or child left abandoned and alone to deal with overwhelming or horrible circumstances. Not everyone has someone, but everyone with someone hopes and expects that that someone will be with them through thick and thin. But, I ask, what about those not-so-close friends, distant relatives, or acquaintances? To what expectation should these, more casual relationships, be held in a time of need? I think it's fair to assume that in most cases, casual, less intimate notes of support and well wishes perhaps via a card or short letter are more than adequate and surmount to a great level of appreciation. In cases of the more casual acquaintance, many are not aware of personal situations that arise unexpectedly and only in hearing through the proverbial grapevine or chance meeting, can they express condolences or support. At this point, although, Lora and I are only in the very beginning of what will undoubtedly be a long process, I’ve already witnessed this human phenomenon at all of these levels. Close family, distant family, close friends, distant friends, old friends, casual acquaintances, business acquaintances, neighbors. All behaving as one would expect given bad news about yours truly (or ours truly). But the one common thread amongst all of these relationships is the fact that they all know us. The topic of this post is really outside the scope of these predictable relationships. My question is of the person or persons who don’t really know you at all. I’ve spoken of the subject once before in Lora’s caring bridge blog (Well, sort of) discussing the idea of blood donation. In that case, I think people can put a more personal spin on the “random act of kindness” knowing that it is an everyday need, and not all that much of an inconvenience. Bone marrow donation is significantly more demanding of time and money, as it costs a bit to register and you’ll likely make multiple visits and spend a day in outpatient surgery. You’ll also leave with a painful reminder of where that stuff came from. A literal pain in the ass. But this is still not my point, as it is a known statistic that most people join the bone marrow donor registry because someone they’ve known or love needed or had a BM transplant. This places them into the first category I mentioned, as it is at least motivated by someone they know well. There are special people out “there” whom do not need motivation or recognition to do something out of the ordinary for someone they do not really even know. Prior to now, my only exposure to people like this was the families featured on extreme home makeover every Sunday. I can’t honestly say that I fit into this category either, as I’m generally too skeptical to risk falling for some scam or rip off. I don’t give money to charity (I don’t have any), and I’ve never followed through with ponderence of volunteering as a big brother or some other sort of surrogate dad type of charitable role. I’m not a bad person, but neither am I one of the special types of people that give, even when they don’t have. I would like to be. I’ll say this right now, consider this intermission, that Microsoft grammar checker can kiss my rear end. If it doesn’t like my sentences, it apparently didn’t go to public school. Never mind that, and to my original point, I’m not going to go into details about what inspired this post, but I did find, rather they found me, some of the special people we’re talking about. With nothing to gain, and no personal ties to Lora and me, some very special people invested time, money, energy, and resources to support a cause that is not in the public eye and will likely never offer a return. So with great humility and a new (or renewed) confidence in the nature of people, I want to thank everyone at Team Link in Mass, as well as all of the friends and family that have shown us so much support in the past few months. For those of you closest to us, prepare to dig in, because the going, is going to get a lot tougher in the months to come. For those of you whom are not close, take cue from my Brazilian friends and go out and do something for someone. It’ll make the place better for us all.

Viva o Brasil

Decitabine

This post represented a significant, to me at least, milestone in that my journal writing briefly caught up to real time, and I was no longer using my severely underpowered means of recollection as source material. In writing this I'm sitting chair-side watching Lora take the 3rd dose (1st cycle) of Dacogen brand decitabine. The first two days went smoothly, with no noticeable effects. Following the first dose, we both actually slept better than most recent nights. Parially from the exhaustion from hellday, I imagine, and partially from the relief of finally beginning treatment. Previously, Dr. Steensma had eloquently described chemo as generally "anti-climactic". During a therapy this week we had the pleasure of meeting "Dottie", a 92 year old bird with a charm that would smash the golden girls on their best day. She repeatedly asks why she's here, eliciting the same responses from every staff member in the building. I watched her full-on grope herself, both breasts and exclaim "I think one is bigger than the other, is that why I'm here!?!" She's a delight to have around, as the entire normally docile crowd bursts into laughter with each quip. It's nice to have a break from serious thought, although, I am beginning to realize changes in the way I look at things in my life and day to day. Looking at these bags of chemicals, my mind given time to wander, I think about the hours and days of the ppl who mixed it, and put it in the bag, and prior to that chemical engineers and scientists who identified, tested and developed it into the FDA approved product that it is today. I also wonder what it's doing to Lora, and is it working?

Ouch!

Crack of dawn trip to Boston during am rush hour traffic wasn't too bad, we were sitting still on the freeway before we left NH. My most notable memory of the morning was the extreme depth of our parking spot 5 levels below the earth's surface in a garage that just didn't seem to be 100% structurally sound. Lab work & exam room waiting was relatively quick compared to previous experience, then we met the P.A. who would be doing the stem cell harvest for the G-Vax trial, Melissa Cochrane. This would become the (so far) most excruciating and horrible procedure Lora had yet to experience. It seemed that Melissa couldn't quite achieve the same needle path with the biopsy tool (which is a large T-handle screwdriver with a point) as she had established with the lidocaine needle (local anesthetic). The result of this ineptitude was her running the biopsy tool in and out of Lora's back, probing through muscle & nerve tissue for about 45 minutes. On multiple occasions, she removed the large needle & reinserted the smaller lido needle to the bone as a feeble attempt to train her muscle memory in locating the same spot with the screwdriver. As she hit nerve bundles, Lora's body would involuntarily flop upward from the table & she'd let out a painful shriek. It sounds horrible, but the visual imagery actually nearly made me burst into laughter. Lying flattened, face down, her feet and head would pop upward in a backwards arch like a fish out of water. I had to bury my face in Lora's purse and my laptop bag to maintain my composure. Poor Lora would have smacked my head off my shoulders had I burst into "the laughness" during the most painful experience of her life. (Be advised that both of our children were scheduled C-sections with no labor). Like magic, something clicked and it was over. Lora was a wreck & now we had to drive 2 hours back o NHOH and take her first ever dose of chemo. Lora still swears to this day that she won't have Mrs. Cochrane back for another try. I say we'll see, because it's likely we'll have many of these in the years to come. I don't personally have enough experience with BM aspirations to comment on whether this was something normal, or if Cochrane had a bad day. I do know two others Jaime and Dr. B, had a much easier time of it. Maybe the issue was anatomically induced, as both previous attempts were on the right hip bone, this one was on the left.

Dr. Alyea and the day from Hell

For most of us, life at home returned to normalcy. Cecil and Loretta stayed in the boys' room, the boys joined Lora and I in our room, one on the extra sofa we put in last summer after buying new livingroom furniture from Tom D at work, and the other on a camping cot I found at walmart. Sounds uncomfortable, yet they actually fight over who gets to sleep on the cot. Work, school, karate practice, play-dates, all normal. This went on for a week or two while waiting for the final pathology reports to come back, chemo arrangements to be made & scheduled back at NHOH in Hooksett, and a visit to to DF in Boston to meet with a bone marrow transplant specialist, Dr. Edwin Pascall Alyea III. Ironically, he's from KY as well. Is this a good omen or bad? You tell me. He very frankly discussed with us the risks and benefits of a bone marrow transplant as well as the fact that it poses the somewhat slight and only chance of reaching a curative outcome in Lora's disease. He said 10-15% of BM recipients experience fatal side effects from the treatment itself. (Internet says 20%). We also discussed (and approved) participation in a clinical study called G-Vax which is comprised of an aspiration of Lora's cancerous stem cells which will then be treated and irradiated for use in creating a "vaccine" to re-introduced to Lora's system after the "donor" stem cells have been transplanted and engraftment takes place. The idea is that the donor immune system (now in Lora) will identify Lora's original displastic cells as foreign and attack them. Animal trials showed promising results and previous human trials suggested that this could reduce or eliminate relapses. Dr. Alyea's main point about G-Vax was that is was very little risk / high potential reward. The concept was developed by a scientist at DF and had been subsequently bought and taken on by two different development companies. The first of which ran out of money. Needless to say, this undoubtedly further postpone the start of chemo, as the necessary biopsy/aspiration would be scheduled for the following Monday. NHOH only runs chemo on a Mon - Fri basis. Well, like a pair of genius', Lora and I decided to schedule the biopsy Monday at 8am in Boston, & first chemo that afternoon at NHOH. That turned out to be a regrettable decision, as it was the day from hell.

Sent Home Early

I can't really tell you in words how it felt to walk into the room with the entire medical team (Dr's, Nurses, Fellows & interns) all sitting around our (Lora's) bedside with what I recall as being a very serious attitude and concerned body language. Well another long story shortened, we were told that the 2nd (3rd) biopsy revealed that in fact Lora's condition was indeed likened to MDS and "technically" not Acute Leukemia. "Well, that's better right?" is what I recall saying aloud. In fact, there is an imaginary border line used in oncology practice which delineates the precursory MDS condition from that of AML. This delineation is comprised of the ratio of blast (cancerous or displastic) cells to healthy stem cells in the bone marrow. Below 20% equals MDS, while above 20% equates to AML. Lora hit the 16-18% range, where based on the first biopsy, she was thought to be in the 20-22% range. Now we were sent home to do chemo-therapy in an out-patient setting. The drug of choice would also differ, using a milder, less toxic type of drug known as decitabine (Dacogen brand). The regiment would be 5 days on with 4 weeks rest between. (We later found that it's really 3 weeks rest between, because the 4 weeks starts on day one of chemo) This would be repeated for likely 4 cycles. Lora was given a unit of platelets prior to the C-line going in, and later 2 units of red cells (Apos) before going home. We were in the hospital only 3 days. With this fresh veno, Lora was basically symptom-free with the exception of a giant double lumen Hickman Catheter dangling out of her chest. Jacob's first and only comment was something along the lines of hooking mommy up to the Wii (yes, the tubes are white).

Brigham & Womens Hospital

And so it began. Minimal discussions with the boys, who at this time are 6 and 9, invoked little response. They were more excited by the news that "mom-mom" and "pop-pop" may be coming to visit. Lora's parents, upon hearing the news, immediately dropped everything and packed their van. They arrived from KY in just under two days with a commitment to stay as long as they were needed. I'll just take a moment now to note how extremely appreciated and valuable Cecil & Loretta are, not only in this situation, but throughout my relationship with Lora which, by the way, now spans roughly 17 years (give or take). You just can't put words on what it means to have people like them around you, even if you live far away. Them having arrived so quickly, allowed Lora and I to go to Boston alone and the boys missed nothing from their routines, which I felt was quite important in how they handle stressful news about their mom. Day 1 of the hospital stay was 90% of the work. Everything was done, except the C-line, and we simply needed to lay in wait for the final pathology report on the "new" bone marrow (Dr. Brastianos did this one and it went OK) confirming the diagnosis which would allow us to proceed. We basically did nothing for a full day, myself working across VPN, and Lora slept, drugged after having the C-line placed in her chest. I was later roaming around the hospital, checking out all the various waiting room layouts and looking for babies, when my cell phone rang. (remembering now that I actually called & spoke to my mother, Carol, for the first time since this started as well) It was Dr. Brastianos, & she said her and the med team were in Lora's room waiting for me to return.

Dr. David Steensma

Long story short, our new oncologist, Dr. David Steensma (recently migrated from Mayo clinic) came in the room and told us that Lora had Acute Myeloid Leukemia, the most common form of adult Leukemia. He sent us home for 3 days or so to settle up business and report to the Brigham and Women's Hospital, which is across the street for the DF, for a 21-28 day inpatient hospital stay. I admit that now writing this retrospectively some minor details are lost as we are currently fully engaged in treatment. Anyway, following this meeting with Dr. Steensma and his fellow (student) Dr. Priscilla Brastianos, came the first time (at least to my recollection) Lora and I sat together and cried. The hospital stay would include and echo cardiogram, EKG, chest X-rays, blood work, a 2nd (3rd) bone marrow biopsy, implantation of a Hickman catheter (central line), 10 days of chemo-therapy and recovery period. This is called induction chemo, and would be followed up with several "consolidation" therapies in the months to come.

Dana Farber

We made our way down to Boston early Monday morning and found the Dana Farber Cancer Institute in about 1hr 20min, and valet parked the car. Actually no, we parked in the nearby galleria parking garage and walked around for 20 minutes until someone recognized our "we're lost" facial expressions and offered to help. She looked like a nurse. The moment we walked into this place we both became acutely aware of our now eminent submersion into the world of cancer. Bald or balding people of all ages and walks of life with face masks and vinyl gloves donned everywhere we turned. I think we both put our heads down and walked to reception staring mainly at the floor. I do remember noticing a few compassionate eyes glancing our way, following Lora across the room as if to say "oh how sad, she's so young". These are the same looks I noticed from the nurses desk the first time we walked through NHOH with the boys in tow. It's almost as if they knew, because everyone who walks through here ends up with the big C. After checking in, they drew 10 or so tubes of blood and walked us to a tiny exam room for what ended up being close to 3 hours of waiting. We had no idea what awaited us.

First Bad News

We didn't make it 2 weeks when NHOH (Dr. DiVenuti) called Lora on her cell around mid-day on Friday and stated, paraphrasing of course, "the preliminary results are back, and it doesn't look like Leukemia, it looks more like it could be Myelo-Displasia". And yes, this was the first time any of the medical staff had uttered the word "Leukemia". Of course I immediately began a whirlwind self education of MDS, it's causes, treatments, symptoms, mortality and remission rates, etc. By the end of the day, I was a self proclaimed expert, thanks to wikipedia and google. LLS.org is a great site as well. The problem apparent with MDS is that not only does it seem to look and act just like Leukemia, most ppl with it end up having leukemia anyway. This is the first time I felt I really knew Lora was going to have to endure chemo-therapy, as it's the primary first course of treatment for either MDS or Leukemia. Dr. Divenuti said she'd like us to go for a consultation (2nd opinion) with their parent facility in Boston, the Dana Farber Cancer institute. An appointment would be made for us and it would be on the following Monday.

Bone Marrow

Friday came, and a very nervous Lora was asked to disrobe down to underwear, and put on a standard open back hospital gown (a Johnny). As of now, I can’t seem to recall the PA who did the biopsy (I’ve since learned this was Jaime at NHOH), but I can picture her face. She had a pleasant demeanor, but packed a wicked punch in the form of two big needles to first numb the superficial tissue over the upper portion of the rear hip bone (imagine your lower back above one butt cheek), and the second a pencil sized device to jam into the bone to aspirate red (superficial) and yellow (deep) bone marrow. The first attempt returned little to no cells, and a 2nd go had to happen. Lucky Lora got to have her first and second BM biopsy at the same sitting. She took it like a trooper and June 2nd, two weeks later, would be our appointment to review the results with Dr. DiVenuti. Yes, 2 weeks. It’s amazing how much Wiki research and speculation one can do in 2 weeks. At least I had a moderate distraction, in the form of a business trip to the thriving business Mecca that is Detroit, MI. It was only four days, but WTH, it was most of the first week.

Dr. DiVenuti

Dr. DiVenuti is a spunky little hematologist at NHOH in Hooksett, whom was also chosen based on Aetna plan participation and location (As well as Dr. Dan’s referral). Having learned of the ultrasound done and not seen a result, Dr. DiVenuti marched out of her office, made a phone call (I assume), and confirmed both were normal within 3-4 minutes. Another blood count was performed here, confirming not only were all three counts low, but also had declined further since Dr. Dan’s CBC. A few other blood tests were set to be run on this blood, possibly indicating a root cause and steering us away from our next appointment which was for the upcoming Friday when Lora would under go her first ever bone marrow biopsy. Needless to say, all other blood chemistry tests came back within normal range, and Friday’s biopsy was to be as scheduled.

Dr. Dan

Dr. Dan became our family Dr. a year or two prior to this. I needed a physical for an upcoming fight (long story) and while visiting a random ophthalmology office chosen from a list of participating providers on Aetna’s website, and based solely on proximity to my location and appointment availability, I noticed a family practice located in the same building had nearly no one in the waiting area. So, half blind from pupil dilation, I wandered in and asked if I could get a sports physical on the spot. Please note how laughable that thought is and that every office I had called so far was scheduling physicals for 3-4 months in the future. Being the procrastinator that I am, I needed a physical for a fight that weekend. Anyway, the (very nice) young ladies at the desk said “sure, Dr. Dan will do it”. Dr. Dan, you say? Yes, Dr. Dan Waszerskowski, fondly known as simply, Dr. Dan. Well, Dr. Dan was a good guy, thought it was cool that I was a pro fighter, had kids at the same schools as mine, and cleared me to fight that weekend. Long story still long, I transferred our family medical needs to Dr. Dan. Lora’s encounter with Dr. Dan was quite short and uninteresting. He confirmed the low white count, and added platelet and red counts to the short list as well. He referred us to a hematologist. Just to add, he did send Lora to a lab (Elliott) to have an ultrasound performed on her liver and spleen. We heard nothing of these results until we were sitting in front of Dr. Gina DiVenuti.

The Beginning

In March 2010, my wife Lora went for a routine OB exam, for the first time in several years. We had moved north to New Hampshire from Kentucky, chasing a career opportunity working for Dean Kamen, a well known inventor. She simply hadn’t made the time to seek out a new local Dr. and while not having any health issues, put it off. A good friend recommended a mid-wife with whom she was comfortable. Lora was pleased with the visit and everything came back well, or so it seemed. She (Lora) had mentioned in passing to the mid-wife that it had been nearly four years since last she had a checkup. The mid-wife aptly recommended a few routine tests including a blood cell count. Having been home several days and fully enveloped in our families’ daily routine, Lora received a call from this mid-wife on her cell phone. It was stated that everything was normal, with the exception of her white count being a bit low. She recommended Lora see a family Dr. to follow up, as this wasn’t her specialty. This brings us to Dr. Dan.

Were not in KY anymore......

Well, well, well. How did we end up here? Honestly, I can't say completely, and it will take quite a few posts to try and explain what has led me to A: move to New Hampshire, B: write this blog, and C: sit and watch my wife take her very first dose of chemo-therapy. I am going to use this blog for a few purposes. One is to obviously communicate details out to friends and family about our experiences and hurdles encountered and overcome during what will undoubtedly be the longest and most difficult period our lives together. Secondly, this may help ease the grimey inner demons I deal with as a primary care-giver of a "Cancer patient". I picked up a knack (or lack thereof) for writing a journal when I was in the military years ago. I found it helped take the edge off of what I found to be highly stressful situations. I haven't written in a journal or blogged (which didn't exist back then) since, and began again when this all started. Typing may not be as appeasing as writing, but we shall see if it is therapeutic enough to maintain. If not, I'll transcribe my mostly illegible notes to the blog after-the-fact. I welcome any comment and/or critisism about either content or penmanship.