Visit the MDS Foundation to support research or learn about Myelo-Displatic Syndromes

Thursday, July 15, 2010

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

Tuesday, July 13, 2010


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?

Wednesday, July 7, 2010


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.