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Monday, June 28, 2010

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. 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.

Thursday, June 17, 2010

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.

Monday, June 14, 2010

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.