Mea Culpa from Big Bird

Brothers:
Here is an extremely heart-wrenching and yet uplifting update from Bird. It is a (significant) excerpt of a letter written to his Uncle that reviews the last months and his current situation. It is a MUST read:
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My fraternity bothers have kept me busy for the last few weeks with phone calls, visits, and last Saturday night, with a sizable gathering in Maple City. The numbers have not come in yet, but I would say a crowd exceeding 50 brothers converged via planes and automobiles. One brother shortened his business trip in the far-east and flew into Traverse City. Two others purchased last minute tickets, flew into Chicago from Los Angeles and drove up for the gathering. Another Brother recently purchased a 6-seater Cessna and flew him and five others into Traverse City, then turned around and flew back to the Detroit area to pick up a few more who were going to run late and arrived in the evening for all of the festivities. Needless to say, among all of the other friends and family, the Brothers made there presence known. The evening was priceless and of course, was over too soon. The memories and my appreciation for their concern and effort extend beyond description.

And speaking of appreciation and the goodness of friends and strangers, there have been many folks who we have met through the kid social functions during the past couple of years. When word of my health problems began circulating, phone calls, food, and offers for help of any kind at any time began (and continue) to roll in. The sense of community I had not recognize before has become as apparent as the clear blue sky I am enjoying as I sit here receiving a transfusion today.

Family support has been nothing but exceptional. Barb, although somewhat rattled, has been remarkably strong, maintaining as normal a household as possible while spending a lot of time researching every possible avenue of my illness as clues have arisen. Dad once again, has stepped up to the plate to act as patient advocate. I told him I simply do not have the capacity to start a new last minute career in medicine nor become proficient in the medical lingo necessary to make sound decisions by myself. Although distracted by her own ailments, Mom has been nothing but supportive and, of course, continually points to her own history. She was going to start attending each of my medical appointments along with Dad, some unscheduled medical concerns have interjected themselves as of yesterday. Aunty Anne and Uncle Phil, well where do I start? They have pulled up stakes and visited for a couple of weekends, forgoing any of the usual “up north” fun stuff for a regiment of house cleaning, cooking, and fire wood splitting and stacking at our house. And let us not forget all of the phone calls and emails from all of the family. I apologize for my lengthy turn-arounds but there are only so many hours in the day.

So what happened you ask? I had been noticing an ongoing reduction in my strength and energy level for the last number of years. I wrote it off base on the comments of doctors at each of my annual check-ups as aging. In recent times, say the last year or so, my days working on weekend home projects reduced in hours from 8 or so to 4 or 5. When doing extremely labor intensive chores, I began losing my breath and if for say an hour or so, I would sweat through my shirt and pants. At the beginning of the year I decided I had been a bit lax in addressing my winter project, finishing the basement, and made a change in routine. First to go was the whiskey and sitting in my chair watching TV each evening after work. Second was staying up late and sleeping in until mid morning. It worked to some degree for the first few weeks, I installed sub-flooring, water and gas lines, electrical outlets, ect, however, it seemed I was spending too much time in the basement when the kids were home. By this time, I had started going to bed by 9 to 10 pm but was still rolling out mid-morning. In order to maximize family time, my next plan was to wake up with the rest of the family, so in February, I started bedtime around 8 pm, however, I seemed to have little energy to go downstairs and work on the basement and still could not arise before mid-morning. At some point I realized pulling the garbage can to and from the end of our 1,100-foot long driveway was extremely strenuous and nearly impossible for the last 100 feet where the slope is somewhat excessive.

On Sunday, February 22, I visited my folks and approached my dad for some advice. He listened to my heart which sounded fine with the exception of my 115 bpm sitting rate. Later that evening, I told Barb that I was in trouble and that Dad had told me to get to the doctor. An initial visit to the walk-in clinic revealed a mass on my right lung. My hemoglobin level was determined to be well below the normal range of 13 to 15 or about 6.5. Later in the day, the call came in from the walk-in doctor to get to the emergency room immediately, where, after procrastinating for 5 hours, my level had dropped to 5.4. I was told that certain people would be in a coma at this level, even though we walked in from the far reaches of the parking lot with arm loads of stuff. I attributed it to my vast experience with consuming large quantities of adult beverages over the years, which received a few laughs. Anyway, the first part of the week (starting Monday, February 23rd) brought a wonderful array of medical related activities including, but not limited to, scoping from the top side, scoping from the bottom side, biopsy of the lung through my back, X-rays, CAT scans, blood IVs, iron IVs (ouch) and, of course, the related fasting and laxative consumption. Now remember, I saw the initial X-ray of the mass on my lung, and I knew I was in deep trouble, but on Friday of this fun filled week, two of the doctors “in charge” of this case paid me a visit during which they held my hand and shoulders and pronounced the preliminary findings of the biopsy, a carry-over of melanoma from one of the two sites treated in 2000 and 2006. Now for those of you who do not remember my earlier health issues, I found each of these and when they were removed, they were determined insitu or localized and contained within upper skin layer where they would not be able to get into the blood stream and plant themselves elsewhere. You can only imagine receiving what statistically and historically has been considered a death sentence was like. I left the hospital that day and went home to wait for confirmation of this diagnosis and to start writing lists of things that needed to be completed before things got real bad. The following Monday, however, brought an interesting twist…during a visit to address an infection of a former IV site, one of the doctors noted casually that there was some confusion with the preliminary diagnosis since the melanomas were insitu. Then Wednesday, another “team” doctor called and said the three-stain test did not stain positive for melanoma. Of course, as if this ride were not bouncy enough, the following Wednesday the gastro-intestinal doctor called with the results of a camera pill safari through my small intestines (which was necessary since neither the upper or lower scopes revealed anything out of the ordinary) and noted there were nodules consistent with melanoma. That was a real kick in the head, which carried me through to my first meeting yesterday with the oncologist.

After one month since checking into the hospital and two weeks since the local pathologist gave up and sent my lung biopsy to the Mayo clinic, I am still waiting for a diagnosis. However, as of yesterday the doctor is fairly confident that the lung mass nor the bleeding mess in my small intestines are not melanoma. So it seemed like every step of the process to date had provided me with the worst possible outcome, but excluding melanoma from the menu was a great and welcomed turn of events. Unfortunately, as the oncologist noted yesterday, I am in serious trouble.

I have malignant sarcomas in my lung and small intestines, which means it started in one location and has spread to another, leading to the logical conclusion that it is present throughout my body, but only has set up shop on a detectable basis in one location. Sarcomas come in tens of varieties with a plethora of treatments and possible outcomes. Unfortunately for me, since it has moved to a second location, this doctor says surgery will not help, which leads to the logical projection that they will have to poison this mess using chemotherapy. The oncologist has recommended I move operations to the University of Michigan as they have an exceptional reputation for this type of cancer, however I am stuck sitting and waiting until the actual type of sarcoma is identified. I hope it is the one that is easier to treat.

The oncologist requested a check on my blood yesterday, which on a side note it is surprising that none of my “team” doctors has made that suggestion since my February 27th release from the hospital even though all knew I was still bleeding inside, and the results indicated my hemoglobin levels were back down to 6.7…and that is why I am sitting here with the time to bring you and the rest of the family up to speed in such vivid and dare I say extreme detail. First guess is I need three units of blood, which puts me here from 8 am this morning to mid-afternoon. We will see how this plays out a little while later.

So on that note, I would like to thank all of you for your prayers and wonderful support for not only myself, but my family. And to those of you who are in the battle, let us continue our personal battles with this monster that is trying to take us, and be victorious. Although I speak from a vantage point from which I have not experienced the emotional ups and downs nor the pain and anxiety that comes with each step of the treatment and hopefully healing process, I can only say I have every intention of coming through on the others side in one piece and with a renewed appreciation for friends, family, and life in general. As far as I know, we only get one shot at our present lives here on earth, and I have every intention of extending my stay here on earth as long as possible. I will try and post my daily adventures on Facebook for those of you who have time to surf your computers.

So who is in charge of the family get-together this year?
Thanks again everybody and let us all hang in there.

Love,
Mark