apparently depending on Facebook settings, some are not able to get to jeff's blog.. It is long & I think I will post just the first two parts here for those interested & unable to go to the source. the following will be from Jeff's journal, dolly -
1st entry - December 21, 2009 9:00 AM
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In an effort to make everyone aware of my condition, I thought I would write down a brief summary of what is going on for family and friends. I will use this as a blog and update this note with new entries at the bottom as I know more.
It is indeed a pivotal time in life.
As many of you may be aware, I have been battling some back pain for the last couple of years.
To begin with, it seemed like the pain in my lower back and abdomen was associated with my colon or lower digestive track. I had rather severe pain, including pressure around my rectum. As a result I went to see a Gastroenterologist here in the Boise area. At my age (well past 50) the Dr. immediately suggested a colonoscopy. We did that and the Dr. indicated that there was a mild case of Diverticulitis, which is a fold in the colon wall where material collects and becomes irritated or infected. I was put on some special antibiotics and treated for this for 4-6 weeks. At the end of that time, the Dr. was convinced that my Diverticulitis had been successfully treated and my sypmtoms seemed to improve significantly.
But, within a few weeks they began to return.
I took more medication, but it did not help and when the pains became severe enough, I actually went into the emergency room at St. Luke's hospital. They did several things, including a rectal contrast CT scan. Ultimately, the Dr. did another colonoscopy and announced that my colon and lower digestive track were not the source of my pains.
At this point almosty a year and a half had gone by and I was getting fairly frustrated, and was tired of the cronic, severe pain, which had expanded to include deep pains in my left hip (not the joint...more like muscle or vascular pain) running down my left leg, and buring pains and numbing around my rectum and scrotum.
As I was contemplating what type of new specialist to see, Gail and Becky indicated that the pains, particularly the buring and numbing, sounded like my sciatic nerve was either injured or being crimped and that maybe I should see a back/spine specialist.
In mid-August this was punctuated when a friend from work, who worked at one of the hydroelectric dams where I* develop and maintain electronics for the US government, explained to me his situation. The year before he had missed several weeks of work with a back injury that I had presumed was to his bone structure. As it turned out, it was vertebrae and disc problems that had pinched his sciatic nerve and produced pains very similar to what I was experiencing.
I determined to go in and see a specialist, but before I could, on August 31st, while on a call-out on top of a mountain working on some communication equipment, I stepped badly and blew out my left ankle. This was very painful and required some significant pain medication, time off work, crutches and a splint/stability boot that I wore until the 1st of November. This injury overshadowed my back pain and the pain pills served both purposes and so addressing my back problem was delayed as a result...which was propbably a mistake, but at the time we did not realize the full extent of the problem.
Anyhow, as the ankle got better, the back pain began to re-assirt itself and I ultimately went into the Spine INstitute here in Idaho in early November.
Based on the symptoms, this led to significant x-rays of the back. When those were analyzed they did not show the problem, so the Dr. ordered a couple of MRIs. Those MRIs were painful because I had to lay still on my back for about 45 minutes for each on a hard, stiff surface, that happened to coincide with the pains in my back...but I ultimately got through it.
A few days later the Dr. had me in to review the MRI. He said the good news was that my spine , spinal chord, and vertebrae all looked good. He couldn't see there any reason for a pinching or damage to my nerves. But, then, he said, here is the bad nbews. He pointed to a bone on the lower end of my back called the sacrum and indicated that it was discolored and not showing the right density of normal bone structure.
As a result of that, and another week of scheduling, last Thursday I was given what is called a CT directed biopsy of my sacrum. This involved taking multiple CT scans which guided the Doctor performing the procedure in where to use large needles (that look like bone screws) so he can take biospies of the effected bone. He took about ten samples, and on several occassions had to tap the device with a hammer-looking device in order to get it into the bone where he wanted to take the sample.
Before perfroming this procedure, this Dr. came in and spoke to us. He let us know that he had reviewed the MRI and that based on his 30 years experience that my condition looked very troubling and probably indicated some form of malignant bone tumor or tumors, perhaps a condition called multiple myeloma. He wanted us to know that the pathological report would either confirm or dispel that, but that we should know where could very well lead. I appreciated his candor.
After the procedure, Gail took me home. We were told that the results would be back on either Monday (today, the 21st of December) or Tuesday (the 22nd).
Upon arriving home, after the sedative wore off, I experienced immediate and very severe pains in my lower back, left hip area, behind my leg, my rectum and around my scrotum. The most severe pain so far. I am grateful Gail was with me. She helped me into the house and got me into as comfortable a position as possible. We had some hydro codone and some Endocet pain pills left from my ankle injury. The hydro codone did not do the trick and I quickly began using the Endocet.
I called the Dr.s office and left a message and also called Dr. Barry Smith, who is a good friend, and was our local GP for many years until he retired. He indicated, upon hearing all of this, that he would work with me, which I greatly appreciate because we know and emphatically trust Barry, who is also a Colonel in the Army Reserve.
That got me through the weekend and this morning we have received a call from the spine institute and are heading in there to get more powerful pain medication (Percaset) and to hopefully get the results of the pathology so we have a final diagnosis and can start treating this.
Please remember us in your prayers, particularly my family...wife (Gail has been an absolute trooper and rock in this for me), our kids and grandkids, brothers and their families, in-laws, etc. as we face this new chapter in life.
Sincerely and in Christ,
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2nd Entry December 21, 2009 6:00 PM
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Diagnosis is in. Malignant, primary Chordoma.
Not good news, but not as bad as feared with multiple myeloma.
Chordoma's are slower growing, do not spread as easily. They are not too responsive to chemo or radiation and the primary treatment appears to be to remove it.
Being on the sacrum, that can be tricky, depending on size.
Also, there is another similar tumor that makes it important and (IMHO) imperative to get a second opinion, one experienced with these types of tumors. Same goes for the surgical team that ultimately goes in. ie. it would be much better to spend the time and money to go somewhere where they are very experienced in treating these than to use a team not very experienced, or at all, with this specific type tumor.
I will be referred within a day or so to a oncologist and my guess is they will want to prepare for surgery ASAP...but will know more tomorrow, and will also speak forthrightly with them about the need for second opinions regarding the specific type tumor and for an experienced surgical team.
Gail's brother, who is a high level technical advisor (and a PA) in the VA, indicates that the best place for this specific type of cancer and its treatment is at the MD Anderson Cancer Center in Houston, TX (
http://www.mdanderson.org/). We will contact them tomorrow too.
Thank you all for your thoughts and prayers, I will continue to update this note as we know more.
Love, and in Christ,
Jeff Jeff