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gil’s Story

For those of you not on my Email Express Service that haven't been getting my semi-regular updates, my medical adventure started in spring 2005 and has been a long and winding road. As of early April 2008, I think we have the ultimate causes figured out! More details below.

I found myself with increased blood pressure and reduced muscle stamina in spring and summer 2005. I initially figured it was me getting old but the high blood pressure had me concerned. I started a variety of tests which by the end of 2005 included blood tests for arthritis, a full blown pulmonary function test, a heart echocardiagram and a heart angiogram. No coronary artery blockage to speak of -- I have always had quite low cholorestrol and triglercyrides.

Just to throw a twist on things, my spleen did a spontaneous rupture in early January 2006 for not reason. No trauma that I remember but my blood pressure returned to normal immediately thereafter. After missing four weeks of classes at MSU, I resumed duties there.

My muscle stamina problem did not go away and slowly but steadily worsened. A trip to Stanford medical clinic revealed some undesired protein in my urine in spring 2007. Further testing in Bozeman led to a bone marrow biopsy in July that indicated I had what is called 'smoldering multiple myeloma' -- a cancer of the blood plasma. Smoldering means low enough grade it did not warrant getting treated yet. MM, as it is known, tends to rot one's bones from the inside out, cause anemia and serious bond pain, and damages the immunity system. Most folks with it die from infections.

I was referred to Wash Univ Med School in St Louis, that operates at Barnes Jewish hospital. I had a second marrow biopsy that confirmed the MM but also sample by DNA to read some chromosones that sometimes predict how aggressive the disease is likely to be. Fortunately, mine are all set for a slow progress and we have been doing survelliance via blood and urine tests since August 2007. None of those tests indicate any progression. Yippee-skippee!

The bad news is the muscles continue to decline. Another slew of tests indicated I had excess calcium in my blood -- apprently from the myeloma kicking it loose. Calcium is how our bodies tell our muscles to cool it when they are being overworked. Too much in the blood mean the muscles are being told to quit working even before they get tired.

A seond thing that results in about 20% of MM cases is called amyloidosis. The MM causes production of amyloid proteins that don't do much damage per se but plug up things like organs (heart, liver, kidneys most common) and the muscles and interfere with how they work. Left unfixed, they can cause fatal organ failures! Preferred treatment is the same as for MM -- a stem cell transpant with high-dose chemo.

So, as of 6/5/08, I have started the process at Barnes Jewish Hospital in St Louis. I had a three plug catheter installed on the right upper shoulder area so I don't get many needle punctures any more. Sounded bad but was a minor procedure with little pain. It is already starting to feel like it belongs. I also began my four days of growth factor shots yesterday. Two minor shots about like a flu shot to do two things. Turbo charge my blood marrow to produce an excess of stem cells (baby blood cells). And, to float those in my blood system, not buried in the marrow. (This used to be called a bone marrow transplant before they tricked the stem cells to get out into the blood system. A much easier way to harvest when they are in the blood itself.)

The possible side effect of the shots is some bone pain from the marrow working so hard. It usually starts the third day if it occurs and ends a couple days after the shots end (on Sunday). I am on a Tylenol routine to minimize that if it happens. Most people get at least some pain. I will let you know in future installments.