THE “ISOLATION DISEASE”
“When you reach into your heart, you can find the courage.” In May of 2005, my husband Mike reached a milestone in his life. He retired, after working for more than 50 years. It was a little bit early, according to retirement standards today, but we tried to manage financially for years to get to this moment. Mike would turn 64 in October.
It was in the early morning hours on August 1, 2005, that our life changed forever. Mike was awakened by some sharp pains in his lower abdomen and extremities. He thought once he was up that they would pass. Unfortunately they got worse. About 9:00 a.m. the pain had worsened and we decided to go to the Emergency Room at a local hospital.
After the routine probing and prodding by the Doctor, blood tests were ordered. The Attending Physician said that Mike probably had kidney stones that were trying to pass. No life-threatening emergency, but a lot of pain.
A Cat-Scan was ordered, and since I am a Diabetic that had not had insulin nor food yet that day, I decided to go back home to take care of me, before I got into trouble. It was only a seven minute drive home, so I knew I would most likely be back before Mike was from his testing.
One half hour later as I re-entered his Emergency Suite, I overheard the Dr. asking Mike if he was a heavy drinker or if he had any trouble with his blood counts in the past. He replied “No” to both questions. I asked if there was a problem with his blood counts and the Dr. said they seemed to all be lower that normal. He said not to worry, but to follow up with our Primary-Care Physician as soon as possible.
When we returned home, I called to secure an appointment for Mike, with our Primary-Care Physician. We went to see the Dr. and he said there was quite a change since his last blood test, but we would wait two weeks and do another and see how the counts looked then.
A long two weeks passed and Mike was re-tested. This time the Dr. was visually more concerned as the counts, (White Blood Cells, Red Blood Cells and Platelets) were all very low. He immediately referred us to a Hematologist.
When I called for the appointment with the Hematologist, the receptionist answered the telephone with: Good Afternoon, Cancer Clinic. Once I was able to speak, I made the appointment. The Dr. did not mention that there was any Cancer Clinic involved with the referral.
About 1 week later we were introduced to a whole new world. As we entered the office, we realized that this was going to be something totally different from what we were used to. Many of the patients in the waiting room looked pale, exhausted and many had lost their hair. It really brought us to the harsh reality that we had just crossed the line into more serious conditions.
We were assigned to a young Dr. who explained that Mike's blood counts could be affected by many different situations. It could be that his body was not metabolizing Vitamin B-12 or Folic Acid correctly, or a list of things as long your arm. We chose to select the faulty metabolizing as what we would hook our prayers on. After a good physical examination and many health questions, we were told to visit the hospital the next morning for extensive blood tests.
The blood work was completed the next morning, and the first of what would be many, anguished waiting for result periods began. One week later, we were called from the Dr.'s office to come and visit to discuss the test results. With a lump in our throats, and hearts beating quickly, we listened as the Dr. said that his metabolism was fine, and there was a possibility that this was a chronic form of Leukemia, or perhaps Myelodysplastic Syndrome. A disease we had never heard of.
We went on to hear that the only way to diagnose the problem would be to get a Bone Marrow Biopsy (BMB in Dr. Terms). I don't know how familiar many folks are with this procedure, but it involves inserting a long drill needle into the bone in your hip and extracting marrow for testing. Not usually a very pleasant experience for anyone.
The procedure had to be done not twice, but four times on different occasions, and produced no specimens that could be adequately diagnosed. During this time, approximately four to five weeks elapsed, since the Dr. did not want to really tell us that these tests were in vain. The meetings we had with him focused on Mike “probably” having Myelodysplastic Syndrome.
