Myelodysplastic Syndrome

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.

Myelodysplastic Syndrome (MDS) is an insidious group of diseases that basically destroys your immune system and bone marrow. MDS is creeping its way to the top of the “quickest growing in occurrence” list. It is one of the hardest diseases to diagnose for Doctors and Pathologists. More and more families are becoming aware of MDS because people they love are being diagnosed with it every day. MDS affects 300,000 people worldwide killing 60,000 to 70,000 a year

It is your typical “Gray Area” disease, because very few research dollars have been allocated to finding exact causes and treatments. This has resulted in a “no cure disease.” Unfortunately, this is the way that all catastrophic diseases have gotten their start. “Frightening” to say the least, as there are approximately 13,000 new cases diagnosed each year, with that number expected to rise dramatically over the next few years.

Some MDS patients, under the age of 60, can be treated with a Bone Marrow Transplant, but many can not. Persons over the age of 60 have fewer options. There is a high rate of MDS turning into Acute Myeloid Leukemia.

White Blood Cells, Red Blood Cells, Blood Platelets, Hemoglobin and Hemocrits are all affected by MDS. Severe Anemia, Hemorrhage and Infection are resulting trademarks in many cases. Most MDS patients suffer from one chromosome abnormality or another. Persons with MDS usually become Immune Suppressed and are forced to change their lifestyles to ones of “Isolation.”

Mike was finally diagnosed with MDS in January, 2006, following BMB number five. The Dr. felt that we would just take a wait and see approach and watch his blood counts. There was no treatment and no blood transfusions given. His counts continued to fall. The diagnosis was given with the assumption that his disease had been caused by radiation or chemical exposure in the work-place, or possibly a medication he had taken.

Several months passed, and no further BMB was done. His Platelets were getting lower and I began to worry. We were told that Mike had incurred some type of chromosome damage probably caused by radiation or chemical exposure. After watching and reviewing all of the previous BMB results and continuing blood tests, we were told that they didn’t feel that discussing a MDS to Acute Myeloid Leukemia transformation was important, as Mike would have virtually no chance of that happening.

We spoke extensively to our Dr. as well as the Stem Cell Transplant Dr. about having that procedure. It was a very high risk option, but our only hope of a cure. Mike had some HLA Testing to determine what kind of donor match that he would need. His brother was tested immediately, and did not match. We had Mike’s HLA results run through the National Bone Marrow Bank and unfortunately there was no match. When would life quit being so cruel?

In late April of 2006, at my insistence, a new BMB was done. Mike’s counts had been falling at a pretty steady rate and I was scared. On May 1, 2006 we went to the Dr. to get the results. It was one of the darkest days in our lives. We were told that Mike did have Acute Myeloid Leukemia and the prognosis was not good.

After the initial shock, we asked what our options were. The Dr. explained the short list of things we could do, and we decided to take the risk of Ara-C and Daunarubicin Chemotherapy. It would require an approximate 28 day stay in the hospital in isolation.

We welcomed our first Grandchild on Saturday, May 6, and left on Monday to begin treatment. What an emotional roller-coaster the week had been. When Mike was diagnosed with MDS, I did extensive research to locate one of the best Doctors in the country that treated it. He was located 260 miles from our home which required an overnight stay every time he had an appointment. His Chemotherapy was done at an adjoining University, which meant we would be away for approximately a month.

Mike did well with his Chemotherapy and was able to return home within 28 days. He was still very Neutropenic, which meant that his White Blood Cell counts were very low and that any infection or sickness could be easily gotten. Therefore, we began our long journey of “isolation.” That meant that he could not go to stores, movies, restaurants or even church. We could not even see our family or friends due to such a high risk of infection. It was just he and I and the confines of our home and car.

It took a good 6weeks for Mike to regain strength. By the 8th week, he went back to the hospital for a Consolidation Chemotherapy that lasted approximately a week. Again, we were dealing with Neutropenia. More isolation.

Within 3 days of our return home, Mike was rushed to a local hospital with a fever of 104.7. He had become “Septic” from the bowels in his own body. It was touch and go, but Mike was able to survive. Thank you God again.

Today, 19 months later, Mike has gone full circle in MDS. He had beaten it all for about 6 months, and now the MDS is back. He is undergoing a new type of Chemotherapy that requires us to go the Dr., everyday for two weeks out of the month.

People all over the country and around the world are experiencing devastating effects from this disease of “isolation.” When their White Blood Counts are low, a simple cold can kill them. When their Red Blood Cells are low, it produces low Hemoglobin, which takes away all their strength. When their Platelets are low, they can hemorrhage at any time. Many patients can only survive on blood or platelet transfusions on a regular basis. This lends them to yet another serious risk, iron over-load.

I have not told our story to you for sympathy, but to let you know about this dreadful disease. It is quickly on the rise, and there needs to be an all out effort put forth to fund research and development into medications and treatments to address it.

You can join the fight by going to fightmds.com to learn more about this disease and to send a support letter to Congress. Please consider the difference you can make in thousands of lives now and perhaps the life of someone you care about in the future.

Mike and I continue our life of isolation, and as a team are fighting for his life. We will be celebrating 40 years of marriage on May 12, 2007. You may think you know all there is to know about someone after that many years of marriage, but you don’t. I never realized what strength and courage Mike had, until this battle. He will forever be my, our children’s, and our grandchild’s real life hero.