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Biography

I was leading a very normal life, raising my 3 wonderful children after a divorce in 1986. I was working 2 jobs, and never getting enough rest, but I always made time for my children and their activities, and I never missed any event in their life. This is something I am so glad this was my major priority. Fast foward: I was feeling much more tired that usual, running low grade fevers then it got to the point I KNEW I needed an EVALUATION. I heard the words no one ever expects,I had LEUEKEMIA and told that I had 3-5 years to live…What? DId I hear him right? What about my children, which at this time were 8, 10 & 15 years old. All my children were imediately tested as possible bone marrow transplant donors though none were a match. Though, I was warned beforehand, the chances would be slim. But, at this point slim was something. They started me on a drug to elevate my stem cells so they could do a stem cell harvest, which after 5 days of daily injections of nupregen and daily blood tests I was ready, so to phresis I went. Though it wasn’t unpleasnt at all and to this day my stem cells are frozen in the lab of the Cancer Center in the bad fortune that the leukemia would go into the accelerated phase, they would transplant them back into me. Sound simple? It’s not. It is extremely risky as a bone marrow transplant is. But, we continue onward. Right? I continued on this ugly drug named Interferon & Ara-C, which kept the Leukemia from progressing though I was always sick and in & out of the hospital. ( My youngest children do not remember a time that MOM wasn’t sick, this makes me so, so sad. For, I wanted them to have a happy & normal childhold, yet they have had anything but.) On a routine visit to my oncologist during an exam he asked me how long I had this lump, startled, I asked what he meant, he showed it to me where it was actually in my right axillary and very deep. He said that he wanted me to see a colleague that was chief of the Breast Center. He called him right then and I was sent over. I couldn’t hardly walk thinking this had spread to my lymph nodes. This great surgeon attempted several times to perform a needle biopsy, but it was too deep, in the office with no success and scheduled surgery for that next morning @ 6am. That day my dear Father took me along with my Pastor, I signed all papers that would be necessary to do whatever was necessary to save my life. Then we prayed. When I awoke, groggy, I was trying to feel if I still had a breast but all I could feel was heavy bandaging and a bulb syringe for the drain. The surgeon had talked to my Father and told him that I was extremely lucky that it was only heavy fibrocystic tissue. So, very releaved and happy to go home, I had no pain for I was so overwhelmed with joy I couldn’t feel a thing. Six months later, my Father died very suddenly. I was devasted. two months later during a routine exam another lump was again found in my left axillary, though this time I was much more prepared, though I didn’t have my Father to comfort me. I was very depressed. Once again, same diagnosis for which I was very thankful. That summer I noticed a scaly patch on my forearm which my oncologist wasn’t too concerned but thought I should see a dermatologist where he took a biopsy and yes, it was cancer. If you have done the math, about 8 years had already past. What did that Doctor know????? We had been following Novartis trying to get the FDA to approve this new drug for Leukemia, in clinical trials it was known as STI-571 now known as GLEEVEC! What a wonderful day, on May 10, 2002 it was passed. So, like so many times in the past my oncologist performed what is a very painful bone marrow biopsy to establish a baseline then I was started on this new miracle drug the following day. No more INTERFERON! JOY!All I suddenly had to do was to take 4 pillls per day. What a cake walk…..... Very mininal side effects. He had me stay on this dosage for one year before repeating the biopsy. I could not have been prepared for this. As always, the results takes about 2 weeks for a complete profile. I WAS IN REMISSION! I finally thought, now I can make plans again, what a MIRACLE I FELT! SO, though I had to continued on the same dosage, the next year was very normal. In 2003 yet another bipsy, once again even more into REMISSION.Though, I always still had Leukemia, for the only cure at this time is a transplant, which I was advised against this since I DO NOT have a related DONOR. This continued without much drama until July of 2005 when my oncologist performed a routine biopsy and everything went by the book though afterwards I was in pain that continued with each passing day. I waited a full 10 days, until it got to the point where I could not sit up straight or take a deep breath. I finally called my oncologist and he was very concerned, for he knew for me to call after hours, something was up. He said he wanted me to go to the ER immediately and he would call and they would be expecting me My daughter had to help me walk to the car. When we arrived at the Cancer Cnter they were waiting and took me right in. First was a very painful exam, then x-rays and several physicians came into the exam room along with 2 RN’S with IV’S and MEDS to talk to me. They said that they were not sure what happened but when the biopsy was performed T-7 & T-8 was fractured. What??? Did I hear that right? I had 2 fractured vertebra’s… Within a very short time, the IV had been started and pain medicine started then I became very groggy. The next day my oncologist had many tests scheduled. It seems that I now had osteoporosis and it was just a fluck from the pressure on the lumbar spine that this happened. SO, now I needed what is a new procedure called a “vertioblasty”, under local they inject a mattter to build up the veryebra’s so that I could once again sit up straight. This was a tough one, though I was able to be discharged that night. But, not before my oncologist informed me that much to his surprise the biopsy revealed that I was NO LONGER IN REMISSION! No, he didn’t just say that, did he? My daughter and I weeped and he hugged us both telling me that he is not givng up, not even close, that we would up my dosage another 200 mg per day. He said that we wouldn’t wait the normal year to repeat the biopsy that we would do it again in 6 months. I have had bone marow biopsy’s every 6 months since and I still am not in REMISSION again, though I know my day is coming. This all started in October of 1994. Who would ever think that a feeling of extreme fatigue and flu like symptoms would entail all of this. I was always very health conscious, never smoked, drank or used drugs. This made it difficult to understand, but it’s not for us to understand. But, as a reminder it is 13 years and counting, and they said that I had 3-5 years. Hah! They don’t know what a fighter I can be. But, given credit where it is due, I have a wonderful oncologist that has become my good friend. He is so wonderful & compassionate, and oddly enough we are the very same age. But, more than that I give the credit to GOD, for I prayed to allow me to be able to raise my children. What Mother’s worst nightmare is it to be given a death’s sentence at my children’s ages? I have taken my daughter’s favorite quote and chose to live by it: It’s not the amount of breaths you take, it’s the ones’ that take your breath away. If I canhelp anyone going through similar circumstances, please write me. NEVER, EVER GIVE UP!MAJOR UPDATE After havibg BMB every 3 months after learning that I was no longer in remission after 1 1/2 year of raising it to 800 mg daily a BMB revealed in Sept 2007 that I am back in REMISSION…...THANK GOD and GOOD MEDICINE

Cancer Symptoms

Low grade fevers, fatigue, extreme headaches, anemia, bone pain

Surgery Description, Dates & Side Effects

stem cell harvest,central line insertion,(1995) multiple bone marrow biopsies,(every 12 months, then 6 months, vertioblasty (2005) unable to breathe, stand up straight or walk.Sep. 2007 after raising my GLEEVEC dosage to 800 mg per day I am happy to say that I am now back in REMISSION Yeh

Radiation Description, Dates & Side Effects

No radiation

Chemotherapy Description, Dates & Side Effects

Interferon from onset- continued hospital admissions,recurrent infections, suppressed immune system
Gleevec May 2002 to present, minimal side effects, mostly nausea, malaise

Bone Marrow Transplant Description, Dates & Side Effects

No match found. All my children tested immediately after diagnosis. They are all in the Natl Bone Marrow Registry and all say they hope they are a match for someone at some point so that they can help them unlike their MOM never having a match to date.

Fundraising Description