I had a mammogram in December of 2006 which showed “questionable” areas in my left breast.  After a return for an ultrasound the radiologist felt I needed to be referred to a surgeon.  On February 1, 2007, I had a “lumpectomy” for the two areas which were identified.  The doctor felt they looked fine and this would be the end of the problem and life would continue normally. When the pathology came back both of the lumps happened to be enlarged lymph glands.  The doctor had the “privilege” of calling to tell me he had good news and bad news.  I never expected the bad news to outweigh the good news by so much.  I never really felt concern for the biopsy.  I have worked in the medical community for more than 40 years, so I know most of these biopsies turn out to be routine cysts or tissue.  Not this time, no breast cancer, but leukemia.  Chronic Lymphocytic Leukemia (CLL).

After about a year with the oncologist I was referred to I went for a second opinion because they told me CLL was a wait and see disease.  I was not agreeing to wait and see.   They also told me I did not need a bone marrow biopsy because the lymph glands told us all we needed to know.   I did not know that we needed to know the particular DNA damage to be able to properly treat the disease. I trusted my doctor to know this.  But, I believe in being proactive in your care.  If you are uncomfortable with what you are being told, get a second opinion.  Do it just for your peace of mind.  I had to go out of town at the time because all the oncologists were in one practice and did not see each other’s patients.

 The doctor I saw for the second opinion wanted a CT scan and a bone marrow biopsy, along with a lot of blood work.  After a bone marrow biopsy, more than a year later, I learned that my specific DNA damage had a “poor prognosis”.  The doctor who did the bone marrow biopsy told me I was in for a “growling” chemotherapy and there was no way to know if it would help.  At his suggestion I came back to Tallahassee to be followed by a local doctor.  I was not comfortable going back where I had been.  I now see Dr. Amer Rassam of Tallahassee Cancer Institute, who is a very knowledgeable and compassionate person.   In the summer of 2009, I began the chemotherapy which consisted of three medications: Ritxan, Fludura, Cytoxan.  On the first day of each round of treatments all three medications were infused, along with an antihistamine, anti-nausea medication and a steroid.  The next two days were only two medications with the “little extras”.  Then I would get a three week break before the next round was administered.  This continued for seven months.  It is scheduled for 6 months, but I developed an infection after two rounds and had to be hospitalized for two weeks and had to skip the treatment that month.  I completed the definitely “growling” treatment in December of 2009.  In January 2010, I was hospitalized for another week for neutropenia (I had hardly any neutrophils).

In the spring of 2010, the doctor told me it was time for me to look into a stem cell transplant.  I was referred to MD Anderson Cancer Center in Houston, Texas.  After more testing I was told I am a candidate for stem cell transplant and the testing of my family was begun.  I only had one sibling who qualified as a donor, but she was not a match.  After going through the National Bone Marrow Registry and testing for me we learned that I have “rare” antigens and there was no match.  By my three month follow up, one match had been found, but only a 9 in 10 match.  My chemo therapy has been so successful it is too dangerous, in relation to my current health, to chance anything less than a perfect match.  The search is on.  We have been looking for over a year for that perfect person. (If you are between the ages of 18 and 60, go to bethematch.com, complete the questionnaire and see if you are my match.  If you are not between those ages, or you are rejected as a donor for some reason, you can help with a contribution to help register the people who can donate and the registry’s processing of the registrations.)

In January 2010, I had my yearly mammogram (and ultrasound, as it happens) and there were some probable calcifications and I was returned to the surgeon to consider another biopsy.  Because there were so many areas it was decided we could not biopsy all of them and it would be like “looking for a needle in a haystack”.  The recommendation was to repeat the mammogram in six months.  This was done in July, and there was now a small lump in the lower portion of my left breast.  I was sent for a needle biopsy, but the lump was solid, so nothing could be aspirated.  I was scheduled for another biopsy, lumpectomy.  With plenty of margin removed to assure a good biopsy and the doctor feeling good about the outcome, he got to make another phone call, without the good news portion this time.  None of the margins were clear.  Cancer all the way around.  Ductile carcinoma in situ.  Since part of my leukemia is the lack of a tumor suppressant gene, I opted for a bilateral mastectomy, which was approved by my insurance.  Surgery was scheduled for August 11, 2010.  I stayed three days in the hospital. The biopsy report now showed the cancer was in my entire left breast, now called Ductile Carcinoma Infiltrate.  December 20, 2010, I began reconstructive surgery.  I am almost finished with that process, as of June 2011.  I am truly pleased with those results.

As a result of the deletion of the tumor suppressant gene and the occurrence of a cancer other than the leukemia, I must keep a close watch for other signs of cancer.  If you are over 50 and have to have colonoscopies every five years consider this,  now I have to have mine once a year.  I have blood work and CT Scans every three months and a bone marrow biopsy every six months.  Remember to count your blessings.

When I think of counting my blessings the ones that come to mind are my wonderful caregiver husband, John, my children, my grandchildren, my mother, my siblings, my friends, my fellow church members, my worldwide prayer warriors and my cancer.  I know, “She counts her cancer a blessing”.  After my first visit to MD Anderson Cancer Center I realized how blessed I was with my cancer (that was before the breast cancer, but I still feel the same).  No matter how bad you think your situation is, you have only to look around at any place in the center and you will understand.  Not only was that visit an eye opener, but through my journey I have learned to reevaluate what is important in life and now understand so much more about eternity.  Everyone dies, no one lives forever.  When I think that I was told I have a terminal disease, I realize we are all terminal, we were born that way.  None of us is promised tomorrow, but we are promised eternal life. 

When you have medical treatment everyone protects your dignity and privacy.  I tell them they can give me chemotherapy in the middle of the mall if it would help someone else.  I will talk to anyone about my cancers, treatment and reconstruction.  We need to be supportive of each other.  My friends who have been through cancer treatment tell me they appreciate my calls because people who have not experienced cancer and treatment are uncomfortable talking to you, and are afraid they may say the wrong thing.  Support your friends through their treatment and survivorship.  Talk about the real issues and do not be afraid.  Let them tell you how they really feel and talk about their fears.  Think of them as prayer requests.

There is a bicycle ride here in Tallahassee that was founded by a cancer patient and his family.  It benefits the local cancer center and is called the "Ride for Hope".  This year (2011) I am honored to be the "Hero for Hope".  Because of my cancers and my need for a stem cell transplant there has been a focus on the National Marrow Donor Registry.  My friends across the country have become more aware of the Registry since my diagnosis and have helped bring more attention to the Registry and becoming a donor.  Of course, we hope to find a donor with those “rare” antigens I possess, but hopefully many others will find donors because of these efforts.  One of my cousins became a donor this past year due to this emphasis.  I am so thankful for the opportunities I have had because of my diagnoses.

I am as excited today about birthdays as I was as a child, and do not forget it.  Learn to count your blessing (and your years).