TOP TEN SIGNS THAT YOU HAVE BEEN DIAGNOSED WITH A RARE CONDITION

1.  Your doctor writes down the words WALDENSTROM'S MACROGLOBULINEMIA and tells you not to worry, many people live a long time with this blood cancer.  (Hmmm...... apparently that means that many people do not live a long time........)

2.  Your doctor friend tells you that in medical school, the students nicknamed the condition "Wooly Mammoth" just so that they could remember the name.

3.  You literally spend hours saying the words one syllable at a time, until you can finally say it.

4.  You look up your cancer ribbon color and there isn't one!

5.  In the United States, approximately 1,000 cases are diagnosed each year.  On an average, three Americans in a million will be diagnosed with WM.

6.  The only way to diagnose your disease is by a bone marrow biopsy!  Never had one?  Don't ask!

7.  The best way to describe your cancer, is that is a hybrid which has similarities to multiple myeloma (a cancer of the plasma cells) and non-Hodgkin lymphoma (a cancer of lymphocytes.)  You hit the jackpot by having BOTH - a lymphoplasmacytoid.

8.  You learn that the lab cannot even perform a normal CBC on your blood.  Because of the large number of tumors in the plasma, these heavy cells must be removed for accurate lab results.  Before a blood count can be verified, the blood must be placed in a spinner.  The plasma rises to the top, is removed, and replaced by saline.  Only then, can the correct hemoglobin level be determined.  

9.  You enter the infusion center for your first treatment and 4 out of the 5 oncology nurses have never heard of your disease.  The one who has been in the business for 16 years, says she has helped TWO WM patients during her career.  During your infusion, the nurses gather around you, while you teach them about your condition.  (This does NOT add to a feeling of security and well being!)

10.  Young doctors look at you with interest and say, "Waldenstrom's Macroglobulenemia....... YOU are my first!"  True Story:  During a routine office visit, a young intern was shadowing my doctor.   As he began to question me about my treatment, he turned to the young doctor and said, "Oh, by the way, Mrs. Lollar has Waldenstrom's Macroglobulinemia."  Looking slightly confused, she uttered a polite "oh."  I began to wonder if she had ever even heard of WM.  I ask the young intern, "Have you ever heard of WM?"  She answered,  "Yes, but YOU are my first!"  She had a smile on her face.  I got the feeling that I would be a great specimen in a medical class.  As I left the doctor's office, I overheard him giving the young intern a lesson about the diagnosis and treatment of my disease.  I felt like a medical freak.

For almost nine months, I have lived with the knowledge that  a very rare invader has moved into my body - an incurable blood cancer that very few had even heard of.  The emotional ups and downs have certainly been more difficult to deal with than the physical effects until now.  Adding foreign chemicals into a body hosting a crazy disease makes for some very interesting effects.  During this time of treatment, I do not know what to expect from my body from one day to the next.   One day, I am lying in bed with fever, aches and chills.  The next day, I wake up with my eyes swollen shut.  The next day, I feel almost normal.  I try to find the humor in each situation...... laughing is so much better than crying!  I hope you've enjoyed some of my medical freak funnies.  Keep praying for me as my treatment continues.  I'm working real hard to keep the smiles coming.

"A merry heart maketh a cheerful countenance;

but by sorrow of the heart the spirit is broken."

Proverbs 15: 13

"A time to weep, and a time to laugh;

a time to mourn, and a time to dance."

Ecclesiastes 3: 4