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My name is Rebecca (Becky) Duncan and I am a myelodysplastic syndrome survivor.

The following is part of the report that was given to Dr. Cynthia Rutherford, from the lab, at 2:20pm on December 20, 2017, after an initial appointment with her on December 14^th and then a bone marrow biopsy on December 15^th.

Diagnosis:

BONE MARROW (ASPIRATE, CLOT, CORE BIOPSY, AND2%) PERIPHERAL BLOOD):

- HIGH GRADE MYELODYSPLASTIC SYNDROME WITH INTERSTITIALLY INCREASED CLUSTERS OF BLASTS (10-15%) INVOLVING A HYPERCELLULAR BONE MARROW (50-60%)

- GRANULOCYTIC DYSPOIESIS AND MEGAKARYOCYTIC DYSPLASIA

- FOCAL INCREASE OF RETICULIN FIBROSIS.

- PERIPHERAL BLOOD: PANCYTOPENIA WITH LEFT SHIFTED GRANULOCYTES AND RARE CIRCULATING BLASTS (2%)

- SEE COMMENT

Comment:

Evaluation of the hypercellular marrow reveals marked interstitial increase of clusters of blasts (10-15%) by immunostains of CD34 and CD117. There are background of granulocytic dysplasia and megakaryocytic dysplasia. Erythroid dysplasia cannot be evaluated in the hemodilute aspirate. Overall these features are consistent with high grade myeloid neoplasm most like myelodysplastic syndrome with excess blasts-2 (MDS-EB-2); however, an underlying evolving acute myeloid leukemia with dysplasia related changes cannot be ruled out. Correlation with pending cytogenetics is recommended.

Well…   S-H-I-T!

 I had just driven into my garage in Tyler, Texas with my sleeping granddaughter, Claire, in the back seat, when I received a personal phone call from Dr. Rutherford.  It was Thursday, December 21st, 2017.  After verifying that she was, in fact, speaking to me, she said, “Why didn’t you come into our clinic sooner?”  Now, you know that isn’t a ‘settling’ question.  As I recall (I did not record the phone call), she told me that I probably had one of two diseases and a couple of choices.  Since it was already into the Christmas holidays, I could either wait until January 2, 2018, and call back to make an appointment with Dr. Vusirikala or I could allow her (Dr. Rutherford) to go ahead and make an appointment with Dr. Vusirikala for January 2, 2018 (to speed up the process).   I chose the latter. 

 Of course, I told my husband the evening of the phone call.  Now I have a big decision.  How and when do I tell my two adult children, who live in different cities?  I wanted to tell them at the same time, preferably in person.  We were all going to Dallas to celebrate the birth of Christ two days later, on Saturday. So, as I stood with my husband on the steps of my sister’s home, across from the house where I grew up, I told my daughter and son and daughter-in-law that I had a very rare blood disease. About an hour later, after lunch and after most of the guests had gone to their own homes, I told my inner circle (siblings, in-laws and ninety-eight year old mother).   

 Let me back-up a little bit and tell you that I have read that MDS is not a disease that happens quickly.  That was certainly my experience.  In January 2012, five years before I was formally diagnosed with MDS (Jan. 2, 2018) my White Blood Count (WBC) was 3.9 (normal=4.5-11) and my Red Blood Count (RBC) was 3.92 (normal=4-5.2).  Beginning in 2014 my PCPs began sending me to Hematologists to be ‘checked-out’ and every year those specialists would say to me, “I don’t know why your doctor (PCP) sent you to me.  There’s nothing wrong.  Just start taking Vitamin B12 shots.”  So, I did.  Year after year.  Finally, a very astute PCP sent me to a Hematology/Oncologist who began, in February 2017, running lots of blood tests.  She was having trouble diagnosing the issue.  In August, 2017 she referred me to UTSW.  They had a waiting list of four months.  I’ve already explained that my initial appointment at UTSW was December 14, 2017. 

In my personal life – I was still working for a not-for-profit organization in Tyler in September 2016 and was capable of fulfilling my duties.  I was, also, lucky enough to have a supervisor who allowed me to break my one hour lunch into two parts: thirty minutes eating at my desk and thirty minutes resting on the small sofa in my office.  I thought that at sixty-six years old I was just slowing down and should consider retiring.  I did retire the next May, 2017.  Side note: my mother broke her hip, for the first time, on the day that I retired.  I spent the summer driving back and forth, from Tyler to Dallas, helping with my mother’s rehabilitation.  In August my husband and I and friends took a cruise from Boston, up the northeast coast of America and down the Saint Lawrence River.  There were days when I thought that I could not take one more step.  Unbeknownst to me, my MDS was raging.  I was chairperson of our church mission team, singing in the church choir, teaching our Sunday School class and loving on my one year old granddaughter as often as possible.  I was seeing a chiropractor, a pain management doctor, a massage therapist and having steroid back injections for the severe pain in my lower back and my hip.  This brings us to December 14 and my appointment with Dr. Cynthia Rutherford at UTSW. 

 I’d like to go back to the Christmas celebration in Dallas where I told my family members about my MDS diagnosis.  That evening my husband felt ill and drove back to Tyler.  I stayed at my daughter’s apartment with my son and his family and we drove back to Tyler on Christmas Day, two days after my husband.  By that night I was very sick and my husband took me to the hospital in Tyler, where I was tested for the flu.  The test was negative.  I begged the ER doctor to admit me to the hospital.  After the ER doctor spoke to Dr. Rutherford about my MDS diagnosis, he agreed to admit me for ‘dehydration’.  At this point I want to remind everyone that the 2017/2018 flu season in the U.S. saw an estimated 41 million cases of flu, 710,000 hospitalizations and 52,000 deaths reported by the CDC.  I stayed in the hospital for six days.  I am convinced that, had I not been in the care of the hospital, I would have died of the flu. 

 My MDS treatment, and subsequent stem cell transplant journey, began on January 2, 2018. 

 My husband, Glenn, and I left Tyler on January 1^st expecting to stay one night in a Dallas hotel near the hospital district.  We, along with our daughter, Stephanie, had an appointment with Dr. Vusirikala at the UTSW Simmons Cancer Center on Tuesday, January 2^nd.  Our son, Scott, stayed on the telephone listening to all of our conversations.  We were ‘interviewed’ (for lack of a better word) by four people that day: Nurse Paul, Nurse Charlsee, PA Jaime and, finally, Dr. V.  Many of the same questions were asked over and over and over again.  We assumed that they were deciding whether to allow me into this exclusive club of people who could receive very difficult treatments and, ultimately, a stem cell transplant, the only cure (at that time) for MDS.   We would come to find out that the next many months would require a strong patient AND a strong support system. We were given a tour of Clement University Hospital’s Transplant Unit.  We passed.

The next Tuesday a med port was ‘installed’ in my chest and treatments began the very next day.  I underwent five consecutive days of Dacogen Infusions.  Dacogen (decitabine) infusion is an intravenous chemotherapy treatment used for certain blood and bone marrow cancers, such as MDS. It slows the growth of cancer cells.  I went home on Monday, January 15^th, and by Tuesday my blood pressure skyrocketed to 165/103.  Thursday was the first of many future, weekly drives to and from Dallas for BMT (Bone Marrow Transplant) Clinic lab draws.  My Marvin Church Mission Team friends took turns driving me to and from those appointments. 

No big deal, right.  I kept my nail and hair appointments (very important).  I continued to sing in the church choir.  I continued to keep our granddaughter, Claire, periodically. 

The first Monday of February, March and April my friends or family members would drive me to Dallas for appointments with my oncology team (Dr. V; Jaime; Charlsee; Paul), blood draws, to watch the progression of my MDS and then Dacogen infusions for five days after that.  It was lucky for me that UTSW had a satellite clinic in Ft. Worth, where my daughter, Stephanie, lived and worked.  She would get me to and from my infusions and I spent those nights with her in Ft. Worth.   Now would be a good time to let you know that Stephanie is a pediatric oncology nurse at Cook Children’s Hospital in downtown Ft. Worth.  She would become my main advocate in regard to translating medical information told to me by doctors or nurses over the next many months.  The rest of the Mondays in February and March were spent with friends driving me to and from Dallas for lab draws at the clinic.  Through February and most of March I was still going and doing the things that were normal to our life (before the cancer diagnosis).  EXCEPT – I began to plan for the loss of my hair.  I took my friend, Renee, to help me try on wigs.  I began to take medication for depression.  Our friends were bringing meals to us several times per week. Glenn and I had dinner and conversation with a former MDS patient.  By the end of March my MDS was getting ‘the best’ of me.  My first blood transfusion was on March 27^th and two days after Easter, April 3^rd, the number of blasts in my blood had increased so much that I had a new diagnosis: Acute Myeloid Leukemia (AML).

I was admitted to Clements University Hospital, on the transplant unit floor, on April 5^th and usually describe the month of April as the time that ‘they’ tried to KILL me.  They actually were trying to kill all of my sick stem cells, so that a healthy donor’s cells could be introduced in the month of June.  I had already registered for a transplant and at some time early in my hospitalization a PICC (peripherally inserted central catheter) line was placed in my right arm.  That was an ordeal.  After several attempts to put the line inside a vein in my arm, up, around my shoulder joint and into the larger veins near my heart, the young man said, “If I can’t get it the next time, I’ll have to go to your other arm and try.”   Well…  S-H-I-T.

For the duration of my hospitalization I would receive a chemotherapy called “7+3 Induction.”  I have to tell you that I don’t know what that means.  I think that it is the type of chemotherapy ‘cocktail’ that was made up especially for me.  I didn’t feel very special.  I had that cocktail 24 hours a day, 7 days a week.  On April 21, after I found hair on my pillow, I decided to do something fun with my kids.  Stephanie shaved one side of my head with clippers and Scott shaved the other side.  I had short hair anyway, so what they created was a GREAT Mohawk style haircut.  

Glenn was still working as a real estate appraiser, owned a business and had other appraisers and an office manager to think about.  He couldn’t just retire and take care of me.  What he could do was work remotely, even in 2018.  So, he bought a lap top computer and worked from my hospital room.  When he had to return to Tyler for work my daughter or sister or friend stayed in the hospital room with me.  I don’t remember ever being alone.  I received 206 cards before I left the hospital on May 5^th.  You can see, in the photo, that I had an incredible view of downtown Dallas.  The days between the middle of April and May 5^th were very difficult.

 Not only was I being pumped full of chemotherapy every hour of every day, but I had multiple platelet and blood transfusions.  My family helped me walk the halls of the transplant unit so that my muscles would remember how to move.  Around and around and around we would go – me, Glenn and my medicine pole with bags of fluid attached to my PICC line or my med port. 

When I was finally discharged from Clements and allowed to go back home on May 5^th, I thought that I could rest.  I knew what was coming in June – a stem cell transplant.  But, no, resting at home was not ‘in the cards’ for me.  On May 10^th I was admitted to a Tyler hospital with 102.9 degree fever, swollen and painful left arm, wrist and hand.  Glenn had to help me get from our bedroom to the car.  I could barely walk.  I would not allow anyone to touch my arm or hand.  You can imagine that I knew a little something about pain – right?  But, that was the worse pain that I had experienced up until that day, including the birth of two children and a month long infusion of chemotherapy.  I spent the next six days in a Tyler hospital with hematologists, oncologists, a rheumatologist and general practitioners trying to diagnose my condition.   The final diagnosis?  Pseudo Gout.  It can be triggered by stress. 

 A week after being discharged from our Tyler hospital I was back at UTSW meeting with a village: a pharmacist, finance director, transplant coordinator, social worker, dietician, Dr. Vusirikala and, of course, nurses and physician assistant, Jaime.  My care team had not been ‘sitting on their hands’ while I was being pumped full of chemo and experiencing pseudo gout.  No indeed.  The transplant unit had found multiple potential stem cell donors.  Two of them were perfect matches.  We would come to find out that more than one potential donor is needed to be secured, just in case the #1 donor gets sick; goes on vacation; changes her mind. I would undergo ten more days of oral chemotherapy (cost?  $1,179.03) and was admitted back to the eleventh floor (transplant unit) on June 7^th, when I would have what is referred to as a Trifusion Line placed in my chest.  I think that it might be called a ‘central line’.  I would call it my ‘life line’.  I was very, very sick for the days leading up to my transplant.  More, different, chemo.  More sickness. 

I was being prayed for by many people.  The church where we attended and other Methodist churches in Tyler spent a week every summer doing mission work around the area where we lived.  Every day the teams would gather for lunch at one of the churches. They were praying for me all the time.

 Do you know that there is a countdown to when someone receives their stem cell transplant? Minus 8; Minus 7; Minus 6; Minus 5; Minus 4; Minus 3; Minus 2; Minus 1; Transplant Day.  Whoops!  Not for me.  My generous, nineteen year old donor was in Sweden and so small that her doctors couldn’t collect enough stem cells in one sitting, so they had to bring her back the next day to collect more.  Want to know how many stem cells were collected?  About 7 million!  Want to know how those stem cells got to me?  A manager from Carter Blood Bank in Dallas flew to Sweden, waited for the collection to be finished, put them in a cooler with dry ice, got back on an airplane, landed in Dallas and brought those 7 million stem cells to Clements University Hospital.  My family was with me at 8:15pm as 5.3 million stem cells were infused into my body.  The remainder of the stem cells were frozen at the blood bank, in case I need them in the future.  At some point the infusion was slowed down.  I can’t remember if I began to have a little trouble breathing, I started coughing or what the issue was.  

Then the days are counted up: Transplant Plus 1; Plus 2; Plus 3….  You get the idea.  More chemo on days Plus 2 and 3.  On day Plus 4 I began taking rejection medications. 

Interesting fact – when you have a stem cell transplant, your DNA becomes that of your donor’s.  Isn’t that wild?

 From that point forward my family didn’t leave me by myself.  If Glenn had to go back to Tyler for work or something with our house, someone else would spend the night.  There were not very many funny things that happened while I was in the hospital, this month or in previous months.  I couldn’t eat.  The smell of food brought into my room made me sick.  We finally discovered that if the kitchen staff took the lid off the food plate before entering my room, I was less like to get sick or need to cover my nose.  Before this ordeal was all over, I would lose forty pounds.  I understood why my PA, Jaime, on January 2^nd, shook her finger at me and told me not to go on a diet.  I was cold ALL the time.  I hated taking a shower or even being wiped down with the cleansing cloths.  I do need to tell you that the aids who helped me with those chores were great at their jobs.  They were fast and efficient.  They kept the parts of my poor body that were not being cleaned at that very moment covered.  I even had to be helped to the restroom by two aids, one on each side of my weak and sickly body. 

Let me interject here – my mother was ninety-eight years old at that time and very frail.  She was also as thin as a rail and her skin hung on her poor, old bones.  So, that was the set-up for what happened on one of the nights that my sister spent the night at the hospital with me.  My wonderful aids helped me out of bed to go to the restroom and the back of my hospital gown was opened.  From across the room and behind me, my sister yelled, “OH, MY GOD.  YOU DO LOOK LIKE MOTHER!”  Well…. S-H-I-T.

When I was able, I began physical and occupational therapy.  My family started ‘dragging’ (exaggeration) me around and around the transplant unit floor again.  Oh, by the way, I couldn’t leave that floor and people had to be screened in order to be allowed into that wing.  At some point I was given Phenergan, a medication to combat nausea, vomiting, allergic reactions and other things.  Well, while I was sitting up in bed talking one day, I began to jumble my words.  I knew that I was doing it, but couldn’t help it.  The Floor Nurse (head nurse) was called and the issue resolved, but that was scary. 

 On July 4^th we had some of the best views of the fireworks in downtown Dallas.  I was discharged from the hospital on July 6^th.  Did you know that transplant patients, at that time, had to stay near the hospital for 100 days?  That meant that Glenn and I couldn’t go home, to Tyler.  It is one hundred miles east of Dallas.  We couldn’t stay at Stephanie’s apartment near downtown Ft. Worth.  That was also too far away.  The transplant coordinators arranged for us to rent an apartment, a few blocks from the hospital.  I can only guess (I have never investigated the cost) at what the year 2018 cost.  Most of it was paid by Medicare Insurance and our BCBS of Texas supplement insurance.  You know, I haven’t talked much about God in this ‘remembrance’, but I certainly believe that God had his hand on me the entire way.  Not only was He ever-present for me medically, but also financially.  One of the things that was not paid for by our insurance company, was the rent for our small apartment (and some of the chemotherapy).  People at our church, mostly long-time friends, but others that we didn’t know, asked if they could help with our financial burden.  Almost the exact amount that we ended up owing for three months in our Dallas apartment, was collected for us from caring and compassionate people in our home town. 

 I had more platelet and blood transfusion over the next three months than I care to remember.  More bone marrow biopsies, too, than I want to remember.  I had blood draws at least weekly.  Glenn and I visited the clinic every week, sometimes multiple times per week.  Our good friends would drive from Tyler to visit, play games, and bring food.  They would even let me win at the games.  I have already told you that 206 cards were mailed to me during (and, before) April.  I received 229 more cards between June and December. Those months in the apartment dragged on and on and on.  I was taking a lot of pain medication, including Fentanyl pain patches.  When it came time to be weaned off of Fentanyl, the nurses used patches that had less and less medication.  Finally, the last past was removed.  That night I could not sleep.  I could not lay down.  I paced.  I itched, like something was crawling on me.  I was so tired that I could hardly stand, but still I paced.  Even, days later, I didn’t realize that I had become dependent upon that terrible, but wonderful drug. 

We moved out of the Dallas apartment on October 5^th and went back home.  Of course, that wasn’t the end of my visits to UTSW for blood draws, platelet and blood transfusions, pulmonary tests and visits to my incredible care team.  Toward the end of the month I was able to go to Broken Bow, Oklahoma, with my family.           

I thought that I was on my way to wellness.  We spent Thanksgiving with my extended family in Rockwall, Texas, and then went to Ft. Worth to spend the weekend with our daughter, Stephanie.  A long outing on Black Friday proved to be a bad idea.  Walking home from Sundance Square in downtown Ft. Worth, I tripped, fell and broke my left humorous (upper arm bone).    Well…   S-H-I-T.

 At sixty-seven years old I had my first ambulance ride.  I was admitted to Harris Hospital in downtown Ft. Worth.  My left humorous was put back together with pins and a long rod on the following Monday.  I went home a week later, unable to lift my left hand.  For months I didn’t know whether I would regain the use of my hand.  I was, however, able to help with a Christmas party for foster children in the Methodist Children’s Home network and their families.  I didn’t need my hand to pretend to be Santa’s elf.

 So ended the Year 2018.

I’ll end by telling you that after several months of physical and occupational therapy, I did regain full use of my left arm and hand.  The nerves just needed time to heal and regenerate.  I would continue to have many appointments with my UTSW care team as they made sure that my body would not reject my donor’s stem cells.  At this time, 2025, I am in complete remission and cancer free.  UTSW Transplant and Cellular Therapies had their first Patient Celebration last Saturday on September 27^th.  Glenn and I attended and had the great pleasure of visiting with my care team’s physician’s assistant, Jaime.  I look forward to next year’s celebration.