Susan Knittel

First post: Feb 18, 2018 Latest post: Aug 29, 2018
Welcome and thanks for checking in! If you know Sue you know that she has more energy than most of us do on our best days. We are creating this page so we can try and keep everyone updated on Sue’s journey as she kicks this cancers butt. A lot of people have been asking “how did she know?” “did she have symptoms?” Well….here’s where it all started.

The beginning: After months of blood tests and decreasing white blood cell numbers, the number fell to uncomfortable levels. 

A bone marrow biopsy was the next test to help determine whether cancer or another disease was affecting blood cells or marrow. Some changes to blood cells can be detected in marrow samples before they can be seen in blood samples.

The purpose of the tests is to:

- Confirm a blood cancer diagnosis or a bone marrow disorder
- Detect abnormal chromosomes to determine your risk and to plan treatment
- Evaluate your response to therapy
The doctor uses a hollow needle to remove a small amount of marrow cells (aspiration) and a small piece of bone filled with marrow (biopsy). The samples are then examined under a microscope to detect any chromosome changes (cytogenetic analysis) and other changes in the cells. 

We found ourselves waiting for 2 weeks while the marrow was processed and examined. Uncertainty is the most stressful feeling. 

The diagnosis: 

MDS: typically referred to as the bone marrow disorder. Each person's prognosis is unique, hence why a prognosis can often be difficult to make. In addition, the progression of the disease is unpredictable for many reasons. There are also different subtypes of MDS. The subtype that a person has will affect the doctor's prognosis and therefore the course of treatment. The only cure would be a bone marrow transplant. 

After meeting with another doctor and getting a 2nd and then 3rd opinion doctors needed more of a sample of the bone marrow biopsy. Not enough was taken at the first biopsy so another had to be performed. The biopsy revealed that the MDS had progressed and the levels of “blasts” went from a 4-6% to 28%. Anything above 20% is typically treated with chemotherapy. 

The journey: 

“One step at a time, one foot in front of another.

 I am going to get through this one way or another”

October: MDS diagnosis. 

January: AML diagnosis. 

The MDS had progressed and was determined to be AML. The dreaded “C” word. Cancer. More specifically, Acute Myeloid Leukemia. 

What it is: 

- a cancer of the bone marrow and the blood
- Progresses rapidly without treatment
- Affects mostly cells that aren't fully developed- these cells can't carry out their normal functions
- Can be a difficult disease to treat. 
Course of treatment: 

Step One: A mediport is inserted in chest during a short outpatient surgery. A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. A mediport helps provide the chemo during therapy and transplant. DONE February 9th, 2018.

Step Two: WAIT again for insurance to accept chemotherapy as treatment. 

Step Three: Chemo begins February 16, 2018.  The chemo drug is outpatient every other day for 7 days than admitted to the hospital for 2-3 weeks for monitoring. After this, a two-week break is granted which will allow her to go home and rest. If she is in remission, (cancer is gone out of marrow) she will go right in for the transplant where she will receive induction chemotherapy and then receive the transplant. She will be in the hospital for another 3-4 week stay. 

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, I lived through this horror. I can take the next thing that comes along. You must do the thing you think you cannot do.”

– Eleanor Roosevelt

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