June 1st 2018 the day that will change my life forever

I'm sitting in the oncology doctors office waiting to receive the test results from the blood work and bone marrow biopsy, that I had done the day prior. I had been referred to see an oncologist by my primary doctor after my health showed no improvement with his treatment regimen and my blood work had came back showing my white blood count was over 40k range, normal is 5k to 10k. 

The referral was due to me having severe pain in my legs while training for my 5th half marathon, and what appeared to be an ongoing sinus infection. My doctor thought that my symptoms with my legs was just me over doing my training while having a cold or sinus infection. So he put me on an antibiotic, and asked me to put my running on hold temporarily. I started the antibiotic and rested as much as I was able while working a full time job and caring for 5 of my grandchildren.

After finishing off the antibiotics I wasn't feeling any better. So I made another appointment to see my doctor. He said that he thought it would be a good idea to do some blood work, just to see if there was something he was missing. He also started me on a stronger antibiotic to see if I had any improvement while we were waiting for my blood work to come back.

I received a call from my primary doctors office, wanting to schedule me an appointment to go over my test results. I instantly felt concerned! Any other tests that I had in the past the results were given to me over the phone. So I knew something was wrong, because I asked if something was found, and the scheduler said that the doctor would like to go over the results with me in person.

Later that day while I was driving my phone started to ring and I saw it was my primary doctor's office calling again. So I answered the phone and was surprised to hear my doctor's voice on the other end of the call. He asked if I had time to talk, I let him know that I was driving and I would pull over. My doctor began telling me that he was very concerned and didn't want to wait for me to come in person for the appointment that his office had scheduled for me. He let me know that my white count was extremely high and that he was very concerned. He told me that he reached out to an oncologist and scheduled me an appointment there. He felt is was urgent that I be seen by an oncologist instead of me seeing him right now. I asked him with my white count being so high does this mean I could have cancer, and he said that was his concern. He wanted me to reach out to him after my appointment with the oncologist.  

On May 31st, 2018 I walked into the oncologist office by myself. I didn't know what to expect, and felt an overwhelming sense of fear come over me. There were many patients there with no hair, and I felt as if I wanted to cry. But I held it in and checked in at the front desk. Shortly there after I was being called to go back. They took my weight, drew more blood, and took me to a room to wait on the doctor. A short time later the doctor came in and said that my white count had climbed even higher, and that he wanted to get a bone marrow biopsy from me. I assumed he would schedule that for another day, but he wanted to perform that procedure right there in his office that day. I told him I drove myself here, will I need to be put under anesthesia? He said they would just numb the area and I would still be able to drive home. 

I was moved from the initial room that I was in at the oncologist to a room that looked more like a surgical room. The nurse came in along with the oncologist and began to explain how the procedure would work. They would have me lay on my left side, the oncologist would numb my right hip in the area with which they would be taking the bone marrow biopsy from. After they allowed time for the area to become numb the oncologist would begin. Let me tell you that I was NOT prepared for what was about to happen. The nurse stood in front of me and said I could hold her hand, I could yell, cry, or whatever I needed to do during the procedure. Although I know that she had good intentions, I felt my heart begin to pound extremely hard in my chest as if I may have a panic attack! The oncologist told me that he was going to begin, and that I would feel pressure in my right hip as he began the procedure. I closed my eyes and started to pray, which I continued to do throughout the entire procedure. What I felt was the pressure from a metal device being hammered into my hip, for what seemed like forever! As I felt that I couldn't handle much more pain I had asked the doctor if he was almost finished. He told me that my bones were stronger than he expected and said that he thought it was from all the running I had done, that running makes your bones stronger. After what felt like hours, but was only minutes, the doctor was able to reach and withdraw the bone marrow that he needed. I was scheduled for a follow up appointment for the next day.

My husband took off work to go with me to my appointment for the results. I felt it ironic that it was my 49th birthday and instead of spending it doing something fun with my family, I was sitting in an oncologist office waiting to hear my fate! 

The oncologist came into the room and began to tell me and my husband what the bone marrow biopsy had shown. He was talking but I couldn't make out what he was saying. I felt as if my ears were no longer functioning properly, because I could see the doctor's mouth moving but I couldn't make out what was being said. A few minutes later I heard my husband ask if it was curable. When I heard those words I snapped out of the fog I was in, and I asked was what curable? My husband and doctor both looked at me confused. I told them that I missed what was said. The doctor told me that I had leukemia, that he initially thought it was acute myeloid leukemia, and that he had already reserved a bed for me at the hospital. But the results showed that I had chronic myeloid leukemia. Which meant that I wouldn't need to be immediately admitted into the hospital. Because acute myeloid leukemia is fast progressing, and currently the only treatment for it was a stem cell transplant. Since I was in the chronic stage I would need to take a chemo pill once a day for the rest of my life, that I would die with leukemia but not from it. WOW! As I type this it really hits me how misleading this comment from the oncologist was..."I would die with leukemia, not from it!" Such a nonchalant response from the oncologist that initially diagnosed me!
 

Once in the vehicle I had nothing to say. My husband was driving and I was leaning my head against the side window, staring out it and looking at the lines on the road. I kept running what I was just told through my mind over and over. At that time I had just stopped taking care of my 5 grandchildren, they were back with their dad. But the financial burden of helping care for my grandchildren, in addition to helping a couple of my sons with financial issues had caused us to go bankrupt. Me and my husband lost everything and were living in a tent. As we drove to our new home (tent) I felt as if I was standing in a long hallway with the door far from my reach. Feeling that behind that door was where my happiness, peace, and good health was. But no matter how hard I ran, how hard I tried to reach it, it was always just out of my reach! 

I'm living in a tent and I have leukemia, I have leukemia and I'm living in a tent......