Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
Most of us never stop to think about how much information one little sample of blood can give us and our physicians.
Since the pandemic, it has been a bit strange as I enter the hospital, have my temperature taken, and proceed to the Infusion wing of the hospital for my weekly blood draws and shots. I think how much the simple drawing of blood has changed my life, particularly in the last two years. I think every single cancer survivor has grumbled at one time or another about all the blood we get taken. I have learned how important these blood draws are, watch them carefully, and go over treatments with my doctor. My life literally is determined by these tests. Even the people in the lab know I want the results given to me. There are some very important items to remember.
I think most people don’t think of blood other than if we are hurt, and it comes pouring out. After my cancer diagnosis, however, I learned the grave importance of the innocent-sounding CBC or complete blood count. I used to have one annually, and my PCP would use it to adjust my thyroid medicine, but that was all because it was positive in every other range.
The first red flag was when I presented with anemia after a routine blood test from my PCP. After several months of being on iron and with the blood counts going in the wrong direction, he was concerned enough to refer me to a hematologist/oncologist. She took eight vials of blood and could not find anything which made me cheer. Then, she told me there was a reason for my low blood count and ordered a bone marrow biopsy. This, through the bone marrow biopsy, was how I was diagnosed with Myelodysplastic Syndrome, and many blood cancers are diagnosed this way. I have had eighteen BMB’s since then, with more to come, to see how cancer has progressed or gone into remission.
My lessons in reading and analyzing blood tests had begun.
For the past couple of years, I have gone in every single week. They first do the CBC. During the CBC or complete blood count, the white blood count is important, because these white cells are what fight off infection. Those of us with cancer know to be able to fight off infections is crucial for anyone who has a compromised immune system such as cancer. Sometimes it is cancer and other times the chemo which causes the low white blood count. I receive weekly shots of Zarxio to keep my white blood count from dropping drastically. They are never normal, but higher than they would be without the shots.
The red blood cells carry oxygen from the cells throughout our body. Hemoglobin counts are important because this is a protein that carries oxygen from the lungs. If these counts are low, we may have difficulty walking or breathing. These counts are trickier. The shots I take for this are Retacrit. Because of the danger of blood clots, insurance is very careful. They will only allow the shots if the Hemoglobin counts are below 10 and stop when they go above 12. Every week, the staff and I inspect these numbers very carefully. I have gone all the way to 12 and then had to wait until the count was below 10 before I start all over again.
Do I get tired of this? Absolutely — it is hard for me to feel like I am tethered to the simple blood counts, not knowing if I am going to need the second shot or not. Zarxio is a given. Retacrit is like a teeter-totter. One time the nurse accidentally gave me the previous printout of blood work, and we thought it was too high for the Retacrit. Neither of us realized the error in the date of the blood work. Fortunately, my sharp oncologist caught it, and I had to go back the next day to start the series all over again.
To be honest, I prefer it when I am on the Retacrit because I have more energy. Once I reach that threshold of 12, usually the hemoglobin starts back down, and I have to wait until I am really fatigued before I can take them again. I think almost every cancer patient knows about anemia and being tired all the time.
I faithfully have visited the hospital through COVID, no visitors, no valet service, the coffee shop shut down and huge changes. I have been there when the cancer center has been overwhelmed, many people trotting in and out, and normal times. I have been there when it is in between these two extremes because we are allowing some visitors now. It has been an interesting ride to be sure.
There are times as I trudge down the hallways and climb on the elevator that I am tired and weary of this. But I realize these shots are keeping me in remission and they are working. I could never get through it without the wonderful oncology nurses who are kind to me, and my great doctor, who keeps track of this for me. I am most appreciative.
However, I take responsibility myself for being familiar with these basic facts about blood counts. We are told when we are in remission, out of remission, which treatments when we need blood transfusions and chemo, when will be the next bone marrow biopsies, and if we can undergo stem cell and bone marrow transplants. All of these decisions are centered on these blood counts. It is amazing what our doctors can learn from one simple test that takes a tiny sample of our blood in under a minute. It is worthwhile to take the time to understand how important this is. Being informed is beneficial to all of us!