Weight. Heavy with what felt to be trillions of pounds of water pushing down on every inch of my body. My face being the only access to the air I was in desperate need of. Each fleck of skin tender to the touch. A mere graze of my cats tail as she nestled near me and I was crying in silent screams of pain. When I was given a break from the medicine causing these conflictions, I was being rushed back to the Anchorage Providence Cancer Center for blood infusions. Being chemo induced anemic just added to the growing list above.
I was diagnosed with Diffuse Large B Cell Non-Hodgkin's Lymphoma. Just the diagnoses is a mouth full, right? The pun has never been lost on me as the medicine regimen I was put on lived up to the "mouth full" that the diagnoses was.
Deciding my treatment, as I understood it, was a battle between my age and the "age" of the cancer within me. My age was 20. The type of cancer I had was most commonly found in people ranging between 80-90 years old. Furthermore, my monstrosity of a tumor had encased my right ovary and fallopian tube, attached itself to my rectum, and was climbing fast toward my kidney. To add, my BCL2 and MYC genes were replicating individually at rates of 80%-90%.
Now, putting this all together and asking the doctor to dumb it down for me, meant the following: If the cancer would not have been discovered during my surgery earlier in the month, I would have gone from curable to dead in one month.
I was a dead woman walking.
Are you seeing the puns here? I certainly grasped a hold of the myself so as not to lose my shit.
Let me set the table so as to provide you with the full feast that was my chemotherapy regimen.
I was informed I was to have six cycles of a 24/5 infusion known as R-EPOCH chemotherapy with the first four cycles to include intrathecal Methotrexate. This seemed pretty straight forward. Until it was broken down in a schedule with my every week mapped out. It is best to keep in mind the physical pills that had to be administered to me daily and on a strict schedule intermixed with the mapped out chemotherapy schedule below.
Week 1
Monday-Visit my wonderful nurse friends at Anchorage Providence Cancer Center for my in office dose of chemo meds through my port embedded under my skin on the left side of my chest. Easy access to my system without damaging my young veins. After a few hours, a nurse would come over to the center from a different infusion center to hook me up to my bag of chemo that would become my unwanted companion for the next week. Moving through a series of elevators and hallways, I would head to the parking lot, my destination waiting for me in the Anchorage Hospital. Upon arrival, bag of chemo still plugged into my chest, I would lay on my stomach while a spinal tap was performed to remove spinal fluid and replace it with Methotrexate. I called this my "insurance policy" as the goal was to ensure no amount of cancer remained in my body nor would it be allowed to take over my brain. I was then sent, precariously, home.
Tuesday-remain in bed at all costs so as not to get a spinal headache. Pee only when absolutely necessary, which was all the damn time thanks to the unwanted companion loudly pumping disgusting fluids in me.
Wednesday- the same nurse who hooked me up to my bag in the cancer center would drive out to my house for a lunch of Kraft Mac N Cheese and a new bag of chemo for me as my bag would have been emptied within me at this point. This nurse, I will refrain from adding her name out of respect for her privacy, is a sister to me now. She will never know all that she did for me during this time and even after as we remain so close. She is one of my reasons for being grateful for this cancer adventure. Thank you my sister.
Thursday-rest. Whatever that looked like.
Friday-back to the cancer center to be disconnected from the leech of a bag that had been attached to me. Only to be hooked up to an IV full of other chemo in the office.
Week 2
This was known as the week of pain, misery, and quiet conversation. Each night I had to be given, or give myself, a shot of Neupogen. This I referred to as my "miracle grow" as it was to assist in the regrowth my white blood cells. Just imagine pins and needles as fine as thread weaving throughout each tissue of your body. The closing of your vocal cords as you stammer to speak because the pain in your neck is too severe. I am not fluent in sign language. This experience led me to learn it's importance and gave me a voice when I did not have one. I would only be able to fall asleep by signing the alphabet forwards and then backwards over and over again.
Week 3
Anndi is Free!
NOT.
Simply stated, I was chemo induced anemic. The first two cycles of chemotherapy my third week was one of no scheduled infusions. However, it became apparent that my body needed a refresh thanks to all it had been put under the previous weeks. Thus it was during this week my health care team and mother decided to schedule a blood infusion. I had 8 blood transfusions within my six cycles of chemo. Each infusion requiring two bags of blood for my body to soak up.
Then, Week 1 would begin again. This time, the amount of chemo filled into the bag I would be plugged into for the week would increase. Painting the picture even brighter for you, I began with a fanny pack size bag and ended with a college size backpack. For six months, non-stop, this was my life.
If you are asking yourself how I worked, I didn't. I couldn't.
If you are asking yourself how I spent my free time, I would ask "what is free time?"
If you are asking how I did this alone, I am fortunate that I wasn't.
My mother was my guide, my drug dealer, my sarcasm, my laughter, and my breath through it all. She moved to Alaska to be there for me every step of the way. When I couldn't speak, she was my voice. When I couldn't think, she was my brain. I have no words that could begin to describe my unwavering gratitude and respect for this woman. I love you mom.
After all of this, I look back and here is what I see:
I was 20. A dead woman walking with a mouth full for a diagnoses and chemotherapy treatment.
And I survived.
With hope,
Anndi
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