I instantly recognize the shade of yellow on the bag. Seeing the warning symbol, my instincts take over. I do a 180. The hall is a dead end. If I could keep going, it would not matter. My cancer is coming with me. I have no choice between flight or fight. I have one option. Fight.
I gather myself with an amusing thought – “this reminds me of a Forever 21 bag”. I shake my head. What is in this bag will never be in style. This bag contains my cancer treatment. Healthy will always be fashionable. Chemotherapy never will.
I have already had weeks of treatments, days of preparation, hours of counseling. I stand here holding a bag with my first full doses of treatment. Day one. One full year to go.
Hasn’t it already been a lifetime?
I count on my fingers — It has been four weeks at the Hollings Cancer Center at the Medical University of South Carolina. More than 30 hours driving, over 15 hours lost to waiting rooms, and then the actual oncologist appointments. This only accounts for one cancer specialist. I have two.
Fighting cancer has become my full-time job.
My first six appointments at MUSC revolved around my “starter pack”. Two weeks of testing and consultations, then four cute little kits, one for each week of “titration”. Bright-colored boxes with pull tabs. The tabs are just the right size for a hot apple pie from a specific fast-food establishment. These innocent-looking boxes help me adjust to increasing doses of Ventoclax while allowing my medical team to monitor for tumor lysis syndrome. Just when the bruises from one treatment and lab tests start to heal, more blood is needed to make certain it is safe to continue.
All for a drug that can only treat my cancer. It can never be cured.
Tumor lysis syndrome is only one of the side effects I now have to remember effect my day. Loss of taste, nausea, restlessness, sleepiness, sweats, chills, constipation, and diarrhea. Add a highly weakened immune system in the time of Covid to all the other viruses and bacteria lurking in the dark corners of our world. I don’t need to justify why I wanted to slap a friend for sneezing on me.
When thoughts about life and death are consuming you, time becomes meaningless. Until you are holding a yellow bag.
I take 400mg of Ventoclax every morning. At the end of my treatment I will have consumed 144,000mg. That is 66 pounds of a chemotherapy drug designed to alter my bone marrow production. This drug slows the growth of cancer cells. It does not stop the production of cancer cells. Nothing can. My body will always make cancerous white blood cells. This drug simply slows down my immune system’s self-destruction.
For a time.
I have read the pages and pages of information in the yellow bag. Twice. No grapefruit. No marmalade. No cute pill boxes, they are not “chemo” proof. My husband has to wear gloves if he touches my pills. Hugging and kissing are okay. As instructed, I “talk to your doc about other displays of affection”. I’m not sure I should have been as embarrassed as I was. The color in my husband’s cheeks made me feel better in that moment.
I swallow four, pale yellow pills at seven every morning. They taste like chlorine. The taste turns into a smell in my throat as I swallow. A smell that reminds me of the terror of not being able to touch the bottom of the pool while taking swimming lessons when I was 8 years old. The smell is in my skin. It is in my clothes. It is in my every moment. And I am not supposed to be afraid.
Ventoclax has altered my perception of food. Nothing pairs with swimming pool cleaner. Except maybe Brussels sprouts. Foods do not taste right. I have to eat healthy. All I want to eat are things that taste right. I have cancer and all I want is chocolate to taste right!
Nausea and I play a daily game with the clock and the color of my skin. I wait 1 hour and 37 minutes. My skin serves as the mood ring to determine how bad it will be. Green: nausea will pass quickly. Pale yellow: the day is over. Each day is a toss-up as to how the meds will affect me. My nausea medication has 9 refills.
On really bad days, I can feel the fight going on in my bones.
It is easy to talk about the negative things. Our world conditions us to be relevant by comparing our miseries. The moment I announced my diagnosis my family was flooded with compassion by our friends and acquaintances … and strangers. That flood helped us survive our darkest moments. Now I can see many happy, surprising things.
Unlike so many that I see, my treatment plan is portable. With many precautions, my life has some normalcy. Taking a vacation or visiting family is back on the table as long my white blood count is an “acceptable” low. Large groups are a factor. My desire to go on more cruises is on hold. Driving to our chosen destination is the safest option. Coordinating lab tests, chemotherapy infusions, Ventoclax refills, and oncology appointments will be no different than planning around the weather.
After the initial shock, I have figured out living with this cancer. Food may taste wrong, but I am starting to feel like me again. I want to do things that are fun and adventuresome. I am making plans with my husband and his sailboat. Cancer can come along and be the third wheel.
I’m stuck with this third wheel and its pills for a year. Each morning for the next 300 or so days, I will chase the bitterness of Ventoclax and cancer down with gratitude and acceptance. That is what I tell myself. Which is silly. I know I am lying.
My life now contains a fellowship that has a real fight for their very lives. Some have no family for comfort. No friends for help. No access to wholesome food that I complain about having to eat. Some are missing arms, legs, or other body parts. Some know their futures are limited to weeks or months at the most. Their quiet dignity and barely perceptible smiles are their common screams of defiance, “I AM NOT DEAD!” When I briefly meet their eyes I feel my guilt in my throat. I will not lose my hair. I will never undergo cancer surgery for CLL. CLL will never kill me.
Living with cancer is more than being “sick”. You become exposed.
It is more than people looking at your body. It is the inability to hide the inner attitudes and selfishness that you have tried to cover with pretended sophistication. It is realizing that you have to manage more than just a cancer in your body, you need to look for one in your soul as well.
As of this writing, it has been 6 months since my diagnosis, 4 months since the start of my infusions of Obinutuzumab, and 2 months since I started Ventoclax.
Here are some support and information links if you would like to know more about ….
- For more information about various chemotherapy medication visit http://chemocare.com
- For more information about Chronic Lymphocytic Lymphoma visit https://www.leukaemiacancersociety.org
For other post about my cancer journey please click on the tags in the post headers.