Confessions from the infusion chair
Last week a friend called me to check in and towards the end of the conversation I broke down in tears. I was sitting in my driveway having just come back from my tenth weekly blood draw in preparation for my next chemotherapy treatment. The tears came rolling down without warning and I kept repeating, “I am so tired. I am so tired.”
I am a person who hates needles and yet, I have been poked or prodded almost weekly for over four months. Sometimes it’s just a blood draw. Other times have been a biopsy, the implantation of a SAVI Scout for my tumor so they could find the tumor during surgery, surgery, or weekly infusions through my port. Every time I have had a procedure, I think, I cannot go through with this and yet, I do. The anticipation for each procedure is emotionally taxing.
So every week, I get poked or prodded and I hate it. Most of the appointments I have had to endure alone because of the pandemic. The medical facility has tightened restrictions of who can come in and for most appointments, my husband drops me off at the front doors and picks me up afterwards. When I get home I immediately shower and change my clothes before the kids can hug me. Do you know what’s like to say, “Don’t touch me!” as your 5 year old comes barreling down the hall to kiss you when you walk in? I do make sure to give and get tons of hugs and kisses after the shower because my kids need just as much reassurance as I do that we’re okay. Thank you pandemic.
For those appointments when my husband would have had to wait for me in the waiting room during pre-pandemic appointments, one of the nurses or technicians has held my hand when the tears started to roll, squeezing it gently in reassurance while I waited for the next painful poke.
The first time was for the biopsy. I wasn’t prepared for the biopsy because it was scheduled directly after my mammogram and ultrasound were determined inconclusive. Thinking I was only going in for a mammogram, I told my husband to go on to work. By the time I went in for the biopsy, just a couple of hours after having a mammogram, I was too emotionally numb to think clearly. When the doctor came in she spoke cheerfully and pleasantly, answering my questions and walking me through every step of the process and warning when it would be burn because of the lidocain. I was too shocked to be scared. The doctor’s empathy and care during that time was instrumental as I tried to grasp the idea that this thing in my breast might be cancer. I spent the next four days looking up breast cancer and biopsies on the internet.
The second time was for the SAVI scout appointment. This is when the doctor inserted a small chip into my tumor that could be located by radar during surgery. As the nurse and I sat in the small procedure room waiting for the doctor to come in, the nurse told me she was a breast cancer survivor and had all of her procedures and treatment at the same facility. She knew what I was going through and knew the people who would be treating me. I sat there crying and telling her I was scared and she just held my hand and let me cry. I told her I was tired, sore, and overwhelmed from the different procedures. She continued to reassure me, holding my hand and giving me tissues for my tears. I wasn’t brave.
When the doctor came in, I recognized him as the one who had looked over my initial mammogram and breast ultrasound slides and asked for the biopsy. He remembered me, told me he was sorry to see me again under these circumstances, and was gentle as he described this new procedure. As tired and overwhelmed as I was, I was grateful for a familiar face and for someone to see me as more than just one more patient during his full day. It helps a lot when the medical professionals overseeing your care take the time to call you by name, hold your hand, let you cry, and answer your questions with compassion, and care. I was grateful for the chance to thank him for not delaying and for ordering the biopsy the same day he met me.
The next time, was the day of my lumpectomy. I was injected with a radioactive dye so that the surgeon could find my lymph nodes. I think. I don’t know anymore. It’s all a blur. But I remember that the technician was frazzled because we had not done a pregnancy test (protocol for all of my appointments) and having to do one would make me late for the surgery. But as we talked, chatted, and waited for results we shared stories and she gave me a huge hug before I went down for surgery.
A month later I went in for my mediport appointment. This was the three days after our state had shut down for the pandemic. My first fear was that medical facility wouldn’t go through with the procedure and I was grateful that they didn’t put off the appointment. At the time, I didn’t know that three months later, my county would still be in a quasi-lockdown. Getting the procedure at the time was a blessing because as it’s now three months later, I have only one more chemotherapy appointment left. But my treatment is still far from over.
But as they prepared me for the mediport procedure, I knew that they would put me in a twilight sedation. I would be numbed in the area where they would insert the mediport and I would be awake. As they strapped my left arm down so that I wouldn’t flinch during the procedure and as they draped blue sheet over my entire body giving me a small window to peek out of, I started to cry. See a theme here? Unable to move my position and having no one able to see my face, I felt so alone. As the nurse brushed my hand I reached out and held on tight to the nurse’s hand for reassurance. Sensing my apprehension she held it back until it was time to finish prepping. She provided the anchor that I needed. Six weeks into my life with cancer I was being cut into, again, while the added stress of the pandemic loomed over my head.
I have not shared my cancer journey on my personal social media pages because at first I was just trying to process all of the information and what was actually happening to me and my body. I didn’t want the sad eyes or the looky loos. Sad eyes are the worst. I’m still trying to reconcile sharing my story so that I can get the support I need, hopefully help others who are going through cancer, especially during a pandemic, while still avoiding the morbidly curious. My friend told me you find out who your friends are real quick when you have cancer. Fortunately, I have a pretty solid bunch and they have reached out and have supported us in numerous ways. But that’s not to say people haven’t stopped me, asked me what was going on, satisfied their curiosity, and continued on their way without looking back.
For all the procedures prior to chemotherapy, I wasn’t sick so much as I was I was scared, overwhelmed, and exhausted. I felt like such a fraud because I didn’t look sick or feel sick, but emotional exhaustion really does play havoc with your mind and body. Before the cancer haircut, no one could tell I had cancer. Now with my hair covering, it’s like a marquee saying, “Cancer patient here! Here I am! Can you see me? I have cancer!”
I don’t feel brave. I feel tired. I have been taking each day as it passes. Most weeks it’s just two appointments, some weeks it’s as been as many as three. This week I had four. I’m not a warrior, I’m just following orders: blood draw on Monday, chemo on Wednesday. Answer the pandemic questions in front of the medical facility, answer them again at the front desk, answer them one more time with the physicians assistant as she takes my blood pressure, oxygen levels, and temperature, and lastly, repeat the same answers for my oncology nurse before she takes me to my infusion chair. And that’s just for the weekly appointments. Other appointments crop up as needed.
Cutting my hair wasn’t brave. It was necessary. I was tired of my hair falling into my tea, onto my plate, in the in the shower, on the pandemic puzzles we’ve been putting together to pass the time, and finding it all over the floor. My scalp was so tender and did you know that scalp acne is a thing? I didn’t, until I had it. Gross. Thank you, chemo.
My doctor tells me I’m doing well. I don’t feel like it. Now I feel sick. My body hurts and I’m tired. There are days I have trouble getting out of bed. There are days my legs, arms, and face are swollen and you can see indentations on my skin from my sheets or the blankets I use to huddle under while I’m on the couch. My legs ache, my port placement hurts randomly throughout the day, and I have trouble remembering things. Chemo brain is a thing. It’s as if my body is completely revolting against anything that once resembled normalcy. But nothing during a pandemic is normal. Having a cancer during a pandemic is likes surrealism on steroids.
So I feel weird when people tell me I’ve got this and that I’m doing a good job. I feel like a fraud. I’m not doing anything other than checking off the boxes for each step. Do I have any other choice? I guess I do, but it’s not a good alternative.
Before you call me a warrior, know that I don’t feel like one. Know that I’m just putting one foot in front of the other. This journey is taking its toll on me and I don’t want to tell you. I don’t want to burden you with my aches, pains, and my weekly breakdowns after the kids go to bed. I feel like D.J. Fuller from Fuller house when she says that she needs to schedule a cry in her room when she gets overwhelmed. But I’m not as organized as she is. I just hold it together, most days, until the kids are asleep. And there are days that I can’t.
Know that when you text me, sometimes I will wait hours or days to respond so that I’m in a better frame of mind so that you don’t know that I had a crying jag in the middle of the kitchen because I.am.so.tired. And I’m ashamed to tell you, because you think I’m strong and doing well, when in fact, I’m falling apart.
I’m not a warrior. I’m just weary.