The First Time is Hard
There aren’t enough words to describe how incredibly sweet the doctors and nurses are who work at the oncology office. They really make an effort to know you; I talked incessantly to the poor girl, who may have even been my age, about my two boys, shared my favorite places to go in California (where I was preparing to rush off to in my mind palace), and cracked all kinds of jokes… I find I have the most humor when I’m nervous— this is a recent revelation.
My first treatment day, March 14, was also Pi day — the school girl nerd in me was oddly giddy over this. It felt like some universe signal that I would get through this, and I silently thanked all of those mathematicians bio-science engineer geniuses who have made lymphoma so very, very treatable. Not so long ago in the history of medicine, this would have been a completely different story.
We arrived at 8:30. It was going to be a long day. They had prepped me for that in the “chemo class” I took the week before. The first time is the hardest, isn’t that the truth with everything? But really, the antibody infusion your body recognizes as foreign and tries to fight the crap out of it. Therefore, it takes all day, because they can’t just let your body sit there freaking out about a drug killing cells that are trying to kill you. But, your body made these cells, even though they are “bad cells”, and so it wants to protect them too. It’s almost irrational of your body to behave this way, but it does.
They didn’t just jump right into it like I had thought. They started off with a whole slew of prep drugs, a steroid (even though I had already taken Prednisone at home), an anti-nausea med and Benadryl. Then they hit me up with the big stuff. The antibody infusion they start at a slow drip, trying to ease your body into it. At first, it was easy peasy, but as soon as they increased the drip my throat and eyes started itching and my face got all blotchy. They had to stop, inject me with another steroid, flush me with some saline. wait… and wait… and wait for my body to calm down. Restart at the slow rate again. They kept me at that rate for a long time. It felt like forever, but they gradually increased it. At first, my body reacted again with a low-grade fever, but that subsided as my body began to recognize and adapt to the antibodies. They were able to speed it up quite a bit by the time it was done. Next week, when I go back for my second antibody infusion, my body should recognize it, I know you… we’re old friends now, it should say… and things should move much faster. By 3:30 we started on the first of the two “real” chemo drugs, the C in CVP. This only took 45 minutes, and then the V which only took 15. I didn’t really feel any side effects from these until I went to stand, and I realized I was decently light headed. My blood pressure was under 100, so they had me sit and wait for awhile until it went back up.
When I left, I was so drained, pale, dizzy, tired. So very tired. My mom watched my two boys (3.5 and 18 months) all day for us; I feel so blessed to have such a wonderful support system and family that my kids know and love. They had a blast with her! She bought this indoor roller coaster toy that they played with literally all day long laughing and learning to take turns, eating fun snacks, having an amazing dinner. When I walked in the door to greet them all, my youngest cried — realization hitting him that I had been gone all day. And he missed me. That’s the hardest part about this so far. I still have to go home and be a mom to two very active toddler boys, and I want to be. I left a decade long career that I loved to be a mom. I love my boys with every ounce of my being; it breaks my heart a little every day not being able to be there for them the way I want to be.
It’s been six days since I first started writing this post… the last five days have been on and off brutal, mostly I think from the prednisone I’m on and then abruptly stop. My heart has been palpating in my chest and I feel like I’m going to have an anxiety attack pretty much all day. I’m also extremely weak and tired, but when I lay down my heart is pounding and I can’t sleep. The hardest thing so far though is still being “mom”. My parents and husband have been amazing these past several days, and the boys are a super sweet diversion from thinking about being sick. They are acting out a bit more though, because they sense something’s amiss or they’re worried and don’t know how to express those feelings. Our oldest was in our bed last night and this morning was sneezing a bunch; I wore my mask all day today, but of course, now I’m worried about whether or not he has a cold… and if I’ll catch it. Staying healthy though treatment is so important… and then I wonder, how am I going to manage if he’s sick and I can’t be near him?
I‘m trying to be positive… but after being on my face for six days, feeling a smidge better today, and a possibly sick kiddo… makes this whole thing ahead so much more daunting! I go in for another antibody infusion tomorrow, and I’m exhausted just thinking about it. I try to remind myself that it’s just one season! By summer, I will be recovering from my last treatment… I’m trying to pretend that each treatment is my last in the hopes it will help get me through. My mom made me one of those pull-tag countdowns, so I’ll get to rip another one off tomorrow… even though it’s only a partial treatment.
My doctor told me the first time can be the hardest… I’m hoping she’s right!
