The phrase “Once chemo is done” is being used a lot in my home these days. For the last five months of my life, and hence the life of my family has been revolving around the chemotherapy. All plans, invitations, outings, birthdays, celebrations took the back seat and the chemo schedule dominated the calendar. It was the only point of reference in our lives. We have existed as a “cancer family” – y way of describing a family when one family member has the disease but all members suffer equally). I couldn’t commit to anything knowing very well that a significant unpredictability ruled my schedule. (I have continued to work one day a week on Thursday, my best day of the week , the only day I predictably feel well). Even those who wanted to come and visit have been subject to “I don’t know how well I will feel that day, why don’t you check the day of and we can decide.” As if they are also living day to day.
Halloween came two days after chemo, thanksgiving a day before, Christmas a day before, some other holidays the day of…….chemo has been the ultimate truth of our lives and household. The much anticipated end of chemotherapy comes in about 4 weeks.
One of my friends had said to me in a text “There is nothing routine about the chemo routine.” But somehow my entire family has settled in the chemo routine to the point that my son thought (until last week) that we (my husband and I) went on a date every Friday morning. Of course he doesn’t need to know that we do end up having a lunch date every Friday after chemo. Friday evenings are quiet and Disney movies baby sit kids and bedtime is early. Weekends revolve mostly around keeping up with the household so it continues to look like its inhabited by humans. My husband running around like a chicken with his head cut off. By Sunday evening though, the house does look like a bomb has exploded here which is filled with toys, paper, sofa cushions and stuff. I would still be in the same spot on the couch as I was when I came home from chemo – except for sleeping in the bed at night.
Children have gotten used to the idea of mommy taking naps. Our 3 yr old saw her dad nap once in the last few weeks and said, “Daddy is sick, he needs medicine”. Medicine and treatment is something she seems quite familiar with now. I caught our 7 yr old humming “Tis the season to end chemo la la la la la la…”
It has been the ultimate reference in our lives. Now, we are moving close to the end. The routine will be new, the definition of time will be new as well. The value of time would be new too.
I will be person and a half after chemo, having grown horizontally and emotionally. I was pretty trim at the time of the diagnosis to the point that I let myself be weighed in doctor’s offices with shoes on. Then came the surgery and I got skinnier.That was about 22 pounds ago! Chemotherapy started and so did the steroids. Every time I checked in, the weight was a pound and pound and half up. 12 treatments and voila! My oncologist insists that it’s water retention. I am willing to buy her story, except these cheeks aren’t filled with water! I am so glad I have held on to some of my maternity clothes. I had heard that chemotherapy isn’t easy, but I still didn’t know how hard it truly is. The persistent unwell feeling crushes the spirit to the point of loosing hope. But some how I managed, we managed.
So, It is truly hard to imagine what it would be like….The only thing I know for sure is that I am going to cry. When ever I think of the last time that they will stick the needle in the port, the last time I would have to smell that particular note of rubbing alcohol at the cancer center, last time the fake smile I put on as the needle enters my chest with bothersome pressure, last time I would have to get in the chemo bed/chair, last time I would be attached to an infusion pump for a few hours, last time I would be aroused from the Ativan and Benadryl stupor to confirm my name and DOB, last time I will come home not feeling well…….my chest and my eyes fill up. It will soon be over!
Ending chemotherapy will be an intense emotional experience that perhaps only another chemo recipient can relate to. The “personal hell” that it puts you through is an experience that only you truly understand, the aching in the middle of the night that is only yours. What it feels like to be woken up with retching, proceeding to vomit and then go back to sleep only to be woken up again to repeat the same isn’t something that can be explained to another. What it means to have leg cramps even though you are lying in a bed under warm blankets is hard to articulate. How the lack of energy impacts you when your toddler wants you to go from one room to another but you cant…only your heart can feel. What it means to be still while your life is passing by for 5 long months….
Time has come to be defined in my life as before cancer, after cancer, after surgery, before chemo, after chemo, before radiation, after radiation. It is hard to relate to concept of “some day” any more or ” in the future “or “one day”. It has become more about here and now. Its about making plans that are solid and near. There isn’t room for vague anymore. I have been handed the warning, a check engine light…….its no more driving mindlessly thinking may be I will take the next exit or stop at the nearest rest spot. This road requires clarity and faith. Clarity of where this is going and faith that I will get there. It really doesn’t matter who is driving in the next lane or what car they are driving. Its about being aware of the moment and value it and not loosing its sight for some other moment that may never really happen. Cheers to the here and now!!