It has now been 12 weeks since chemotherapy began. I have recovered from Dose 3. But, have become intensely distrustful of my own capacity to tolerate the after-effects. The avuncular gentleman from the hospital comes home for my usual pre-dose blood test. The counts are not all that good.
Hb- 9.7 L
RED BLOOD CELL COUNT 3.38 L
PCV (PACKED CELL VOLUME) /HEMATOCRIT 28.8 L
Neutrophils 76.9 H
Lymphocytes 16.4 L
So my doctor does a ‘Dose reduction’ this time and warns me that I need to be very careful of infections. I should not step out into crowded places or eat out. I come home and brace myself for ‘Mayday’.
I drink lots of coconut water to flush out the toxins. Post-chemotherapy, a heavy, repugnant odour lingers in my room, my bathroom. We use lemon grass oil to swab the place. Light scented candles. Put drops of eucalyptus oil on my pillow.
I realize I am dealing with a chemo brain : mild cognitive impairment (MCI) because of chemo. I have memory loss, difficulty thinking of the right word for a particular object, difficulty following the flow of a conversation and trouble concentrating or focusing on one thing.
I ask my daughter to pass me face cleansing milk but cannot put a term/name to it. I describe the bottle, the colour of the cap and make wild hand gestures around my face. She watches me with bewilderment and I scrub the air around my face and repeat,
‘that thing, that thing…’
Nausea kicks in.
I need to take the SOS medicine for it. I have trouble recalling the name. I sit on my bed staring at the medicine box. The only name that keeps coming to my head is ‘Brendon McCullam’. *
The first three days after the dose have passed. I have coped well. Maybe managed by the medicines and the booster injection. For the first time, I decide to take Alprax that had been prescribed by the doctor to give me sleep. It does work, but ends up giving me a headache. I discontinue after three days.
A week from the dose, I start feeling sick. Extreme nausea and weakness. Mouth ulcers. I apply gel on the ulcers. The oesophaghal tract feels like sandpaper. I throw up bile-like stuff a few times.
Burps are also painful –like a fistful of gravelly sand is being forced upwards through the tract.
Self-esteem. I notice I am losing it, bit by bit. I never had very high self-esteem, being a second born girl when the family could have done with a boy. I grew up feeling guilty of my gender. I don’t think I have ever recovered from deep-seated low self-esteem. This illness and the stress it is creating on the household is causing more of it.
My husband has been by my side, doing every possible thing he can to make my journey better. I am grateful. People tell me again and again how nice he is. I agree. But, the more I am reminded about it, the bigger hit my dwindling self-esteem takes. Makes me feel like I am a huge liability.
I feel lonely. There are two parallel roles people around a patient need to take on – providing and caring. Providing means getting the medicines, the food, the juices, driving the patient for chemo rounds , ensuring the TV works and so on.
Caring means talking, listening, holding, just spending time. Sometimes the caring bit is left out. Sometimes, I just want a long, long hug.
The tough week passes.
My mother reads a humour piece of mine that Deccan Herald has carried this weekend. Her reaction is,
‘Why do you choose write like this when there is so much pain inside?’
I don’t know. I don’t feel like writing morbid stuff. There is enough pain and suffering in the world. If I have a gift for making people laugh, I’d rather do that.
My mouth feels almost entirely like sandpaper. It’s a chore to eat. Still, manage to enjoy a potluck dinner, focussing on the fish fry my friend makes especially for me.
I take the kids to a mall. I don’t feel very strong hence keeping the trip limited – buy new head scarves for myself, a toy my son wants, some canvasses and paints for my daughter. Even this tires me out. But, I feel happy and grateful for the day.
My son is getting jumpy in the midst of his summer vacations. We have not taken any vacation this year — the children are in some sort of house arrest. I send him to the circus today with our ex-driver, now manager who loves him like his own. I remember how, as a little girl, I would really envy those pretty girls in the circus – their sequinned dresses and make-up. I wished I could be them. Older and wiser, I now feel sad for those girls. Under those layers of make-up, the glitter and arc-lights, is there any hope and happiness?
How perspectives change! I try to stay positive. But, sometimes I start slipping into hopelessness.
What is life about? What am I fighting for? Living? It all ends in death, in any case, right
*It’s Domperidone. Don’t ask me how its related to Brendon McCullam.
Next : Taxol Starts