Ph+ Life: A five year slice

Manoj Joshi – Mumbai

September 2000

Staying alone around 2500 miles away from hometown. Comfortable job involving periodic reading and preparing lectures to make the hardcore scientific stuff, palatable for the undergraduates. Intermittent project preparations, seminars, group discussions, assessments in a weather setting which is cool with gushing mountain rivers and lush green rain forests having rich wildlife viz. macaque, chimps, langoor, musk-deer, rhinos, elephants plus migratory birds. Life was full of FUN, ACTION & ADVENTURE except for that tender great toe in right foot.

October onwards

Popping a painkiller tablet does take care of the tenderness of the toe for the day but pain comes back with a vengeance at night. Another tablet & sleep. Bright sunshine next day. Bus arrives. Off to work. Lunchtime. Can eat only 2 rotis with curd & small amount of rice and a better painkiller this time, since the pain has spread to the toe of the other side. 102° F at night. Some extra pills for the high temperature. Not hungry enough. Maybe this fever is the cause of decreased appetite. Fine, but I need to eat something along with these painkillers. Some leftover tomatoes with salt come in handy. In the next 4-5 days, other small joints of the foot & hand get redness, swelling with pain. Difficult to write. Five to six watery motions in a day and two to three at night leaves behind a weak body. And high grade fever prompts for a blood test. Slightly high white cell counts, rest all normal. Probably a bad intestinal infection. A seven day course of broad-spectrum antibiotic and I am fit and fine.

Work as usual. Loose motions reappear next week and so does loss of appetite plus weight loss, as also the PAIN, this time in both knee joints. Oh god, never experienced such pain. Stronger painkillers. Fourthgeneration antibiotics. Decided to take a break from work.

Back in Mumbai

And it is such great joy to meet the better half and my four-year-old kindergarten going son after a gap of few months. Back at home life gets romantic with family. Evening simply rushes past with playful son. Night. Nature's call. Such terrible pain in both knees while getting up from bed. It takes full ten minutes to slowly move and reach toilet from bedroom. Damn this fatigue and weakness. C'mon, I'm only 35. Early morning blood collection is arranged at home and taken for tests at private lab. And then I decide to drop my son to school myself, instead of his school bus, just to spend more time with him. Ah… can't keep pace with a 4- year-old child even with potent painkillers and get exhausted…. out of breath at school gate. Somehow back at home wondering what kind of a virulent-strain intestinal germ can cause it. By evening my baffled & crying wife tells me the report. Hb 5.0, TWBC 40,000, platelets 7. 5 lakhs. Immediate admission to a private hospital. Intravenous antibiotics, tablets capsules. More blood taken. Same report. Repeat test next day TMH, Hb 4.5, TWBC 72,000, platelets 15 lakhs.DIAGNOSIS: CML. DISASTER STRIKES. Bone marrow biopsy & aspiration taken. Results will be known 3 weeks. Three killing weeks to know if my life span is six months (Ph-) or three years (Ph+). Till such time, hydroxyurea takes the driver's seat.

Doctors at TMH do mention about a better treatment option i.e. interferon but they don't have time to go deep into ifs & buts. One has to wait till cytogenetics. Meanwhile Hb rises slowly, TWBC comes down and I'm released from hospital to home. Huge books out of shelves and spread permanently on the bed. Reading them does enlighten further but having worked earlier in haemato-oncology, I know what it takes to give care and support to 'blast crisis leukemia' patients. I wonder when Busulphan will be added onto hydroxyurea. How will I manage the toxic side effects of Busulphan?? Everyone in the family as also the inlaws are after the cause of this CML and get greatly distressed and disappointed when they come to know it's as yet unknown. Hence, along with Hydroxyurea + Zyloric, I start on wheat-grass juice, chewing Neem leaves, some kind of ash with crushed bitter-gourd and of course a non-stop tape recorder chanting 'Maha mrityunjay mantra'. A visit to a local temple priest in evening to shoo away any nasty spirit wreaking havoc within me. That makes me a FULL TIME PATIENT.

Cytogenetics give the first GOOD news. Ph+. It's curable. Now Dr. Saikia tells the option of BMT. And fortunately the only sibling's (elder brother) marrow stem cells match with mine. I dive into the Internet  and the statistics of BMT outcomes in TMH, in India, in western countries are compared. A budget of Rupees one million is given. Despite a procedure-related mortality rate of 30-40%, preparation for BMT starts furiously and the lion's share of contribution comes from my lovely wife's friends & well-wishers staying between Malabar hill and Massachusetts. Everyday eight to ten hours are spent on the Internet by me and I read the papers of excited scientists mentioning the astounding results of 'STI571' achieving major molecular responses.

By February, the money is deposited in TMH account. Month of March sees me go through routine blood tests, liver..kidney..lipid profiles. Lung function tests, ECG, X-rays, CAT scan of head (brain), chest & abdomen. Thallium scans for heart and kidneys, sonography etc. All clear. BMT is on. Donors for blood & platelets arranged. Admitted to BMT ward in isolation. Taken to operation-theatre for Hickman's catheter  insertion under general anaesthesia. Chemotherapy with fludarabine started which triggered explosive vomiting, extreme nausea. One patient in one room, thankfully with a TV and intercom phone to talk with wife, brother & family. Total body irradiation (Radiotherapy) done to kill all marrow cells (both healthy and Ph+). Brother's stem cells were infused after which more injections, capsules were added. Twice daily blood taken out for tests.

After continuing the rigorous schedule for few days, came a sweet news. My BLOOD GROUP had CHANGED from 'O' positive to 'B' positive (that of my brother). Meaning, my marrow was getting populated by my brother's marrow cells. GREATEST NEWS in months. Now I must be regular with my anti-graft rejection drug, Cyclosporin. Oh.. It's tough. Forty colourful capsules & tablets of different shapes & sizes plus many intravenous bottles thru' the thick Hickman catheter stuck in my chest draining these fluids straight into the right upper chamber of my heart. Survived the BMT procedure well. All blood counts normalized. Into CHR i.e. complete hematological remission. Continued with Cyclosporin for four months. Finally all medicines stopped and blood counts are normal. Everyone in the family is relieved.

But then with cure of CML, begins another difficult phase in life. No one is interested in having an ex-CML  patient on payroll even after convincing them that my TMH account still has Rupees four lakhs. Fine, I will live in denial. Sure enough I get a job and had no problems executing my responsibilities comfortably. Routine monthly CBCs at TMH went on. Nearly two years after diagnosis, DISASTER strikes again in the form of relapse. Blood counts are back to dizzy highs again. At this point I am referred to Viji, GIPAP. Apply online. Enrolment refused as GIPAP had clear criteria. Soon after Dr. Saikia started me on a -Interferon injections, the very first injection causing double vision, flying lights in front of eyes, splitting headache, fever, extreme malaise and body ache, multiple joint pains. Somehow I completed four days with a- Interferon and visited Dr. Saikia to tell my complaints and was redirected to Viji. Soon enough I got the letter of approval from Pat and immediately thereafter the supply of Glivec, courtesy THE MAX FOUNDATION and NOVARTIS. Can I ever thank them enough? Well, each one of my trillion stem cells is always in thanksgiving mode and will remain so each moment.

Well, two and a half years with Glivec now, I never had to take a break from work, except for a recently concluded second HONEYMOON…

Soon thereafter, here I am getting an exciting offer to establish an Indian hospital in Afghanistan. This boosts my adventurous imagination to newer heights. Project accepted. Conditions apply (Oncologist, Amma, TMF, GIPAP guidelines ). Doctor is OK with the idea if I come to see him at the specified intervals and he keeps receiving my latest CBC at desirable intervals. Amma ignites the fire in my wings by switching on to the Green Signal After prolonged consultations and deliberations, the new range of equipments are finalized & purchased.

Then in August 2005 I get driven around on the streets of Kabul. What a contrast from Mumbai!! No traffic signals. No roads either. Few scattered cars and some armoured tanks, but plenty of Kalashnikovs in sight in this high altitude valley among Hindukush mountain ranges. And Afghans are delightfully affectionate towards Indian staff. They show their villages having colourful trees of almonds, grapes, pomegranates, figs, mulberry & apricots. They take us to lakes & rivers with clear blue water reflecting the sky above and the oblong pebbles and swimming fishes. Winter converts the town into a Swiss village and Bombayites into Eskimos. At minus 18 degrees, the snowfall weaves a four feet thick fluffy cushion for the whole of the town, drapes the mountains with a dazzling silvery-white quilt and the X-mas tree branches bear numerous icicles. A 6-feet high snowman made by us is the only one who can stay out in the open. Rest of us mortals have to huddle around the Iranian heaters. The day oxy-acetylene cylinders are brought to our dwellings is a lucky one for us. Using the flames, we can melt the tough ice present in the plumbing pipes and get some water to brush our teeth and have a smooth shave that day. Thankfully, the drinking water cans are kept in warm rooms and I never face any problem to get that glass of water for taking my daily dose of Glivec.

Career opportunities also take me to the wild highland regions in east Africa. Amma, Angeli, Danielle and Erin expeditiously facilitate the transfer of physician and Glivec supply to Ethiopia. The untiring concern and care provided by the TMF team at Seattle & Mumbai is simply incredible & unmatchable.