Home ... Home Again

Saturday was the day I had been waiting for... on Saturday I moved out of the hospital and back to home ... back to Shums, Afshan, Amma and Aapa ... back to home cooked food ... and back to generous pampering ... Of course, the home in Vellore is not like the one we have at Delhi ... while Vellore home is different, it is by no means inferior or bad ... in fact, I like the place ... Vellore ... its got the small town feel (probably cause it IS a small town) ... you don' t have to travel too far to get stuff, things move at a human pace and there there is no chaos (especially on the roads)

The fact that the doctors have shown confidence by to letting me out, is encouraging. (It proves that mine is not a total gone-case ... something we have known right from the beginning ... haven't we?) ... From now on I will take my Chemo therapy as an out-patient ... which, I must say, is not an encouraging idea ... it means that Afshan will have to stand in long ques for getting appointments and making payments ... while I will have que-up for giving blood samples and for getting Chemo ... But we prefer the out-patient status ... it comes with the comfort of home.

Home ... in Vellore ... is a 2 BHK house with 3 bathrooms, a store room and is on the first floor ... It sports a decent balcony (Shumzi's swing has been put in the balcony) ... under our balcony is the mezzanine floor balcony and a single room ... we have also taken the Mezz-floor room as well ... It serves as my day-time abode of not-so-quite (due to construction next door) solitude ... The room doubles/triples/Multiples-up as a study/office/guest bed-room/etc ... Mom has got basic kitchen stuff up and running. And we have a reliable "bai" for Jhaadu-Poocha-Bartan ... Our long-time house-help(family member by now... he is on our ration-card) Ramzaan is a big hit with Shums and helps with the kid for at least 4-5 hours a day.

So all-in-all life is going on a smooth track ... Usual things ...happening at usual pace ... Day before - we took Shums for his Hepatitis A1 immunization .... today- I have a CT-scan scheduled
in another hour ... it should tell us the current size of my tumour ... Then we have my 7th Chemo (and my first as an out-patient) on friday .... and so life goes on merrily ...

Now ... I got to go ... and have a bath before heading out to the hospital for the CT ... will keep you guys posted ...

Chemo 6 - Time to think of the inequities

Today was an odd day ... atleast it had odd beginnings ...

The day started off early ... too early ... I was up at 2 in the night (after having slept at 9 the previous) ... then tossed around in the bed ... couldn't get much sleep ... generally waited for the sun to come up ... and when the sun finally did rise ... I got up ... had bath ... had breakfast ... and when it was time to take medicines ... oddity again... I ended up taking Metformin (Diabetes medication, causes nausea) ... rather the nurse gave it to me (not her fault too, seems like the junior resident goofed up) ... apparently I was not supposed to take Metformin (it will add to the nausea of Chemo) ...(Latter Addition: Maybe the doctor didn't goof up, I am still taking the medicine ... though one doctor was saying that he would take it off ... that doc is on leave ... I have to check on the next OPD appointment)

Then ... The Chemo nurse couldn't find a good vein in my right hand ... so got the IV line set up on the left hand ... that's a second consecutive week for the hand ... the veins of my left hand had turned red after last week's Chemo ... I wonder if repeating the hand was a good thing to do ...

... there was more action for the morning ... the blog post (that I was writing in the morning) ... got accidentally deleted ...

Anyways ... Chemo started around 10 in the morning ... its 7:30 in the evening ... the chemo is still going on ... it has already outlasted a "sabzi wali maggi", two mausambis, Tehri, a cheese sandwich, mutter-paneer and rotis + a shot of Insulin ... (obviously, today was the day-off for diabetic-diet :-) ... it might go on for another hour or so.

Rituximab was the star of the day ... it went on for six long hours ... gave me enough time to ponder on the absolute unfairness of it's pricing ... The drug is Hi-Tech, cloned, artificially-engineered, trans-species, genetically-modified, all the hu-ha and the works ... at 1.35 lacs/700 mg dose ... the price is impressive too ... but I don't want to crib about the absolute price per se ... Typically a fortune is spent in developing a hit drug like Rituximab ... after all, the pharma firm(Roche in this case) would have spent lots on chasing thousands of molecules.. spending millions on clinical trials etc ... Roche has to recoup these costs and make some profits too ... hence the high prices ... In other words ... they have a case when they ask for a pound of the patient's flesh ... lets not begrudge them their rightful due ...

What I totally oppose is this - While, Roche asks for a "pound of flesh" (high price) from its American patients ... it's demanding both legs, both eyes and the good arm (impossible price) from the Indian ones ... Here's how - The drug appears to be 25% cheaper in India ( my dose would have costed around 1.8 lacs in America) ... but, in actuality, it is still way beyond the average Indian's reach ... The Aam Aadmi has to spend 12 years of his earnings on a 4 dose treatment ... the American Joe needs to spend just 5 month's of earnings for the same treatment ... how very unfair.

Indian cancer patients are getting a raw deal ... we are being made to shell out a disproportionately large portion of our life's earnings to sustain R&D cost of new drugs ... in practice, we are cross-subsidising patients who are way better-off than us ... enough is enough ... we better wake up and smell the coffee ... It's time we start taking exceptions on patent-protection of life-critical drugs ... or at least threaten the Pharma firms with such exceptions ... we have to have down to earth prices in this country...

Phew!!! ... that was serious stuff ... I have been typing away with one hand for way too long now (IV drip is on the other hand) ... the Chemo's got over too ... time to take a break ... we'll catch upwith you again in the next post ... till then ... ciao

Swinging both ways

Short recap for all those who joined late..... My problems started eight months back with frequent fevers ... doctors brushed those off as viral ... start December - X-ray showed huge growth in chest ... wrongly identified as Tuberculosis ... one and a half month of wrong medication ... a lot of small biopsies and inconclusive pathology reports followed ... finally video assisted thoracoscopy got out some good tissue samples ... these were found to be malignant ... alarm bells rang ... I had cancer ... in two days rushed to CMC Vellore ... CMC identified "Mediastinal Large B-Cell Lymphoma" as the technical name of my condition ... Started on a 12 dose, weekly, intensive chemo therapy regime called MACOP-B + Rituximab... 5 weeks are over ... 7 more to go...

Now on to the funny situation ... the latest thing that is bothering me is not my cancer, but my blood sugar levels ... they have been thrown haywire by one of the steroids that I have to take ... and to some extent by the anti-diabetic medication that is being given to control the sugar ... Early in the mornings (5 am) my blood sugar level goes extremely low (Hypoglycaemia - with sugar levels around 40 -50) ... by late afternoon it shoots up to extremely high levels (Hyperglyceamia - sugar 300 -400) ... So my sugar is swinging both ways ... in fact its swinging wildly ...

So yesterday an endocrinologist (someone who deals with the endocrine system ... I have no clue what this system is ... Wikipedia says it produces hormones) came ... He has made some suggestions to my doctors ... lets see how his gyan gets my drug-induced-diabetes in control.

Othewise, I am doing fine here ... have met lots of interesting patients ... most of whom are doing well in their treatment ... Shaheer, the pakistani 3 year old with Thalassemia has been taken into the Bone Marrow Transplant Unit ... He will remain in the BMT unit till his marrow graft gets accepted and will come out after about a month ... Mr Matthew ... the patient who has been fighting Leukaemia for six years and who boldly proclaimed all cancer patients to be "Thick Skinned Buffalloes" comes down from Chennai every 3-4 days to continue is ongoing Chemo.

On my part, I have taken up the task of making a Hindustani (not Hindi or Urdu, but Hindustani) adaptation of a children's story book called "Rahul's Challenge" . This book was written by Sister Ann Bothamly, Ex- Head Nurse, Haematology Department. She is a Britisher who has made India her home since 1968. After retiring, she runs a home for children. In her day time she visits cancer patients, especially children at the hospital. The book is a story of a boy who has leukaemia and has to undergo Bone Marrow Transplant. Sister Ann uses it as a preparatory book for all BMT children ... it gives the kids an idea of all the things that they would have to go thru ... my adaptation should help Hindi speaking kids who are not comfortable with English ... Right now haven't begun work yet ... What should I call the story ? "Rahul ki Chunauti" or "Rahul Ka Mukaabla" or a totally different name ... These are the interesting choices that I have to make now....

Rest all is cool ... Should be discharged from the hospital in another week's time ...

Chemo 5 - Caustic Truth

Folks Chemo 5 is over - It took 3 hours for the drugs to go down and I spent next one day balancing diabetic diet with nausea ... Its a catch-22 situation ... can't eat too much cause I am on diabetic diet ..on the other hand.. if the stomach gets empty (while loaded with Chemo drugs) I run the risk of getting very bad nausea and vomiting ... I think I managed the balancing act pretty well ... got away with just a slight queasy feeling and just a few hours of elevated sugar.

Fifth Chemo was a rude eye-opener... yesterday- a drop of my Chemo drug had fallen on the bed (clumsy nurse)...today morning- I noticed that drug had burnt the bed sheet .... just like chemistry lab, where spills used to burn our aprons and school dress....It's slightly unnerving...cause the chemicals in the chemistry lab were confined to the beakers, burettes and pippets...this damn thing is running thru my arteries and veins.

Check out the pictures (I have put stain and burnt area in red boundary)

Since I am posting pictures ...here's one with my balding head ... notice that my face is swollen ......

Another one with me and my little boy Shums ... i am lost in some thoughts .....

That's all for today ....more action in next week....

Pre Chemo Short Update

Morning Folks ...today is another Chemo..a repeat of the first Chemo dose.. have taken this combination before.. with minimal fuss....so its a cool day

Abbu's coming down today...will stay on for a few days.....He has been real calm and composed in front of me...that's a great support... I can rest assured that dad is thinking calmly and taking rational decisions....takes the job of worrying (and thinking of where the money is going to come from) off my head :-)

The status health wise is.....blood counts rose steadily thru last week from 3000 to 3500 to 4000....they have taken fresh samples today morning....Neutrophil count (and hence immunity) is holding good.

It's the blood sugar that needs to be stabilized. I don't want to get cataract or major eye problems (which high sugar + steroids will cause) ..so am trying hard, with the doctors, to get the sugar in control. We have attacked sugar on all fronts ..... regulated diet, oral medication,insulin shots and exercise ... almost every trick is being tried.

I am running a small experiment of my own...using my glucometer I trying to figure out the ideal exercise schedule for myself (should it be pre-meal?, post-meal?..how hard? ..for how long?...how much after insulin? Amaryl?) Its turning out to be good fun. In fact I am doing so much of self-blood-sugar-testing that I ran of testing strips in the morning, so took a morning walk to the pharmacy to get more.

There seems to be an interesting day ahead....too much of action..dad coming...he will have a car with him...which means that Shums can come and visit me too......I am looking forward to it all...

Breakfast has come in ......and I just can't resist the idea of attacking it right away.....

so long for now....will write again after the Chemo

February 14

Yesterday was Feb 14 - St Valentine's day. It's also my nephew Kabir's birthday..so for me.. its more Kabir's Day.. (without the St or "Sant"..hello.. I am talking my nephew here). Kabir turned 3 yesterday .....and from his pictures I can make out that there's a cute little Alam who will (in true Alam tradition) be super-hit in Switzerland(that's where he lives).

There's another 3 year old ...who was on my mind yesterday... He is two rooms away from me and has come all the way from Peshawar, Pakistan. This little kid has Thalassemia Major. The disease will leave him with a compromised quality of life and life-long dependence on blood transfusion. He has come for a bone marrow transplant- the transplant is the only hope against life time of transfusions. Guess his marrow donor....it is his younger brother...who is just 2 years old.

The ironic part in his story is ...that Thalassemia could have been avoided by a simple screening test (a blood test). This child's, his younger brother's and his whole family's troubles would never have risen if his parents had known about the Thalassemia test and had bothered to get the screening done. Indians are prone to Thalassemia and must be careful.

I think Valentine's day is just the right day to remind all you wonderful couples out there..If you are planning to start a family..please don't forget the Thalassemia test along with other pre-pregnancy and post pregnancy screening tests. I have seen many Thalassemia children in the ward here...believe me folks the risk is just not worth taking.......remember you owe the test to your kids....

With that message ..me signs off.....will send you a pre-Chemo update tomorrow morning.

Sweet Surrender

Yes it is true- The Sweets are going to be surrendered....so will be the chocolates, biscuits and double helping of mom's food....gone are the days of eat, drink and be merry...its good-bye Khana-khazana and hello to Kalahandi
{for those weak in geography- Kalahandi is the place in Orissa, India, where (sadly) starvation deaths are a regular feature}

All my gloating about eating my fill and more (in post "year of the pig") has boomeranged...someone's evil eye ("buri nazar"), someone's voodoo and a lot of jealousy have come together and taken the pleasures of unrestrained hogging away from me.....

Want details?....here the latest "twisht" in my tale -

Fact is that I take a corticosteroid by the name Prednisolone (75 mg daily). Apart from fighting my tumour, It gives me a feeling of well-being and an very healthy appetite.

Now, it seems, it is also giving me hyperglycaemia and possibly insulin-resistance. This means that I have very high sugar levels in my blood ....and possibly, Insulin (the stuff that's supposed the help use-up this sugar) has become increasingly ineffective.(Well, I have pre-existing diabetes trouble- here's my September-06 post on Diabetes)

Yesterday my sugar level was around 425 (normal range 80-140), They gave me a shot of Insulin...the damn thing reduced a teeny-meeny bit to 380.....they gave another shot of Insulin and still blood sugar was 250 at the time I went to sleep. (despite a measly two-chappati dinner)

Now the two ways- other than Insulin, of reducing blood sugar are - controlled diet and exercise. Since I can't exercise too much, the resident doctor has decided that I must be put on very controlled diet. To be precise - a 1500 kcal/day diabetic diet.

1500 kcal/day will probably just about keep me alive and is likely to give me that empty-stomach feeling. What makes it a torture is the fact that Prednisolone will make me feel hungry, while rest of the Chemo-drugs will give me nausea on empty stomach. This has put me in a really tight spot - one right between the rock and a vary hard place.

So today,I have decided to be nimble and tactful with the dietician, maybe I can negotiate some tasty food and space it well enough to beat the hunger-spasm and the nausea.

Don't know if it will work......lets see......

Chemo 4 - Should be smooth sailing now

Chemo 4 was possibly the easiest and fastest of all Chemo's. Chemo-nurse started an IV --> put a saline line on one valve --> Vincristine and Bleomycin were side-pushed (from the other valve).. and in 5 minutes flat and it was all over...short and simple.

From now on, I expect nothing but smooth sailing in the next 8 Chemo cycles.It's Just that the blood counts should hold on. WBC is still at 3000, but... the good news is that these WBC(leukocytes) are mostly "Neutrophils" (80% of WBC). Neutorphil is the stuff that eats up infection casing bacteria, fungi etc.... With about 2400 Neutorphils/Microliter of blood..I still have a decent cover against infections.

With this stable situation, I will leave hospital and move on to the temp-home that Amma and Afshan have set up in Vellore( prolly after Monday's blood counts at the hospital). Then I would need to visit the hospital only once a week to get my Chemo.

Actually, I could go back to Delhi and take remaining Chemo there....but I prefer to stay in Vellore...the deciding factor is not the Chemo, but management of any possible complications. For managing the unexpected odd situations,I would prefer CMC over any place in Delhi. Not that I want an odd situation to arise, but just to be on the safe side if it did.

Rest all is good, I am itching to leave the hospital. The room and the surrounding are chipping on my sanity. I wonder how people keep their heads from going bonkers when they have to stay on for months (some critical patients have to... someone in my ward once stayed for 5 months)

I asked the 5 month-stay fellow, how he deals with it. (Actually he has been fighting Bone marrow cancer for an impressive 6th year now)...He said......

We Cancer Patients are "Thick Skinned Buffaloes"

Interesting words...I guess hope/faith and thick-skin keeps a lot of us guys in good fighting spirits.

With that, your thick skinned friend would take your leave..got breakfast to catch up with....Will keep you guys posted..cheers