March 20, 2014

Well...well...well...where do I start ! Let me start with -- Happy first day of Spring ! Although looking outside, it still feels like an early January day - cloudy, windy, coat or no coat, kids running out the house to check their own "temperature" (BTW, why do we need weather persons)...

When all these "fine" things settled, elder daughter, Meera, got dropped off at school by mommy and today was special, the younger one Maya had both parents to drop her off at school.

Many of us complain about things that they don't have or would like to have -- let me tell you a small event that has had profound impact on me today -- knowing I was going to check into the hospital and likely going to stay for several weeks, the simple gesture of dropping my 9-year old to school, and giving her a tight hug and a kiss on her cheeks, and she in turn saying "Get well daddy...I love you" was undoubtedly the most significant moment in my life today...

Which made me pause and think -- Why do we not find and enjoy simple pleasures in our lives ? What difference does it make if you drive a 10 year old Toyota versus 6 month old Mercedes that looks immaculate until the first rain and slush ?

Then it was off to my soon-to-be second home. Even the patient registration guy recognized me by name...Indiana University has a flowing water ban -- so, everyone gets to use only bottled water. The registrar proudly offered water to every one seated!

Then my name was called by a familiar nurse -- she has gotten to know me that she insists she will not "torture" when inserting the tube into my Chemo Power Port.

I have endured much more serious pain and let her suck some blood (perhaps I have crossed the magic mark of 100 times my blood has been tested since Jan 2013) sample. Then after checking my weight and pressure, was put away in a windowless room along with my wife.

We knew we had at least 10 minutes before the doc would arrive. Pulled out our laptops and did the customary -- check email, check NYTimes headlines, check FB. By then Dr. Sayar (a brilliant hematologist) arrived.

What followed was a flurry of biology jargons, frankly I couldn't understand. In the back of my mind, I had one burning question -- after all these treatments, will I live or die ?

I couldn't muster enough energy to ask that question. I took one key message from the meeting and from my wife -- let us focus on the next 2 weeks.

So, off we went to our sunny and brightly lit room on the 3rd floors. I must say, these rooms are luxurious. A patient and a spouse/brother/mother could spend the night with the patient.

Ms. Misty the nurse was very pleasant and several other nurses who knew me came to say...at the end, what could they that would be appropriate -- "Glad you are here ?" "Glad to see you", "Have a nice stay" or "Good seeing you"...fortunately, I was at the back of the room talking to the doctor on "duty"...even he had the words "Good seeing you..." then caught himself and said "Suresh, you know what I meant !"

For the patient it is easy -- "Thank you so much".

Then Misty tells me the treatment will begin at 3pm or later. So, I let my wife head to her work and I had a "restricted" low-carb diet. Tried to rest for an hour, only to be woken up twice to check on my vitals -- isn't that the job of the machines ?

Then came a group of nurses carrying various colored bags -- I asked them what the colors indicated...their first response was "I need to google it"...then they hooked me up to saline and this "blue" med.

I was fixated on the noise that each drip made and then dosed off...30 minutes later another bag, this time "light blue" bag was hung. This ran for 20 minutes. And finally a clear bag of fluid was hung and I felt I was finally home...

I was elated when all the meds were over and done with and was hoping the cord that ties me to the 'former girl friend (the IV Pole)" would be disconnected and we could go our separate ways.

Unfortunately, the doctor decided I needed more fluids -- tell that to type-II diabetic, who, normally drinks gallons of water each day. So for then, there was a tug of war between the girlfriend and myself -- who moves first and who follows.

Kept a close eye on my girls since they came home -- phone calls, texts, facetime, emails. What an invention FaceTime is -- if the carriers can upgrade their infrastructure, FaceTime would take off. I have used it sparingly before, but today was my real test and I must say, it is a beautiful piece of software, and so simple to use. Thank you Steve Jobs.

All in all, today was a good start to this new journey. I hope it continues and I want to come out on the other side - pale, thin, bald, hunched over, and many other nuisances - but alive so that I can continue to be the husband, brother, dad to my daughters, and a son to a mom who is enduring so much pain watching one of her sons fighting cancer.

With that I close wishing you all peace & quiet !

March 19, 2014

Today has been a good day -- everyone got up on time and with the weather not-so-cold, the elder daughter decided to ride the bus.

I made it a habit of dropping my younger one, Maya. Anytime Maya heads to the car, our little 4-legged Oliver, the dog runs before anyone to hop in the car. There is nothing more refreshing to see a dog catching cool, fresh air with the window slightly cracked open.

My day then began with multiple cups of coffee. Knowing that I will be admitted tomorrow, there have been near non-stop phone calls and a flurry of emails.

I want you all to know that I appreciate your prayers and support immensely.

As I sat at my work desk with a single / small light to illuminate my laptop, my mind was racing with many 'reflections'.

Chief among them is my family...my wife, my two daughters and my 79-year old mother. Throughout 2013, they stood by me every step of the way.

I can never tell or imagine what goes on in my wife's mind. Even during my worst times (when I didn't wake up for 2 days), she kept her poise and believed in the doctors. Her inner strength is one I am jealous off.

I am not a romantic person -- I am as direct as one gets. So, it is immensely hard to convey my appreciation in any other way, other than a simple, direct THANK YOU.

We are blessed to have two beautiful daughters who are very much like my wife. If there is a competition in the house as to who sheds the most amount of tears, I would be first in line, and my wife would be last in line.

I will never understand their emotions this evening and what is to come tomorrow. One thing is for sure -- it is not fair in life to subject young children to the struggles of patients with illnesses like Cancer. It may harden them, but if there is a fairness switch, I would keep it in the 'off' position.

Well, here I am -- starring at the wall to the sound of the dishwasher and haven gotten of a phone call with a crying mother, trying to make a list of things I plan to do while the innocent tubes pump some unique combination of 'poison' into my body.

If I am able to see those individual rogue cells dying, I would take comfort in the fact the poison is doing some "good"...it sure doesn't feel fair (fairness question again) to know there is NO visible outcome from the 'poison' being pushed in.

Managed to get tax information in order. The next anxiety in line is refund or pay !

At this point and in the grand scheme of things, refund or pay more , seems insignificant...

On that note, I am signing off for the evening / night -- hoping for a bright and sunny start to tomorrow !

March 18, 2014 | 2

I hope everyone got to enjoy a bit of Sun. It certainly brightens one's day.

I will soon (Thursday) be entering into unchartered water (except for chemo, not the side effects) and discussions around the various "things" inside a DNA.

As the doctors have repeatedly explained to me that I may be "forced" into a clinical trial environment.

Up until late afternoon, the magnitude of the 'clinical trial' or the bone marrow transplant itself had not hit me.

Had a cup of coffee and checked my Gmail -- and there it was in black & white -- a copy of the most recent bone marrow biopsy. I know it has travelled to (my brother's lab) Harvard and I am hoping their collective brains can make me understand what could happen...

In the meantime, from some unknown source, butterflies have entered my stomach. Lack of appetite, standing in weird places inside the house, in a penchant mood (thinking selfishly about my day), instead of fixing snacks for the girls.

After my prolonged stay at the hospital and subsequent trips to the hospital, last year, drained all my energy and left me 'deeply depressed'.

This is the first time I am disclosing that since 1992 I have had to live with mild-stronger form of depression. Until about 2000, I was also getting severe migraines.

As I near the time to check into the hospital, my anxiety and depressive mood-swings are beginning to join my party along with the butterflies.

Depression is a medical illness. If you are hiding it or wishing it would go away, please consult your doctor.

I have couple of more hours to work on Taxes and keep myself busy.

Cheers and have a good day.

March 18, 2014 | 1

Good morning to everyone --

My day began as normal -- the alarm going off at 5:00 am and for a few minutes, I get energized smelling the scent of fresh coffee.

By about 6am the 'drill' to wake up the kiddos begin. They might have agreed to one type of breakfast the night before, but they are "privileged" to change their choices.

When you think you have things under control, the magic of "TV" appears....then the saga to get them finishing up breakfast and shutting off the TV goes like this -- 'Daddy, just 2 minutes." Only in their vocabulary, 10 minutes is equal to 2minutes.

Just when I think they are ready to leave the house for the school bus, there is a frantic run back to the house in search of something very "important" (Guess what -- the cell phone).

It is 7:30am now. I feel tired and all the bones are crackling. Should I assign the blame to something happening inside my bone marrow ? Or is this a every day drama in every house with school going kids ?

March 17, 2014 | 2

Since my postings from a few days ago, I have been overwhelmed by the support and prayers of many many friends.

I sincerely thank you for your support and prayers. I have many more rough patches to navigate and I hope you will extend your support and prayers.

I decided to write a second note today because -- I spoke to the Bone Marrow Transplant Coordinator (someone to be very close friends with).

She immediately recognized me and remarked that my hematology/oncology doctor, Dr. Sayar has been working "overtime" with the transplant experts, on my behalf. It is a very nice feeling when you know your team of doctors are planning some of the steps, anticipating the arrival of the patient.

It is also very comforting to know that the expert in AML (Acute Myleoid Leukemia) who heads the Dana Farber cancer center, and Harvard professor, speaks very highly of the Simon Cancer Center's leader Dr. Larry Cripe and his team. It happens so that my brother at Harvard is a friend of Dr. Stone and they are tracking my case (perhaps for reasons of ethnicity, clinical trial, and a general interest in my progress. Age-wise, I am considered young for these diseases )

Back to the point I was going to make -- The transplant coordinator suggested that she has identified a stem cell cord blood which could an option; as well as she has located  a Donor who could be a near perfect match.

If there is one key message I would like to send to every reader of my posts -- please register yourself as a bone marrow donor. The process requires you giving just a drop of blood at the proper registry. The bone marrow registry is an international registry and you can be saving a young child's life, right now.

Please don't put it off to tomorrow or the weekend. If you are in Indiana, IU is a great place to start.

On behalf of other cancer patients, thank your support and action.

March 17, 2014

I must say I had a decent sleep, even though strange thoughts and dreams were crowding my brains. Amongst all these confusions, I did wake up at 5 and made that first carafe of coffee. 

From that point on, the brain latches onto a singular task -- get the girls ready for school and no major upsetting event in the process.

It is 8:10am and I am finally sitting down. 

Overnight and late last evening, I was trying to understand in detail what my treatment journey would like -- here is what I have understood so far.

1. I will start Chemo therapy on Thursday and will go on for 5 days. It is a "cocktail" of 3 drugs (I hope one is to help me sleep!).

2. After 5 days, the next 2 or 3 weeks are considered the "recovery" period. 

3. Two weeks from the first day of Chemo, a bone marrow biopsy will be done to gage progress.

4. If there isn't sufficient progress, I will be administered more chemo -- the idea being, getting me into "remission"

5. Assuming I am in remission during the 2nd week to 4th week, I will get to go home.

6. In parallel to all this, there will be (frantic, I believe) search for a bone marrow donor who may match my dna. 

7. Assuming there is a match, the bone marrow transplant team will take over...{at that point, I literally will be in the hands of GOD)

8. Assuming there is no bone marrow match, I will undergo "consolidation" chemotherapy to flush out any and all remaining leukemic cells. 

If step #8 was chosen, my oncologist has said, there is 100% probability, Leukemia will come back. 

With such dire prognosis, I asked my doctor, what could my friends / relatives do to help ? His immediate response was to have as many childhood friends / neighbors / classmates / Indians donate their bone marrow.
One would never know whose donor marrow would match a person needing the transplant and thus saving that person's life. 

Please take a moment to consider -- here is the contact information for my Cancer Center...they do ship out kits or will provide proper instructions. I am especially calling on my friends/relatives originally from India or first generation immigrants. {Out of 1.3 billion people. there has got to be one that matches my DNA !}

for general information, please call Indiana University Health Melvin and Bren Simon Cancer Center at888.600.4822 

March 16, 2014

Getting to bed last night was a bit more easier than the previous nights. It is perhaps that I am coming to terms that I have to remain much stronger and "bulk" up to fight this disease. 

As the thinking goes, if you have a specific purpose, you begin to focus like a laser. When I got up this morning, that is exactly how I felt / feel.

I am starting my Chemotherapy on the 19th of March (this coming Wednesday). 

In some ways, preparing to get admitted for the treatment is like packing for a business trip for a few weeks. One gets very used to their normal work surroundings, that when you cannot find that stapler or the ruler, you sort of feel you are in a foreign land. Add to it, you can't just get up and go to the nearest office supplies store.

The ever-present "girl friend" (the IV pole) will remind you politely, if you do step away from her, 3-4 feet (happens in real life too!).

That is the news for this wonderful / cloudy / windy / chilly Sunday.

I will begin to practice watching Fox News -- haven't figured out why the cancer center doesn't care CNN.