Beginning around 10am, the body has gone into a state of shock...with the WBC counts at its lowest, the mouth sores have made it quite unbearable for the patient.
If you are surfer. a nice surf would sound temp a couple os surfs would , you can ...
Enjoy !
Thursday, March 27, 2014
Wednesday, March 26, 2014
March 26 | 2, 2014
Well....well....well...does anything for a cancer patient come easy and go easy ??? Absolutely not......otherwise how does the BIG-MAN "C" maintain its reputation as the 'weapon of mass destruction"...
I would like to call on Veep Dick Cheney to hunt for the 'WMD' -- unlike his previous attempts, there is no ambiguity on how to say or spell this "WMD" -- it is simple.
With a brand new heart, I suspect you are itching to get into the 'ring' and in a matter of 4 or 5 rounds, will pull out of the biggest upsets of this century !
I will be watching in my cheer-leading outfits !
Back to some real news -- the mr. and mrs. decided they wanted to be swimming with the big ships, rather than piddly speed boat or a 4 HP engine.
So we have pulled out one of the continuous pain-med pump and it has already shown results...I noticed a very strange thing with two of the mouth sores -- they have formed in the shape of a "heart" !
Once in a while, I do appreciate a kiss on the cheek or a good hug from the girls...but I didn't ask mr. and mrs. mouth sores to dress up for a party occasion !
I hereby serve you both immediate eviction notices !
With that, it is time to say good night !
I would like to call on Veep Dick Cheney to hunt for the 'WMD' -- unlike his previous attempts, there is no ambiguity on how to say or spell this "WMD" -- it is simple.
With a brand new heart, I suspect you are itching to get into the 'ring' and in a matter of 4 or 5 rounds, will pull out of the biggest upsets of this century !
I will be watching in my cheer-leading outfits !
Back to some real news -- the mr. and mrs. decided they wanted to be swimming with the big ships, rather than piddly speed boat or a 4 HP engine.
So we have pulled out one of the continuous pain-med pump and it has already shown results...I noticed a very strange thing with two of the mouth sores -- they have formed in the shape of a "heart" !
Once in a while, I do appreciate a kiss on the cheek or a good hug from the girls...but I didn't ask mr. and mrs. mouth sores to dress up for a party occasion !
I hereby serve you both immediate eviction notices !
With that, it is time to say good night !
March 26 | 1, 2014
Greetings --
I had a gut feel that I will post more than once, to get some of the 'building irritations' out of the system.
I felt reasonably well, when I went to bed last evening...but "mr. and mrs. ugly mouth-sores" decided it was time to pop their ugly heads and make it known they are at the 'door, knocking' around mid-night.
With all the power I could muster, I called on my valiant fighters (nurses and numbing drops) to put down these intruders; but to no avail.
By the time my doctors made their rounds, mr. and mrs. had settled quite well as the center-piece of any and all discussions.
We have upped the pain-meds to counter the intensity, but they are here to stay for another week, as my unexpected guests.
Which leads me to this questions -- I realize mr. and mrs. have to show their 'macho-ness', but why not choose an open 'skin' area and have their parties ?
Oh well, it is time to feed these mr. and mrs. and try to ask for an hour of peace and quiet !
Will report back how they do later in the day !
I had a gut feel that I will post more than once, to get some of the 'building irritations' out of the system.
I felt reasonably well, when I went to bed last evening...but "mr. and mrs. ugly mouth-sores" decided it was time to pop their ugly heads and make it known they are at the 'door, knocking' around mid-night.
With all the power I could muster, I called on my valiant fighters (nurses and numbing drops) to put down these intruders; but to no avail.
By the time my doctors made their rounds, mr. and mrs. had settled quite well as the center-piece of any and all discussions.
We have upped the pain-meds to counter the intensity, but they are here to stay for another week, as my unexpected guests.
Which leads me to this questions -- I realize mr. and mrs. have to show their 'macho-ness', but why not choose an open 'skin' area and have their parties ?
Oh well, it is time to feed these mr. and mrs. and try to ask for an hour of peace and quiet !
Will report back how they do later in the day !
Tuesday, March 25, 2014
March 25, 2014
Well, today is the first day after the first round of chemotherapy. Had a decent sleep and got up at a reasonable time. The doctor and his team round the rooms much earlier. So, everything was wrapped up by about 8:15am.
No big news, except the blood counts are beginning to drop. I can tell from the couple of mouth sores that have popped up under my tongue. An irritable place for a sore to develop.
There is a magic "mouth-wash-potion" called "Philadelphia mouth-wash" (perhaps to go along with the cream cheese !) -- this is the secret to numbing and getting relief for the mouth sores.
Whoever discovered it, God bless -- what a relief !
I had one more day of visit from my brother and mother -- which is always nice. Although, with my mother, things get repetitive.
It appears that the fatigue will begin to set-in over the evening and tomorrow -- which is expected. It would be nice to get it over with and proceed to the next phase of the treatment plan !
An occasional snow fell throughout the day -- I pray that we are done with winter and ready to see some warm temperatures.
With that warm thoughts, let me wish you all a good evening and night !
No big news, except the blood counts are beginning to drop. I can tell from the couple of mouth sores that have popped up under my tongue. An irritable place for a sore to develop.
There is a magic "mouth-wash-potion" called "Philadelphia mouth-wash" (perhaps to go along with the cream cheese !) -- this is the secret to numbing and getting relief for the mouth sores.
Whoever discovered it, God bless -- what a relief !
I had one more day of visit from my brother and mother -- which is always nice. Although, with my mother, things get repetitive.
It appears that the fatigue will begin to set-in over the evening and tomorrow -- which is expected. It would be nice to get it over with and proceed to the next phase of the treatment plan !
An occasional snow fell throughout the day -- I pray that we are done with winter and ready to see some warm temperatures.
With that warm thoughts, let me wish you all a good evening and night !
Monday, March 24, 2014
March 23 | 24, 2014
Greetings friends --
Yesterday and today have been fairly quiet around my end. No exciting events to report, although today is the final day of chemotherapy for this phase of the treatment. Perhaps, I will be allowed to be separated from my "steadfast girlfriend (the IV pole)". I must say she has no emotions and come rain or shine, keeps jogging along. A new definition for "enduring relationship".
From tomorrow, until next Thursday, all eyes on the all important blood counts - White, Red, Platelets. If they drop quickly and my bone marrow can generate new ones without producing leukemic cells, that would be a significant milestone.
Once I reach that point, if the blood counts are within normal range, I may get to go home for some time, before discussions on transplant begin.
With the advantage of my brother visiting, we had a chance to get re-assurance from the team of doctors that they are doing everything possible to 'fix me'.
There are not enough words to explain how dedicated and committed these doctors are and I am so fortunate to be in this city that has a truly world class facility.
My girls made a visit to see me over the weekend. That was a joyous occasion.
Other than the above, I am gearing up for a week of slow decline, followed by a climb-up. Hopefully my optimism, faith and spirits remain high and guide me through the 'happy path'.
Until then, have a cheerful week and enjoy your family !
Yesterday and today have been fairly quiet around my end. No exciting events to report, although today is the final day of chemotherapy for this phase of the treatment. Perhaps, I will be allowed to be separated from my "steadfast girlfriend (the IV pole)". I must say she has no emotions and come rain or shine, keeps jogging along. A new definition for "enduring relationship".
From tomorrow, until next Thursday, all eyes on the all important blood counts - White, Red, Platelets. If they drop quickly and my bone marrow can generate new ones without producing leukemic cells, that would be a significant milestone.
Once I reach that point, if the blood counts are within normal range, I may get to go home for some time, before discussions on transplant begin.
With the advantage of my brother visiting, we had a chance to get re-assurance from the team of doctors that they are doing everything possible to 'fix me'.
There are not enough words to explain how dedicated and committed these doctors are and I am so fortunate to be in this city that has a truly world class facility.
My girls made a visit to see me over the weekend. That was a joyous occasion.
Other than the above, I am gearing up for a week of slow decline, followed by a climb-up. Hopefully my optimism, faith and spirits remain high and guide me through the 'happy path'.
Until then, have a cheerful week and enjoy your family !
Saturday, March 22, 2014
March 22, 2014
Let me begin with some exciting news -- my middle brother and my mother are visiting from Boston. They spent an hour visiting with me. And I got to see my elder daughter for the same hour.
My little one decided playing with her 'bestie' was more interesting than visiting an aging dad at the hospital ! Sign of times to come !
My day began around 4am -- I got carried away with some college games last night and didn't keep to my schedule...so....all morning I took short naps until about 2:30pm.
Visitors left around 4:30pm and now I am sitting and starring at the second chemo drug gently slipping into my blood stream. Earlier, when the doctor visited, I asked why there is a change in the drug combination this time, as compared to last year.
I found his explanation quite simple (at times 'naive') -- 70 years of following this protocol, they believe, human cells have a LONG memory -- even though it may be 11 months since my last chemo, the cells remember those drugs and its composition and potency. As a result, the efficacy of the same drug is vastly reduced.
I suppose, finding a cure, is like tricking these "intelligent" cells from forgetting the past and be "forced" to kill the rogue cells.
The good news in all this is that -- I will be done with chemo therapy in 2 more days (monday night)...then it is a matter of "patience" for the body to get weak and then the bone marrow to begin generating new (and hopefully clean) cells.
This phase may take 2-3 weeks depending on how so fast my blood counts come to normal range and my bone marrow is void of any leukemic cells.
After that, till a decision on Bone Marrow Transplant is made, I could be home / work recovering. I am really looking forward to this 'gap' so that I can be home and see the family more.
Speaking of family and support, I was reminded profoundly of the support my family has been providing since I was first diagnosed.
I know and recognize, I am one of the many lucky ones who have family support and have access to one of the very best cancer centers in the US.
Many times during these stays, I remind myself of the so many millions who don't have the family support or lack the resources needed to get proper treatment.
There are many wealthy individuals who generously donate resources to various cancer charities. As a lay person, if you were to ask me how you can get involved, the easier option is to volunteer your time in a nearby cancer home or hospital. My knowledge informs me that cancers are not contagious, if proper hygiene is practiced.
Overall it has been a easy day.
With that I will end today's diary a little early. Have a good weekend !
My little one decided playing with her 'bestie' was more interesting than visiting an aging dad at the hospital ! Sign of times to come !
My day began around 4am -- I got carried away with some college games last night and didn't keep to my schedule...so....all morning I took short naps until about 2:30pm.
Visitors left around 4:30pm and now I am sitting and starring at the second chemo drug gently slipping into my blood stream. Earlier, when the doctor visited, I asked why there is a change in the drug combination this time, as compared to last year.
I found his explanation quite simple (at times 'naive') -- 70 years of following this protocol, they believe, human cells have a LONG memory -- even though it may be 11 months since my last chemo, the cells remember those drugs and its composition and potency. As a result, the efficacy of the same drug is vastly reduced.
I suppose, finding a cure, is like tricking these "intelligent" cells from forgetting the past and be "forced" to kill the rogue cells.
The good news in all this is that -- I will be done with chemo therapy in 2 more days (monday night)...then it is a matter of "patience" for the body to get weak and then the bone marrow to begin generating new (and hopefully clean) cells.
This phase may take 2-3 weeks depending on how so fast my blood counts come to normal range and my bone marrow is void of any leukemic cells.
After that, till a decision on Bone Marrow Transplant is made, I could be home / work recovering. I am really looking forward to this 'gap' so that I can be home and see the family more.
Speaking of family and support, I was reminded profoundly of the support my family has been providing since I was first diagnosed.
I know and recognize, I am one of the many lucky ones who have family support and have access to one of the very best cancer centers in the US.
Many times during these stays, I remind myself of the so many millions who don't have the family support or lack the resources needed to get proper treatment.
There are many wealthy individuals who generously donate resources to various cancer charities. As a lay person, if you were to ask me how you can get involved, the easier option is to volunteer your time in a nearby cancer home or hospital. My knowledge informs me that cancers are not contagious, if proper hygiene is practiced.
Overall it has been a easy day.
With that I will end today's diary a little early. Have a good weekend !
Friday, March 21, 2014
March 21, 2014
Normally, Friday would be a day of relaxation and family dinner (outside the house, I mean). Instead, I am getting ready to eat a sumptuous dinner of salad, tossed salad, grilled chicken salad, and sugar-free orange sherbet, specially cooked (I meant, specially microwaved and / or right out of the industrial sized refrigerator)...
This is all done for the "GOOD OF ME" -- so that my sugar levels are "well maintained". I am 48 years old, fairly knowledgeable about various meds -- it is the "Predinosoles (steroids)" that is given before the chemo that swings the sugar levels.
I tried telling this to one of the well-dressed "Ambassadors" (as they are called) once, and I got a nice commentary on how they "preserve" the food fresh for the patients and guests !
Today began two times for me -- one, right after 2 minutes from midnight (for blood work) and another at 4am for "vital signs" -- if I am talking, walking, seeing, breathing, drinking a sip of water -- aren't these enough to determine my vital signs are active and working...do they have to pump up my cuff to determine the pressure...
From 4am to 10am -- it was the "patience test" -- first, I tried to beat the breakfast line and order mine first, thinking it would be "extra fresh" -- no, the lines were jammed to the point I had to wait 15 minutes for my turn. Talk about a lesson in patience at 4 am. How about we send our children to such a class ? Wouldn't the world be a better place ?
Next line, freshen up and wait for the "Gods" (oh, I meant, Docs) to make their rounds...it is not one doc, it is a team of 10 doctors and soon to be doctors, pharmacy techs included.
The doctor goes like this : "How do you feel today ?" Me: I feel good, a little tired; otherwise doing well;
In my line of work, accountability goes both ways. So, I didn't miss my chance here : Me to the Doc: "How do I look and feel from your perspective? Am I on track for recovery?"
He politely turns to the Resident and gestures him to answer. He is the only one who came prepared to share my blood count numbers; so he reels off the numbers. I go "What do those numbers mean to me? Good, Bad, Terrible ?"
Silence..with a shoulder shrug...
Except the Resident, no one else talked or took notes, no questions after the main GOD left...is this called "learning on the job". Suddenly, patience turned to silence...what an awesome phenomenon.
Skipped lunch in favor of a quick nap, as I knew I would be woken up at 2pm for "pre-chemo"
meds. And promptly at 3pm the "blue chemo" drug began dripping from my former girl friend. For a moment I thought why is she crying blue ?
30 minutes later it was clear tears dripping; then the light blue tears.
The nurse then warns me -- your urinal might look 'aqua green"..great and important observation!
This one for my post chemo memory !
It is 7:25pm -- ordered dinner around 6:10pm....let me eat before the plastic spoon melts in the heat !
The most important lessons I learned today are -- patience, accountability. No matter who you are or what high (or low) position you hold, being accountable is fundamental.
On a final note, having stayed at this Cancer center last year, I picked up on an unique culture -- every one who works for IU Simon Cancer Center, when they complete their service or delivery or seeing a patient, all of them, without regard for their own position or time, will ask this question, in the most sincere way : "Is there anything else I can do for you today ?"
This culture has engrained a new and sincere practice in me, and that is -- "Thank you so much"...
With those words, I am signing off on this beautiful Friday. I hope to be enjoying warm and sunny Fridays very shortly.
Cheers for a good weekend !
This is all done for the "GOOD OF ME" -- so that my sugar levels are "well maintained". I am 48 years old, fairly knowledgeable about various meds -- it is the "Predinosoles (steroids)" that is given before the chemo that swings the sugar levels.
I tried telling this to one of the well-dressed "Ambassadors" (as they are called) once, and I got a nice commentary on how they "preserve" the food fresh for the patients and guests !
Today began two times for me -- one, right after 2 minutes from midnight (for blood work) and another at 4am for "vital signs" -- if I am talking, walking, seeing, breathing, drinking a sip of water -- aren't these enough to determine my vital signs are active and working...do they have to pump up my cuff to determine the pressure...
From 4am to 10am -- it was the "patience test" -- first, I tried to beat the breakfast line and order mine first, thinking it would be "extra fresh" -- no, the lines were jammed to the point I had to wait 15 minutes for my turn. Talk about a lesson in patience at 4 am. How about we send our children to such a class ? Wouldn't the world be a better place ?
Next line, freshen up and wait for the "Gods" (oh, I meant, Docs) to make their rounds...it is not one doc, it is a team of 10 doctors and soon to be doctors, pharmacy techs included.
The doctor goes like this : "How do you feel today ?" Me: I feel good, a little tired; otherwise doing well;
In my line of work, accountability goes both ways. So, I didn't miss my chance here : Me to the Doc: "How do I look and feel from your perspective? Am I on track for recovery?"
He politely turns to the Resident and gestures him to answer. He is the only one who came prepared to share my blood count numbers; so he reels off the numbers. I go "What do those numbers mean to me? Good, Bad, Terrible ?"
Silence..with a shoulder shrug...
Except the Resident, no one else talked or took notes, no questions after the main GOD left...is this called "learning on the job". Suddenly, patience turned to silence...what an awesome phenomenon.
Skipped lunch in favor of a quick nap, as I knew I would be woken up at 2pm for "pre-chemo"
meds. And promptly at 3pm the "blue chemo" drug began dripping from my former girl friend. For a moment I thought why is she crying blue ?
30 minutes later it was clear tears dripping; then the light blue tears.
The nurse then warns me -- your urinal might look 'aqua green"..great and important observation!
This one for my post chemo memory !
It is 7:25pm -- ordered dinner around 6:10pm....let me eat before the plastic spoon melts in the heat !
The most important lessons I learned today are -- patience, accountability. No matter who you are or what high (or low) position you hold, being accountable is fundamental.
On a final note, having stayed at this Cancer center last year, I picked up on an unique culture -- every one who works for IU Simon Cancer Center, when they complete their service or delivery or seeing a patient, all of them, without regard for their own position or time, will ask this question, in the most sincere way : "Is there anything else I can do for you today ?"
This culture has engrained a new and sincere practice in me, and that is -- "Thank you so much"...
With those words, I am signing off on this beautiful Friday. I hope to be enjoying warm and sunny Fridays very shortly.
Cheers for a good weekend !
Thursday, March 20, 2014
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 !
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 !
Wednesday, March 19, 2014
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 !
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 !
Tuesday, March 18, 2014
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.
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 ?
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 ?
Monday, March 17, 2014
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.
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.
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
for general information, please call Indiana University Health Melvin and Bren Simon Cancer Center at888.600.4822
Sunday, March 16, 2014
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.
I will begin to practice watching Fox News -- haven't figured out why the cancer center doesn't care CNN.
March 15, 2014
Didn't do much today, other than thinking of what is to come beginning this wednesday. I have had many emails back and forth with my oncologist and he has been unbelievably helpful.
I have a better handle on the treatment plan -- a) 3 drug Chemotherapy for 5 days; for a few weeks (not sure of it now)....b)
Whether step a puts me in remission or not, the next step is to start the bone marrow transplant process. There maybe a window of time between step a and b, where I would come home to recover a bit.
What is not clear to me is -- what if a match is not found, not even a partial match ? Would it be a case like organ transplant patients waiting for organs to become available ? Lots of questions and answers to understand, and try to make an informed decision...will need lots of prayers and good wishes !
Whether step a puts me in remission or not, the next step is to start the bone marrow transplant process. There maybe a window of time between step a and b, where I would come home to recover a bit.
What is not clear to me is -- what if a match is not found, not even a partial match ? Would it be a case like organ transplant patients waiting for organs to become available ? Lots of questions and answers to understand, and try to make an informed decision...will need lots of prayers and good wishes !
March 14, 2014
Needless to say, I woke up at 5:30am and went straight to my email. No news had come from my doctor. Did my normal routine and worked from home, so that I could nurse the bone marrow biopsy area.
I fixed myself a cup of coffee and when I checked the emails, one had arrived from my doctor.
After reading through the first line, it was clear - Cancer is back ! That moment in time is frozen in my brains. I felt like a billion tons of brick had come falling on my head and shoulders.
Managed to read through the email...by the end tears flowing like a waterfall, and semi-paralyzed, called my wife at work and asked her to come home. Kids were home by then and knew something was not right with daddy. With all the emotions flowing, I let them know Leukemia is back, and that my doctor has a solid plan to treat me. They cried along with me and we all settled few minutes later.
Then I called my brothers -- first tried to call my eldest, as he has been like my father, in my dad's absence. Couldn't get him; then called my brother at Harvard, who understands this type of cellular disease from a biology / physiology point of view.
Then I had to make the most difficult phone call -- to my mother, who had returned from India only a few days back. She was expecting to spend couple of weeks with my family in a happier circumstances, as she had witnessed the worst of things last year as I was recovering. I let her cry her emotions out and once she settled, she began to formulate plans in her mind as to how to help.
Thanks to my children, wife, my mother and brothers / family that I was able to control my emotions and begin to think logically and objectively.
Managed to read through the email...by the end tears flowing like a waterfall, and semi-paralyzed, called my wife at work and asked her to come home. Kids were home by then and knew something was not right with daddy. With all the emotions flowing, I let them know Leukemia is back, and that my doctor has a solid plan to treat me. They cried along with me and we all settled few minutes later.
Then I called my brothers -- first tried to call my eldest, as he has been like my father, in my dad's absence. Couldn't get him; then called my brother at Harvard, who understands this type of cellular disease from a biology / physiology point of view.
Then I had to make the most difficult phone call -- to my mother, who had returned from India only a few days back. She was expecting to spend couple of weeks with my family in a happier circumstances, as she had witnessed the worst of things last year as I was recovering. I let her cry her emotions out and once she settled, she began to formulate plans in her mind as to how to help.
Thanks to my children, wife, my mother and brothers / family that I was able to control my emotions and begin to think logically and objectively.
March 13, 2014
I was eager to have the biopsy done with a hope of having the results on the same day. With the help of our neighbors willing to drop my little girl at her school, my wife and I headed for an 8am appointment at the Simon Cancer Center.
By about 10am, the procedure was complete.
Unlike previous biopsies, this one was quite painful. He had to take samples from two different places in the bone and kept saying the bone is really strong. After gaining orientation, I decided to head back home and work.
Unlike previous biopsies, this one was quite painful. He had to take samples from two different places in the bone and kept saying the bone is really strong. After gaining orientation, I decided to head back home and work.
March 10, 2014
At the advise of my oncologist, I went in for a comprehensive blood test. After a few hours, I got an email from the doctor's office saying -- "Dr. Sayar suggests we do a bone-marrow-biopsy".
I didn't think much of it and was expecting the biopsy to show that I am still in remission.
I didn't think much of it and was expecting the biopsy to show that I am still in remission.
Subscribe to:
Posts (Atom)