Thursday, March 27, 2014

March 27, 2014

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 !

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 !

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 !

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 !

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 !

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 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 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 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 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 !