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Concerned Citizen and a Serial Entrepreneur wrapped in a progressive democratic soul longing for us all to get along.

Saturday, August 6, 2011

Today is Friday, August 5

Ready or not, Friday would have her due. I fretted about what to wear, how my hair wouldn't cooperate and finally, I came downstairs to scrambled eggs & coffee that Tracy had prepared. My honey put his nervous tension to work and we began our day together.

Rio Del Mar had been engulfed in fog but as we crested the hill, the temperature rose and the sun greeted us. What a wonderful surprise! Milpitas was first stop. T took photos of the exterior while I went inside and saw Ed & Zahra & met Ben, 13 months old today. He's sooo cute! Their home is ready to go whenever their new home is complete. We discussed putting their home on the market while they're in it and I'll do some research in order to determine what's best. Showings would be tough with a baby & dog and it all depends on how quickly that market moves.

So, perfect timing; we left for Stanford. Since we're not familiar with the new fly overs for 237; I entered Stanford into the GPS. There were 5 entries and I randomly chose one. My mistake. It sent us, contrary to my intuition, across town to El Camino Hospital (there's a Lucille Packard wing apparently). So, luckily, we had time and arrived on time for T's labs.

It was interesting and welcoming, since we hadn't been there for quite awhile. We greeted nurses we knew and T was easily taken care of. On to Bruno's clinic and they also were almost punctual. The Resident came in first... never did catch her name. She did her work up and I asked some pointed questions which she deferred to Bruno. I was slightly surprised & a little worried when Bruno, Janell & the resident entered. Bruno reiterated a few questions about T's status and then, began to dissemble... they really don't know what to do about T. We saw more of a humanity in Bruno's persona. T hasn't reacted as textbook to all the chemo. He has been more sensitive and had severe reactions and taken much longer to recover. It's been frustrating for the medical team and frightening for us. Reality is T's neutraphil counts aren't high enough for him to tolerate chemo right now. Bruno actually said that given what we know now, he probably wouldn't have been so forceful with treatment- possibly a gentler dosage would have been warranted and tolerated much more easily by T. Hindsight is 20/20 but then, who knows if T would have had the same result? It's science after all and we're all human. Anyway, Bruno posed the fact that even when T's counts recover and he's able to tolerate the chemo; T may be unwilling to put himself through that horror again. The fact is the outcome is also unclear at this point... He could go through all the pain and suffering again and ultimately, NOT be cured, remains part of the equation. I think we were both dumbfounded. I had to ask Bruno to repeat his explanation again because I didn't get it. He said that the fact that T had had more sensitivity and longer recovery times, probably applied to the leukemic cells also...but there was no way to be sure. In short, T has a lot of thinking to do. We have another appointment on Sept. 2nd to see where T's counts are and whether he's willing to undergo the next phase. That phase typically takes 2 months but Bruno says T would probably take 4-5 months and would be just as severe. So, it could potentially kill him if T's body has been ravaged too severely. Bruno also said there could be a chemo light version that Bruno would devise and that could do the trick. It's all a mystery... what to do? I asked Bruno what he would do? He said he didn't know. T has time and must build back up so, we'll see. We emerged from the clinic, slightly bruised and in a fog. While we were scheduling the next appointment, Janell suggested that T have his PICC line removed. Since it's one more way to get an infection and wasn't needed for awhile; why not remove it? After 24 hours, T would be able to take a bath or take a swim without fear of deadly infection. So, we went back up to the ITA and had his PICC line removed...if T elects to continue treatment, a PICC line will be needed again and easily re-introduced.

We found our way back off campus, missing the Subway turn.... I admit I was in a fog... Jayne assisted in finding the Cupertino Subway closest to the Apple campus and we stopped for lunch. T wanted his All Meat Combo with a rootbeer. Then, Jayne assisted me in the choice & my purchase of the adorable wireless keyboard for my iPad at the Apple store. There was a portable, fold up version that T pointed out could easily collapse while I was typing in bed. What would I do without T's wise counsel? Oh yeah, T decided to come in to the campus store and I was so glad. The little normal everyday things that he's been denied, he's reclaiming. I do believe T is back into living as normally as he can in the interim. I believe his neutraphil count will recover and then, I will honor his choice to continue the treatment or not... It is T's choice and I will love and support him either way... that's all that I can do.

Please keep those loving supporting white light streaming beams incoming...


  1. Wow... Big day... You both have the courage of saints... one day at a time I guess.. all my love and prayers for you.. I think and pray for you every day T. may the white light circle you and break you out of this undeserving evil. Hugs and kisses to you both God Bless. Love Di

  2. just read your blog i think of you both all the time thank you both for giving all of us the strength and hope we all see and feel from you both of you i pray for T and for u Annie every day we are there for you anytime and love u both love you mikey