And What Followed...

Tuesday, May 2, 2006

Chances of survival less than 30% - Come to the Edge

Thanks to everyone who came to the Happy Hour/Love Fest at the Culver Hotel last night! I had more Maraschino cherries than Liza Minnelli has had… hangovers. Along with the hugs and hand squeezing, there were many questions about the details of exactly what was happening. Well, if you really want to know…

I saw my oncologist today for prep and to review and confirm my treatment. He said I would most likely be going into the marrow transplant procedure in 6 to 8 weeks. My chances of survival are less than 30%. He did his best to sound encouraging
about the partial match after going over the scans with me.

The latest scans that were "bad" showed that a third tumor had shown up in the last six weeks. Of the two tumors that were already identified in December, one had since increased in size by 10%. The other by 30%. This tumor is already the size of a
plum. Also, I have diffuse large B-Cell Lymphoma. "Diffuse" means that there is a heavy sprinkling… sort of like Parmesan cheese… of bad cells scattered in my upper chest area. This loose net of neoplasm is expanding at an alarming rate. This explains the urgency and gravity of the situation.

I am scheduled for surgery May 3, Wednesday morning at City of Hope to implant a Hickman catheter. This is medical tubing that is inserted into the jugular vein. The tubing leads away, puncturing the skin, and splays out from my upper chest. This is
used for direct infusion of the chemotherapy as well as medications and nutrition. I will arrive at the hospital at 8:30am and will be "on the table" at 11:45am. The procedure takes less than an hour, followed by an hour or two in recovery.

As soon as the anesthesia begins to wear off, I will be wheeled out of post-op, straight through admissions and immediately start the 4 straight days of non-stop, 24-hour intense chemotherapy called R-ICE. (A potent cocktail of Rituximab, Ifosamide, Caboplatnum and Etopisode) This is the part where the laser light show begins and I start hallucinating about smurfs. This is also the part where my blood counts will drop and I will be very vulnerable to germies and bugs. If things go well, after 4 days I will go home for approximately two weeks to recover. I will most likely be stuck in bed feeling very crabby because… well…because I'll be stuck in bed!

After two weeks, just when I'll be getting my wits about me and saying, "Where am I?" they will admit me AGAIN for a second round of 4 straight days of non-stop 24-hour R-ICE chemo. Another week or two of recovery will be followed by scans. What
happens next will depend on what the scans say.

In terms of visits, I would call the hospital first before driving all the way up to Duarte. My condition may change hour by hour. People who are sniffly, coughing, or running a temperature, will not be allowed into the building. Infant children are not
allowed in the building. Visitors may be required to wear mask, gloves and possibly protective gowns. All visitors are required to wash their hands thoroughly before entering the room. Also, City of Hope recommends keeping visitations short. No "outside" food will be allowed.

This schedule, of course, is tentative. Things change day-by-day, hour-by-hour. Everything depends on how well I tolerate the chemo and how well I respond to it.

We are still desperately seeking a miracle match. Finding a better match increases my chances of survival. We have less than two weeks left to sign up as many Filipinos on the registry as possible. We need lots of help right now: People to help with
making phone calls, follow-up and fundraising. If you can spare some time, some talent or some skill, even if it's just a little bit, PLEASE contact my sister Jocelyn.

"Are you going to be alright?" I get this question a lot and the answer is "Nobody knows". I don't know. I wish I knew. I wish I had the answers. Only God knows why this is happening and what will come of it. Truth is, none of us truly knows if we are
going to be "alright" six weeks from now. We just take it for granted. Truth is, one day, some day you and I will leave this earth. We are at once invincible spirits and mortal beings. Once you recognize that in every soul you meet, you will realize the significance of every moment in your life and what love truly means.

"Are you going to be alright?" : All I know is that I'm going to work as hard as I can to be "alright". And no matter what happens, I'll at the very least know that I did… we did… our very best.

Much love,

- - - - - - - - - -

Come to the Edge
by Christopher Logue

Come to the edge.

We might fall.

Come to the edge.

It's too high!

Come to the edge.

And they came,

and she pushed,

And they flew.

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