Beam Me Up

Yesterday was a beautiful day in SF, reminiscent of that even more magnificent day in Calistoga, exactly 3 years ago.  We have such happy, peaceful memories of that celebration.  We've obviously had more than our share of challenges since then.  But, it is the memories like those of our wedding, the great joy we get now from our little guy, the solace of our family and friends, and the anticipation of happy and untroubled times once again that gets us to tomorrow.

On Tuesday afternoon we met with the radiation oncologist at UCSF.  They are going to go with a somewhat unconventional and aggressive approach, giving me a more intense dose over a shorter period of time (5 days).  The beams will be highly targeted, but they have to consider all the other organs, tissues, etc that they will pass through to get to that nasty mediastinal mass.  So they are calculating/testing the best number and strength of beams to use.  Lots of algorithms and computerized computing :)  Fancy stuff.  The start date is not yet determined because they are going through the insurance approval process.  So now, I'm....just....waiting.....

Last night Kathy went back to NY and will return when needed.  Leah and Freddy arrive tonight and Kerry tomorrow!

On a money-saving note, did you know that you can recycle your old iPhones (and other Apple equipment) in exchange for Apple gift cards?  I did not know until I heard about it on the news yesterday!  I am sending in my old 3G (sorry Nicholas!) for a $55 card, redeemable at the Apple store!

Sidelined

The day started with another injury.  Nicholas accidentally scratched my cornea during bottle time this morning and WOW was it painful.  After indulging in a "I'm-going-into-the-hospital-for-a-month" mani & pedi, I headed over to Urgent Care to get it checked out (btw yes, it is quite difficult getting a mani when you are wiping tears from your eye every couple of minutes).  The doctor confirmed a scratch right in the center of my eye and prescribed some antibiotic drops.  By early afternoon, the eye was already much less painful and on the mend.  Thankfully, Jonathan was able to take the day off from his finance job and step into his chauffer shoes!

During the morning, I also received a call from my doctor who had reviewed my latest CTscan from Thursday.  He reported that the mediastinal mass and several other nodes had actually grown over the last few weeks.  This is not good when heading into a transplant.  While it's possible to have a successful outcome going in with some disease, it is very ominous if the disease is actually growing.  So, the plan is to now have some localized radiation prior to transplant.  This will have an acute diminishing effect on these areas.  It will be administered on an outpatient basis; meaning, my mani/pedi turned into a mere Monday morning indulgence.

Tomorrow I'll meet with a radiation oncologist and will know more then about the revised timeline.  But over the course of the last several months I've learned that a timeline is really only an abstract representation of key events.  While it is often arranged chronologically, any references to dates, times, places, people, colors, puzzles, four wheel drive, duck sauce, tightropes, kilts, queso, cowhide, or violins are, at most, placeholders.  Ironically, a timeline (aka agenda or appointment), even when printed out on a piece of paper, is by no means indicative of the actual arrangement of events in time.

While I've grown to accept a day-by-day mentality with this disease, this morning I felt the ultimate frustration.  To be so close to transplant, logistically and emotionally, and to then face more unknown and more waiting...it was a bummer.

On a positive note, we picked up Nana at the airport this afternoon and had lunch at Roam (new place on Fillmore, people!).  Then we came home to play with Nicholas!

My new tie-dye is rad!

Carb Loading

We threw caution to the wind this morning and went out for brunch.  Since I'll be restricted to hospital food for a month, followed by homemade food only for some time, I declared earlier this week that I wanted to exclusively eat/take out until I am admitted!  This morning we went to Zazie in Cole Valley.  We accidentally arrived an hour before they opened, so we went to a nearby playground and Nicholas had the place to himself!  It was worth the wait, this was food to write home about.

French Toast Tahiti

 stuffed with caramelized bananas and walnuts

Mexican Scrambled Eggs

with chorizo, white cheddar, roasted peppers and salsa 

Nicholas enjoying a little bit of everything!

Mr. Social waving at the neighbors

Go Blue!

This used to be a white frame.  But, with fairly little effort and a couple of vendibles from Martha Stewart Crafts (glitter) and Plaid Enterprises, Inc. (Mod Podge), it isn't white any more.  Sweet smiling baby + over-the-top sparkle = happiness.  I think the nurses will like it too.

A Very Literal Labor Day Weekend

Today we had a meeting with the doctor and nurse coordinator to review the details of the transplant and give consent.  Jonathan and I were there and Kathy skyped in.  I'll be admitted on August 28th after having some final tests and a physical that morning to make sure I don't have any (other) kinds of illness.  As soon as I'm admitted (or, I should say on the day I'm admitted), I'll have a Hickman line placed.  I'll be under conscious sedation, which is great.  The next morning I'll begin the first of 5 days of Flu/Mel chemotherapy.  It's referred to as a "mini" conditioning because it is not completely myeloablative, so the side effects shouldn't be terrible.

Leah will begin receiving Neupogen shots on August 31st and her stem cells will be harvested on September 4th.  I'll then receive her stem cells on September 5th.  Remember that date, it will be my new second birthday!  I'll have Leah's DNA.  We could come up with a sensational Dateline story in the future, as we could apparently really complicate a criminal investigation.  My DNA in my blood will match Leah's, but the DNA in the rest of my cells will be the old "stuff."  ha!

Anyway, on to the most important stuff.  Nicholas' divine steri strips from his forehead came off today. Just a little bruise remains.

Before (sporting his new Giants Roos!)

After

Star Spangled Banner

Since I've decided on paper crafting as my recovery-time hobby, I've been spending quite a bit of time in Michael's lately getting stocked up on supplies.  I got inspired when I was there today to do a little something now for Nicholas' big day, which I anticipate I'll be in the hospital for.  

The Playbook

Before

After

Game Plan

I handed off the ball to Leah on Monday.  She stopped in SF on the way back from Maui for her donor evaluation.  During the 6 hour day at UCSF, she had 11 tubes of blood taken, 2 interviews, a chest x-ray, EKG, physical, and vein check.  The nurses in the Pharesis Unit (where they collect the stem cells) were very warm and friendly, and are hopeful that they will be able to use veins in her arms for the collection.  If the veins are too small, she'll have a catheter placed in her neck, but that will be determined on the day of collection.

The short-term game plan, which is always dynamic, is:

August 29th:  Caitlin admission to hospital, begin chemo regimen

August 30th:  Leah and Freddy arrive to SF

August 31st:  Leah begins Neupogen shots to increase her number of white blood cells, 2 per day (usually administered at night, either by Leah herself or a friend:) )

September 5th:  Transplant day

In the last quarter of Monday's game, Nicholas suffered a forehead injury so we spent more time at another hospital in the city (he fell into a door hinge and got a handsome goose egg).  He made a quick recovery and was back in the lineup for playground games the next day.  Proud baby below.