Just got a bit more “interesting”…

Our new view...

As Tom’s last post foreshadowed, things did get more interesting today… This is Lisa posting, as Tom is hooked up to a few too many monitors to type at the moment.

He’s feeling OK, but we have been moved upstairs to the ICU for the duration of his chemo treatment.

This morning, I was in the bathroom with him as he was finishing up his first shower with his chest port and IV attachments… he began to feel faint so a team of nurses and doctors was called in. He made it to the bed fine, and never passed out, but it got him a lot of attention.

An hour or so later another team of doctors and nurses came in. They gave us the news that Tom has a condition called Aortic Stenosis, a narrowing of the aortic valve in his heart. The good news is this will not prevent him from proceeding with the bone marrow transplant scheduled for next week. The bad news is, he will probably need heart surgery of some kind after he recovers.

Since it is the weekend, we still haven’t spoken with a cardiologist who will let us know how severe the aortic stenosis is and what the recommended treatment would be. We hope to see the attending tomorrow to answer some of our questions, and get a full consultation with a cardiologist about it on Monday.

So, needless to say, they want to keep a very close eye on him. So, after getting him all settled in to his room in the BMT unit, I packed everything back up and moved us up to the ICU until transplant day. (Still hoping to get a better room when we go back, maybe this whole event will bump him up a few notches on the waiting list.)

Luckily my mom and dad are coming tonight, so Leela will have family to be with while I camp out here for a few days; don’t like being too far away now.

Hopefully Tom will be feeling up to posting again tomorrow. If not, I will. Thanks everyone for all of your love and support.

// Lisa

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First day of Chemo

I think we're gonna need a bigger port...

Zofran, Heparin, Ondansetron, Benadryl, etc.  These and other meds are in those bags.  Hanging from my IV tree that I drag around the room.  Also Cyclophosphamide (Cytoxan), the Chemo drug.

First day on it went well.  My soul brother John Nelson called me right in the middle of it and got to hear me get a little scattered in my speech.  Emotional too.  A vet of the first Gulf War, Nelse is the guy you want in a foxhole with you. Was great to experience that with him today.

Tomorrow is more of the same with some ATG (horse serum) mixed in. One nurse said “Oh yes, it gets interesting when you take ATG.”  Interesting?  Like Hunter S Thompson interesting, or my wife Lisa when she was pregnant with Leela interesting?  Big difference. We will find out tomorrow.

Side note — The food here is outstanding.  Had talapia, brown rice, and broccoli (and a turkey burger) tonight. Heard so much about not being hungry that I figured I’d eat while I can.

My magical wife Lisa hauled our 30 pound buddha down to the city to add good energy to the room.  She continues to be an amazing goddess even while trying to fill too many roles to mention.  When I am able, I promise her that I will change every diaper of Leela’s from that day on ……. So Lisa, how is the potty training going?

Our rose quartz buddha

Will post tomorrow.  Should be “interesting”

Love,

Tom

I’m In!!!

Hickman PICC line in place, ready to rock and roll.

Checked into the hospital today.  Lisa brought me down this morning.  Had my first surgery of my life when they put the port in my chest (for easier blood and medicine administration).  First time with anesthesia too, kind of enjoyed the fuzzy feeling although its hard to shake it off afterward.

Checked into the little room that I’ll be in for the rest of the summer.  Pretty spartan.  Great bed though. Downstairs waiting for the surgery was on a slab looking bed that was horribly uncomfortable.  Then Lisa and I got into the long term room on the 8th floor and the bed looked pretty much the same.  Until I laid down and it started to move in all kinds of ways like a massage chair.  Not crazy but just enough to make it VERY comfortable.

Want to really thank all the well wishers and people praying and helping our family out in so many ways.  It means so much and just creates such a wave of compassion.  We fully realize that we are not the only ones suffering these days.  Some way more profoundly than us.  But hopefully all the positive energy that is cycling around will help everyone, include those initiating the great vibes.

Have heard the word love used more frequently than ever in the last few weeks.  This is a fantastic thing.  It has a contagious effect.

Love you all,

Tom

Two days til Hospital

Tuesday morning.  Two more days till I go in to MSK (hospital)  for a while.  Pretty surreal.  I was sitting on the shore of the Hudson River yesterday. Gorgeous day, feeling good, and started thinking “Do I really have to go through all this stuff coming up?”  But my blood counts don’t lie and so yes I do have to get a marrow transplant.

Started making adjustments.  Shaving with electric razor (to avoid cuts that won’t clot)  Washing with special soap for my port insertion operation Thursday.  Taking every opportunity to be really close with Leela before I can’t hug her for a while.  She is just pouring on the charm.  Two nights ago she rolled out her new  please routine.  Tilted head down, lower voice “Pllleeeaaassee can I have some more cake cakes?”  Unbelievable.

Had our last men’s circle last night til I get out of the hospital.  What an amazing group of guys.  Been meeting since January every other week.  We have developed a trust and a bond by sharing our challenges and highs and lows.  Everyone became more and more present every time we met.  Lisa and I are so fortunate to have had our circles since we moved to Nyack.

Nice visit by Rachel, Paul, and baby Benny Friday.  Casserole and Be Here Now book much appreciated.  As was the stellar teamwork of Elena, Rita and MA in entertaining Leela on Thursday and Friday.

Also want to thank the True’s for a great scouting report about the transplant experience at Sloan Kettering.  Got a whole lot of great info and motivation about what we are embarking on by highly successful veterans of the process.

Also, yesterday we were graced with the visit of illustrious chef Matt Gaines and his lovely fiance Shawn at our house.  Matt whipped up his famous Polenta dish and the equally tasty kale/chickpea patties.  Everyone who has ever been to a Monte weekend just got a little hungrier reading this.  Thank you Shawn and Matt.

Will try to blog once more before I go in.

Love to all,

Tom

Saturday morning

Woke up early to a beautiful morning, and a beautiful wife. Feeling really good because of the 2 bags of blood and 1 bag of platelets I received yesterday as part of the last prep for next weeks start of festivities. Thursday Lisa and I went down to Sloan Kettering (Which for brevity sake I’ll refer to from now on as MSK – Memorial Sloan Kettering) to get a barrage of tests. They had me doing stairmaster to check my heart and in a see thru box to check lung capacity. Gave a ton of blood samples for various reasons. Felt kind of like Lance Armstrong. Only without any wind or fitness. Things took so long that we had to go back to get the blood yesterday. Got briefed more on what to expect when in the isolation room. Pretty intense. They described it as 6-8 weeks, instead of the 4-6 that we thought. Its a long time to be in one room no matter how you slice it.

Timeline review: Thursday 7/29 Check in to MSK, get “port” installed in my chest. A port is a long lasting device for getting and giving blood and medicine. When you get your arms stuck over and over with needles, it gets harder and harder to do it, so the port is very welcome.

Friday 7/30 Start Chemo to get rid of immune system to prepare for 8/4 Bone Marrow Transplant.

Sat 7/31 Bus transport to Pier 49. Board Boat for Fishing Trip…… Oh no wait, this was from One Flew Over the Cuckoo’s Nest. http://www.youtube.com/watch?v=q84FSPSU_u4

Joking about Saturday, Chemo will last for 4 days, then a rest day on Tuesday, then the transplant of bone marrow from my sister to me on Wed 8/4.

I can have visitors throughout, but won’t be feeling that great at times. Visitors have to wear masks and gloves. I will be reachable on cell and email. The bone marrow usually takes two weeks to “take” to my bones, and then its weeks or months trying to build back up my immune system and not get infections and complications.

Getting great suggestions for things to do while counting the days in MSK. Keep them coming. I will list some of the classics.

I am going to try to post more often as we get into the meat of this journey. Thanks to everyone for their participation and well wishes and love.

Love,
Tom

Schedule for treatment/transplant

My sister was at Sloan Kettering today getting tested for overall health to be my donor.  Everything went smoothly.  Thank you Joanne for stepping up in this huge way.

We also received the schedule that we will be following.

I will go in Thursday of next week (the 29th), start Chemo Friday that will continue for 4 days, then a rest day Tuesday, then the transplant Wednesday (Joanne comes back from Denver to give the transplant early Wednesday).  After that I’ll be in the hospital for 4-6 weeks.  The first two weeks are waiting for the marrow to take and the rest fighting off infections.  After that is what they call the “first hundred days,” which is spent at home but monitored carefully.  No crowds, grocery stores etc.  Just spent trying to get my energy and blood counts up and avoiding germs with a still recovering immune system.

Felt myself having a harder time staying positive as the reality of what I’m about to go through comes clearer.  Lisa and I talked to the social worker at Sloan Kettering about what the rooms are like and how isolated they have to be.  As an example, I asked about bringing food in and she said, “You’re not going to be that interested in food most of the time,” which is easy to translate into “your tongue is going to taste like aluminum foil.”  I know many people have gone through a lot worse, but I haven’t.  And I really have to coach myself that its OK to feel like crap sometimes about this.  Not “why me” but just plain old “This REALLY Sucks.

On the brighter side, GREAT drumming circle Saturday at Memorial Park.   The Glenn, Eric and James trio was rockin and all the families and kids had a blast.

And of course Leela is keeping our spirits up with her world class adorability.

Love,

Tom

Official news on donor. Reality sets in. Whole fish soup update.

So we got word from Sloan Kettering yesterday at 6pm that indeed my sister is a donor match.  Kind of a stressful two days waiting for that.  She is coming in for tests this Tuesday. Then I go in a few days later to start the prep for the transplant.  The reality has sunk in now for Lisa and I that this is happening.

Before, part of us could delude ourselves that this was some kind of cosmic drill that we were involved with.  Just explaining to people what the disorder was and what the possible timelines were and get thru day to day.  But when I am going into the hospital in less than a week (maybe for as long as 5-8 weeks) thinking changes from abstract to real.  I don’t really know what to expect.  I know that I can’t hold Leela because of the potential for germs with my wiped out immune system.  That is heartbreaking. Leela must know.  She has been crying the last few days with a deeper level of emotion and commitment. Its adorable and wrenching at the same time.

Trying to enjoy the last few days of “normalcy” for a while.  Have a drumming circle in a few hours down at the park in Nyack that should be great.  MA and Nancy from the Monte macro community have been cooking us fantastic tasty macrobiotic meals the last few days.  Thank you so much.

Lisa as always has been the most amazing partner ever.  My advice for the day is to love your partner deeper and deeper each day.  Don’t wait for a crisis.  Just incrementally open your heart and give your loved ones more of yourself.  It is the best investment on earth.

Oh, and a whole fish soup update.  On the recipe it doesn’t specify how often you should eat it.  So I was powering a cup of it down four days straight (pretty sure I already devoured both eyeballs already) before learning that you only had to have it once a week.  We were cracking up about that one.

Great to read all the posts, keep em coming.

Love,

Tom