Jiggity Jig

Home again

Been home since Saturday.  Oh my dear god!

The ride home home after nearly 1 1/2 months in the hospital...hard to describe

The car wash was beautiful.  Beautiful.

The Mexican market was full.  Joyful

I just watched the low and high tide of cars in the Safeway parking lot while Carol shopped.

Happy people, sad people.  People.

Sitting on the couch watching my feet

Snoozing...catching up on lots of hospital nights with only 2 hours sleep.

I'm getting better.  And it'll take some time to get my strength back.

But truly...

each moment is new.

each moment is a joy.

no future

no past

now is damn beautiful

even with fat steroid filled feet...like little manatees.

Back to the spa......

Well...I'm back in the hospital for a bit.  They're trying to get my GVHD (graft versus host disease) under control.  They know what to do, and it's pretty high tech.  They're using a photopheresis machine to take blood out of me, separate my cells, add a light sensitive drug, then put them under UV light, and put them back into me.  A little like dialysis.  They don't really know just how this works, but it does.  It kills a few cells, and calms down the rest.  On top of a pretty big rash, the new cells are hitting my liver and my GI tract.  And this machine works on it all.  Fingers crossed...but the docs are totally confident in this procedure.

I just want you to know wazzup.  At least I had nearly a week at home.  Keep loving each other.......

xoxoxoxoxoxo

Lee

I'm vertical

I've been sitting here letting my Mac warm my groin for the last hour.

I  just don't know what to say yet.

Great Love to All

From Poo to Pooyah!

The moment of truth happened yesterday. Lee had a rash from shoulders to toes. Little tiny red bumps crowding his skin. They didn't hurt or itch, they were just there. He felt nauseous, unable to eat. His head pounded. He had a low grade fever. That's the poo part. Then the doc came in, looked at the rash, considered the nausea, headache and fever...and smiled. Then he said the words we had fantasized about hearing since this saga began last May. Words we didn't know existed before last spring. And there were only five of them, "Your stem cells are grafting." Translation: The stem cells have found a happy home in your bone marrow, noticed the lack of white blood cells and decided to get down to business filling that niche. Translation: Your new immune system is growing, which is why you feel like poo right now, but you will feel better soon. From "poo" to "pooyah!!" in five little words.

I wanted to yelp and jump up and down, but I refrained because I could see that Lee still felt like the poo part, even though it all meant he was getting better. So my voice just got very high and I said, several times, "Oh my god, sweetie, it's working!"

It's happening earlier than they expected, but then Lee is always early. It also means he may be coming home this coming week...pooyah!!! Which also means I had to throw myself into happy panicky phone calls to contractors trying to move up the dates for things like carpet and upholstery cleaning, etc. We'll be down to the wire, and everything will work out just fine (which is somewhat my m.o., I like the adrenalin).

So, keep those lovey thoughts and vibes coming because they have been and still are a major part of this journey (and Lee still feels like, well ya know...).

I or we will announce the happy day.

We love you and thank you!!!

Feel free to yelp.

One more thing - and this should have been posted before the one below, but time is not linear these days - the transplant itself.

Lee was stretched out on the bed, hooked up and breathing deeply when the stem cells were brought in, looking a lot like muddy blood. Lee asked if he could say hello to his new immune system. He held the bag to his chest and quietly said, "Thank you" as tears welled in his eyes. I handed him a Kleenex, then took one for myself and one for his Mom. It hit all of us at once: this was not just another day on this journey, this was the turning point, the Rubicon, zero hour. The nurses carried on, allowing us our moment. Then Lee handed them the bag, they hung it, connected it to him and let it flow. He closed his eyes, folded his hands across his chest and gave himself over to this amazing gift, rolling out the red carpet, as his oncologist put it, welcoming the life giving liquid into his body. Della and I stood silently watching, breathing with him. The two nurses, covered in blue gowns, blue gloves and yellow masks began their active monitoring, moving around each other and Lee in a very quiet, well choreographed dance of vigilance. Checking vitals, recording every number, checking again, talking softly. All the while, Lee lay peacefully, tears flowing occasionally. Within 30 minutes, 7 million stem cells had moved into their new home. The nurses kept up their gentle, rhythmic vigil for another 2 hours.

Then it was done. The world as we had known it for the past 4 months had changed. We were looking in a different direction and it was somehow even more surreal and unbelievable. It was scarier and more hopeful at the same time. Maybe that's the nature of miracles. Lee looked more at peace than I had ever seen him.

There is birth and there is death. Then there is the second chance offered up freely by a total stranger whose sole motivation was knowing that his life blood could become yours.

The only question remaining is, how do you top that?

xo,

C

p.s. Throughout the day, nurses would stop by and wish him a Happy Birthday.

Tales From the Other Side - or Feeling Like Poo

It's Carol here, sitting in for Superman, whose not feeling so super right now. They said this would happen, so really, he's right on track, which I understand is little comfort when you're feeling like complete poo. I've had to wear a mask for the past few days, but today I had to gown up and wear gloves as well. Oh yeah, it's the 'procedural look', very sexy. So, they think Lee may have an infection of some kind, again fully expected. Actually, they want this to happen because it can have the effect of jump starting his new immune system. So, Mr. Lee is doing everything he's supposed to be doing right now...including feeling like complete poo. Hopefully, this will last just a couple more days and he'll be craving mac 'n cheese in no time (sorry, sweetie, please don't york). So, let's all just keep reminding him that this is temporary. Say it with us, Lee, "This is temporary." Whose a good boy!

Cheers and huge hugs to all of you for sending your love and support. It means the world to us, literally.

xoxoxo,

Carol

Yup Yup Yup

Today's the day.

It's a beautiful sunny morning.

Music's good.

Soaked in light.

I feel great.

The cells arrive in Denver at about 2:00 this afternoon.

The lab does some stem cell boogie tests.

They put 'em in me sometime between 3:00 and 4:00.

The team watches me like a bunch of mother meerkats.

Let the healing begin.