Eventful Dr.’s visit today

Goodbye, catheter (next Thursday!)

Found out today that we only have to make one trip into NY starting next week.  Thursdays.  That is huge.  Also asked about getting my port out and they said that could be done next Thursday. Have to start getting stuck in the arm again but good trade off from all the cleaning and maintenance that goes into having a tube thru your chest down into your artery that has three plastic tentacles on it.  Pain for sleep , the shower, playing with Leela etc.  Will be good to have it out.

Blood levels were 8.4 Red, 2.5 White, and 107 platelets.  Steady but unspectacular.

Had a complimentary reflexology session last night from an absolutely sublime practitioner, Donna Lightfoot (contact me for her phone#, she’s a miracle worker!).  She met Leela and Lisa at the library over the summer and offered to do a free session.  Incredible.  I have had this session and a massage session from Ginny Flint (http://www.sacredriverhealing.org/bodywork.htm)  last week, also complimentary.  They have to be the most pure, soulful and talented body workers in the area, and the just gravitated towards us with open hearts.  I recommend them to everyone.  Really touches the heart deeply.  Thanks to you both.



tough day filled with angels

The day started with Lisa coming up the stairs and proclaiming “game on.”  Leela had come down with a runny nose filled with green snot.  The fear we had been dodging for my month back from the hospital.  This is bad.  This means that we need to separate her from me.  Now, if her mother has it too then she has to be removed from being around me too.  Which is why we were fearing it so much.  What do we do at that point?  Well, Aunt Ruth was already over giving Lisa a chance to go to an hour yoga class this morning.  Planned a few days ago.  So she became part of central planning.  I call Damon and checked if he could take Leela.  To my amazement he didn’t flinch.  As long as you need she can be with us, he said.  What a great friend he is.  So we packed Leela up with Aunt Ruth and she is back at camp Taney tonight.  Charming Corinne, Ellie and Fiona and vice versa.  Thank you Lord for making the Taney’s!

Next Shawn came over and hit the cleanliness hard.  She has the most calm demeanor as she goes after the house and turns it into a sparkling gem.  She is way better than a service you hire because the place gets cleaner, AND there are all these Mudita type touches left behind.  Spiritual healing touches that add to our well-being.  She is a gem and Lisa and I are so lucky to have her in our lives.

Then MA came over and cooked the four of us a squash, kale and black bean meal that was Matt-like.  Splendid.  Thank you MA.

Lisa has been loading up on Wellness formula and Vitamin C and we are hoping for the best tomorrow for our visit to Sloan Kettering.

Thank you for your help, angels.  The day turned out way different than it started.



P.S.  Wanted to share an incident Lisa and I witnessed at Sloan on Thursday.  About a 70 year old guy with a bandage over his nose area came in to the dental, Maxilofacial area where we were waiting.  During the time we waited he went in and came out with a new nose.  A NEW NOSE!  He remarked something about how it felt great to have a nose after all this time and then just walked jauntily but gingerly out the elevator area into the world.  The guy got a new nose.  How good must that feel.  And it all seemed so matter of fact.  Incredible.

Lisa’s B-day today

Big Day today.  Lisa is a year older.  Leela and her are at Target shopping right now.  No big plans as you probably guessed.  Some type of an outing later today.  Great weather in Nyack the last week.  A real gift.  Also a Jupiter sighting next to the moon last night.  That was kind of cool.

Health wise hanging in there.  Trying to conjure up some energy.   The Dr. told me yesterday not to take naps during the day anymore because it was ruining my night sleep.  So no naps yesterday and last nights sleep was pretty good.  So I will stick with that.  Liked my naps though.

50 days since the transplant.   Hard to believe its been that long.  Thanks again everyone for your intense caring through the whole process.  We love you all and will not forget any of it..



Perspectives on the mountain

Waiting in Sloan’s waiting room for results from blood tests.  Packed room for Monday morning.  Thought I would take the time to post MA’s version of the mountain magic that occurred last Tuesday.  Lot more detail than mine.  Thank you MA for posting.

Go tell it on the mountain

Tuesday- I spent the day with Leela and offered Tom a change of scene if he felt up to a ride in the afternoon.  Tom called at 1 and Leela popped up like a piece of toast from the ‘pink bed’ where I was trying to put her down for a nap.  Like Goldilocks, Leela bounces from bed to bed at naptime till she finds the one that is just right.  She said ‘blue bed’ and off we went to try and nap in another room.  I tucked her in, read her ‘ The Song of the Day Birds and the Night Birds’ 3 or 30 times before she pointed to the door and said ‘close the door.’  Obediently, as always with anyone who carries 1/10th of my body weight I closed the door and went downstairs to mop my floors.   About an hour later she called down “Cuckoo, come up here” – I did as commanded and she popped up again and said “get up now” and so we put on our shoes and went to pick up Daddy.

Tom–you had no spark that day; when I talked to you it was like dropping pennies in a well.  As we drove up the parkway I remembered what it was like to have no spark, I wanted to take you someplace that might shift your perspective so I took you up Perkins Drive at Bear Mountain.  It is a holy place–my granddaughter bursts into spontaneous choruses of America the Beautiful when we drive up–and  over the years I have taken friends from other states whose visions of New York are the 5 boroughs, Long Island and Buffalo.  They are ready to drop to their knees as they look over the Hudson River to the mountains beyond, shifting from greens to gray to violet with the ghost of Manhattan more a mirage than an image in the far distance.

We drove up the long drive and parked the car.  I asked if you felt up for a walk out on the rocks (from the lot you can not see much more than bald rock, grasses and trees), you said yes–but your eyes still reflected the flat black, pinpoint pupils of someone in the dark place.  I took Leela’s hand as we stepped out to the rock and it was only when we had walked out to the first ledge that the true magnificence of the valley below was visible.  I waited for your breath of ‘ah’, for your pupils to open, for the shadow to move, but before the magic happened we saw the backs of 2 women and one man on the ledge below us.  They spun around to face us and called out in Louis Armstrong, fire and brimstone voices “Raise up your arms, raise them up” and in shock we did, even Leela.  There was man carrying a long twisted ram’s horn  with flags hanging off it and 2 colorfully dressed women waving thick, heavy, well thumbed bibles in our direction.   I passed a sidelong glance your way wanting to follow your lead, I am usually game for any experience but this day was about you.  You stood there arms raised as though you were being held up at gunpoint; your eyes closed as they yelled out in earthshaking voices.

“There are no coincidences in the world, we are here to heal YOU;” and they pointed their hands at you Tom, right at you. “The cancer will leave your body,” the woman in bright yellow called pointing her bible filled hand at you.  The man blew the horn – echoing blasts.  “Go to your doctor tomorrow and he will tell you that you are healed.” (I was briefly and selfishly disappointed because I had a kick ass case of poison ivy and she didn’t mention me at all.)  She turned to man and called out; ‘Read us some scripture” and he obliged with words that blew off in the wind.

There were people on the rocks behind us who could not see the strange group below us–they only saw us with our arms raised; you, by then, with tears streaming down your face, eyes shut tight; and me misty with empathy.  One man caught my eye and raised his brows in wonder.  Leela, little arms raised kept her composure as the bystanders heard the voices praising Jesus and the bellowing of the ram’s horn, audible, yet invisible.  The 3 then climbed up the rocks to you, one waving a bottle of oil in your face wanting to anoint you the as the others reached over to lay hands on you.  We begged them to please not touch you; the man said to the two women, “They don’t understand this is Jesus healing” while the yellow woman asked, “Do you got to church?”   “This is church.” was your reply.  “You will see your little girl grow up to be a woman” she said as the one with the oil broke role as healer for a minute and said as she held out the bottle, “see, it’s just olive oil.”  You thanked them and sent them on their way.

As they receded you turned to me and said “Nice set up M.A.” – I said “Tom, you can’t make stuff like this up.”  You said, “It was olive oil, Bertolli, not even organic,” and we both laughed, self consciously, like we were caught in a shared dream.  “Holy Bertolli.”  We were pretty quiet on the way home.

There was a miracle on the mountain for me that day, many miracles in fact.  To be standing in September’s sunlit splendor on a mountaintop knowing that what I was looking at that moment is what will endure–not our troubles which will pass as surely as we will pass.  It is the earth that will remain, whole and green and beautiful.

To be there with you Tom–you, who could easily not be there except for the many other miracles that diagnosed and saved you.  For the courage of the three believers testifying their absolute faith in their vision of the divine on your behalf; it doesn’t matter what we believe, only that we do believe.  How do we explain their timing, coincidence, the divine plan, chaos or chance?  How did they know you were sick?  There are a lot of skinny bald guys on earth.  (Ok, it’s not cancer.  It’s aplastic anemia- who knows what that is in the general public?  Aplastic anemia sounds like something a 10 year old in 1964 would have on their Christmas list along with a Slinky.)  And Tom, what did the Dr. say when you went the next day?

I will push a button on this silver box sitting on the table in front of me and these words will pass through the ether and wind up on little boxes in front of you and other people.

The sun is coming up. Everything is a miracle.

–Mary Alice Hohenberger, September 19, 2010

Good news at the Dr. today and miracle on Bear Mountain

Got the results of the marrow comparison back today and it turns out that all the marrow is Joanne’s.  Which is a good thing.  It’s a test they do to see if any of mine stuck around, which it’s not supposed to.  So that is a great thing.  Thank you again Joanne for a great marrow transition!!!  Other test are around where they are supposed to be.  Red 8.5,  White 2.5, neutrophils 2.2, Platelets 12o.  So good so far.  Dr.s are pleased.  Except Dr. Castro, who when I said I had lost some weight he said , “Well you were a little overweight before” to which I replied, “Well so are you.”  don’t know where it came from.  But he looked at Lisa and said I was a little defensive.  We are getting pretty familiar (I hope).  Funny.

up on bear mtn

Had a nice visit from Aunt Ruth yesterday, and a nice trip to Harriman State Park in the car with Mary Alice Tuesday.  When Leela, MA, and I got to the summit of Perkins Rd. overlook, four evangelists descended upon us and did an impromptu healing. Praise Jesus, Throw your hands in the air, the whole nine yards.  It was incredible.  I asked MA later (cause I was crying and into it) if Leela had her hands in the air and she said one, the other was holding her hand.  Whole thing lasted 4 minutes.  Horn blowing.  Coming within an inch of getting olive oil poured over my head.  Classic, can’t make it up stuff.

Here we are after the healing.



Two weeks out of the hospital

Two weeks out and doing pretty well.  Key progress is getting both my sneakers on to walk around effectively. Had and outing Friday to a music show in Nyack spent 10 minutes- wore mask and gloves.  Was great to be out.  As well as numerous trips to the Hook Mountain Park in Nyack. A beautiful area on the Hudson River for hiking and chilling.  We walk short stretches for now.

Weather turning.  Great day yesterday.  Lisa woke me up at 6:30 this am to see this amazing sunrise over the Hudson. All orange and blue vividness.  2 minutes later it was gone with a white sheet covering it like an etch a scetch.  Fleeting.

Leela is an eating and talking machine.  Cute as can be imagined.  Lisa got a nice haircut and looks extra beautiful.

So doing ok.

Thanks for all the support.



Small steps

Got sneakers on for the first time in months.  Still a little snug over my swollen left ankle but good to walk around in them.  Had a visit to Sloan Tuesday and have another Thursday.  Dr Castro our main Dr. back and they talked about analysing the marrow biopsy so that is something to look forward to.

We sigh a lot.  Leela is a treasure and without her we can’t imagine what things would be like.  We are in a routine sanctioned by my energy levels and the rules of germ avoidance.  Days consist of taking meds, short forays up and down stairs, meals, going from couch to loveseat etc.   In the midst of this Leela is all energy, illustrating how little I have.  amazing and heartbreaking at the same time.  And then there is Lisa trying to do all roles at once.  Impossible.  Our to do list grows and grows.  But when does she stop parenting and start accounting…or doing her day job.  This really has been getting me down lately.  Even as I heal and get slowly stronger.  I can make my own sandwich now.  Great.  But it is so incremental that it gets so frustrating.  This is why I am not posting so much.  I don’t want to write stuff like this.  But this is my life right now.  Trying to get a handle on it.

Will try to post after tomorrows visit to the clinic.

Stay positive 🙂



Back to posting

Happy Saturday morning!  What a week.  Three visits to the clinic at Sloan, M,W, F.  Clinic is code word for all the things that the hospital offers with out the room itself.  So back to waiting rooms, estimated wait times, uncomfortable chairs etc.  This Friday’s clinic was especially eventful.  Had a shot to get the whites juiced back up (they had fallen to 2.5 range- fairly normal for this to happen), a bone marrow biopsy , where they go in through my hipbone to see how the marrow is coming along.  Joanne can appreciate this, she had a virtual harvest of them on transplant day.  Also for the second straight clinic my fluids were too low so the hooked me to the drip for three hours (the boredom kicks in big).  But all in all, a successful week.  I am where i am supposed to be at this point so I’ll just keep gaining strength and moving on.

Big game in the Kelley house today.  UConn vs Michigan.  Trying to convince Lisa that it’s not right to rout against Little old UConn against such a monster opponent but her Michigan roots are digging in.  Should be fun.  When I went to UConn the big game was Umass and Yale. Times change.

Looking forward to weather turning toward fall.  This last week made it all but impossible to enjoy outdoors as my energy was Zonked then 95 degrees was not going to help,  We are getting there.

Special thanks to Rita for watching Leela twice this week and Mom and Dad for watching her on Wed. As amazing a kid as she is she is also an absolute handful and 8 hour day with her is a FULL day.  So thank you so much for that. Lisa is constantly trying to get the Leela sitting settled but with little luck so far.

Great posts still coming in.  Vining, you are legend.  And Vern and Sandi, Great to hear from you.   Thanks for the calls others, although can’t return them all.