Tuesday, July 29, 2014

6 month re-Birthday for Síle/Ode to Síle's minders

Six months ago today---January 29th-- I was lying in a bed at the City of Hope really pretty much out of it. I remember Frank's stem cells arriving in a very unprepossessing plastic bag. And Eoin saying he needed to get a picture. That's it. That's all I remember. Nothing else. In fact my next clear memory is February 14th, Valentine's day. Eoin, Nora, Jim, Ralph and Ainate, allege that during that time I said all kinds of fairly outrageous things. Emphasis on the " allege"! I mean can you imagine my accusing ( apparently in a loud voice) Dr Nakamaura of not telling me how hard the process was going to be? Or referring to him as " that Japanese fellow". Oh dear. 

Today I am celebrating by relishing doing the ordinary things of life and feeling heathy. A long walk with Kofi. Coffee and a pastry at Peets. Meeting Tai Yamada at the Farmers Market. Visiting Nate in his studio. Úna gazing. Quilting. Qi gong class. To name a few. ( Yesterday was a marathon outing to Ikea with fantastic interior designer Kyoko Jackson. If you need design help.....)

Below is a gallery of  the minders I had in Monrovia, all of whom left busy lives to come take care of me. I am incredibly grateful not only to them but also to their loved ones who had to make sacrifices so Sile minding could happen. I will never be able to repay all of them and you who have showered me with love and care throughout this odyssey. When I saw Linda Roman last week, she sagely commented that I was recovering so well in large part because of your love. So true. In Irish we say " Gurbh míle maith agut" which translated  is " a million thanks". And a million thanks is still inadequate. Just know that a day does not pass when I don't reflect on how lucky I am and how wonderfully fantastic you all are.

Not surprisingly Úna is in a lot of these pictures! The photos are in kind of chronological order of the minding schedule

First up was Nora. ( my qi gong friend Kirsten commented that while I was at the City of Hope she had fun figuring out who everyone was but hinted that I might give more info! Good idea Kirsten. So have tried to add more details to each pic)

Nóra and Úna in Ireland. Nora was with me many times but also for the very first week of the so called " conditioning regimen" which allegedly would not be too bad. Not so. Nora and I had planned to go to restaurants and concerts. But instead I was sick as the proverbial dog and Nora tended to me with her usual aplomb, grace and good humour. And in her quiet, kind, thoughtful loving way made my hospital check in and the start of the transplant process infinitely more manageable and less scary.


Frank and grand daughter Grace. Frank was in the States for 3 weeks. In addition to donating my life saving stem cells, he had to endure all kind of pokes, prods, and pricks. And on our testing week a somewhat stroppy kid sister! . He was extremely patient and good humored about it all.

Eoin and who else... Úna ! Eoin impressed the nursing staff mightily by tidying my bed while I was out and about. Nurse Barbara was so amazed that she told all the other nurses who in turn....! And I appreciated it and him too. He also perfected the night time tuck in routine which was of great comfort to me 

Jim, Ralph and....In addition to all the love and care they showered upon me, Jim and Ralph very generously underwriote the not inconsiderable expenses of the transplant process. Ralph did double Síle minding duties as Jim's jury duty dragged on, and on. Ralph perfected hospital speak and was quickly fluent in the ins and outs of stem cell transplants, beeping monitors and loud noises in general! . The staff loved him. Poor Jim when released from jury duty arrived to settle me into our house which was devoid of all mod cons as we say in Ireland. With his usual calm efficient kind way he swiftly made many trips to WalMart amd literally in a matter of hours transformed the house into a fabulous cozy retreat. And he had to deal w/ an hysterical landlady. Not enough space to recount that saga! Xxo


Ainaté and....Because the rest of family was with me so much, Ainaté had to shoulder a lot of the day to day family affairs which she did with her characteristic efficiency, no nonsense approach and good humour. She was as we say in Ireland a real " brick"


Liz Muller with David enjoying my last birthday at Fenton's. Funnily enough ice cream was the only appealing food to me for many weeks. And liz made sure the freezer was well stocked! She also very quickly made herself THE expert on ins and outs of my complicated diet.

Eoin, Sara Murphy, Sarah Fairchild. Go see Sara Murphy's movie Land Ho. Terrific. The Sara's cleaned and scrubbed with great gusto as well as going to the laundromat. Multiple times. And catered to my every whim. Coffee? Of course. Chocolate? What kind? Ice cream ? How much.

Sister in law Hazel  travelled from Dublin and Judy Hoeping from Indianapolis by way of Arizona.  Judy was Hazel's bridesmaid ???? Years ago! Hazel made sure I had my favorite foods many harkening  back to childhood. And braved the LA streets to get me to my dr appointments. Judy introduced us to what became my favorite haunt, the Santa Anita Raceway and regaled us with tales of the horse world.  She had rented a VW convertible which added great class and fun to our operation.
Joanna and Steve Davenport stayed for a whole week. Steve took to the daily cleaning regimen with great gusto. Counters had to be cleaned multiple times per day and every time I saw Steve he was brandishing the 409! Meantime Joanna was tending to my intellectual side by making sure I was comfortable  on the porch while we discussed our favorite books. Our daily walks were wonderful because of Joanna's very keen painterly sense of observation and Steve's amusing commmentary on Southern California's water (mis!) use.

Amy Prentiss. I have no idea what she is doing here. This was on her recent vacation in Edinburgh and London. I was well enough for a fab outing to the Simon Norton Museum when Amy came. Loved that museum and being there with Amy who is not only great fun but an art expert too. Correction: pic was taken at the Oakland Museum at an aviation exhibition!

You have to imagine a photo of Susan Garfin below. She flew down with my sister Maire to make sure the latter actually arrived!  With her wonderful,sense of figuring out exactly what needs to be done,  she oriented Maire to the area-- a not inconsiderable contribution!--- and made sure I felt comfortable driving.  PS thank you David Garfin for snapping this wonderful image of Susan on July 30!




My sister Maire who came all the way from Zambia. And stayed not only in Monrovia but also in Berkeley to help me transition to " ordinary" life. With her wonderfull intuition she quickly tuned into  my needs and  slower pace and adapted accordingly. Kofi, my dog, appreciated her catering to his whims too!


And the following were on THE list. But because Dr Nakamura released me at day 80 instead of 100, they didn't have to come to Monrovia 

Carol Riddell 
Cecily Majerus

Janice Au Young on her tandem with husband Colin. ( getting in shape for Sile minding?)


Adrienne Klein. The daughter of the late Margaret Klein

Old friends Jo Wayles and Alan Steed, now living in Oregon made a detour to visit me on my second day out of the hospital. It was an energizing treat to see them and to be reminded of how precious friends are. 



And Úna gets her own pic. When I was so scared about the prospect of the transplant and crying in Cecchi's office, his wonderful nurse Anne reminded me I was doing  it so I would be around for Úna's birthdays

And finally another pic of Eoin who was the mastermind behind the schedule of coordinating everyone. An amazingly complex task as you can imagine. This pic was taken at the recent wedding of our wonderful friends Colin Bohrer and Steve Ballerini














Wednesday, July 2, 2014

5 months post transplant


June 29th marked the 5 month post transplant point. Dr Cecchi cheerfully remarked that I didn't have to worry about dying anymore! ( I hadn't realised it was something I needed to worry about after I got out of the hospital.) He went on to say that my counts are great and liver function very normal and that he is very happy. And....  I feel normal--- a condition I now realise I have not felt for 2.5 + years. Normal is planning a dinner at a restaurant for my qi gong class. Normal is enjoying long briskish walks. Normal is having a spring to my step and most definitely thinking of the future. Normal is.... Well you get the idea. When Carol R saw me 2 weeks ago, she looked at me quizzically and remarked: " I don't know what is different but I feel as if the real Síle is back".

But I still have intestinal GVH ( graft vs host) which is proving difficult to lick. I am still on damn steroids and have to be careful of what I eat. However, mostly I feel fine and in comparison to what I have had to deal with this is pretty inconsequential. 

In other news. Úna, Nóra and Ainaté are in Ireland basking in the attention of doting cousins, aunts and uncles. They all survived the long flight with only one Úna  meltdown. Eoin was in Provincetown for Colin and Steve's wedding. He is now in NYC visiting the Saras and looking forward to the premiere of Sara Murphy's movie, Land Ho, which opens in the Bay Area on July 11. I move back to Emeryville at the beginning of August. Sister in law, Janet had her 3rd chemo yesterday and got her PHD last Friday!  Doesn't she look great?


Síle and work: Since Dr Nakamura does not want me back in the classroom for at least a year, if at all, I am going to start doing some private tutoring. If you know of anyone who could use me help,  send them my way. Another sign I am feeling normal!

And for those of you who have been feeling Úna deprived.....

Enjoying her cousin Joe

The radiator in Liam and Hazel's is a perfect Úna height 

In Forestville which definitely has dress weather



Colin, Eoin, Steve post wedding. Their caption was " Awkward family portrait"!


Whose hair is growing faster?!