Boot camp for the pelvis!

A shortish missive from Síle about Síle. 

I will be discharged from the fabulous Summit Rehab Center on Friday December 2nd. My days are busy. I have mandatory PT for 3 hours a day. Then I have so called bed exercises which I do at least 3 times a day. Add in how long it takes to actually get out of the bed or chair and you get the picture. I have a broken pelvis which will heal on its own but is " bloody painful" if I don't move just right. One week post surgery my elbow is improving nicely. I can now dress myself which is thrilling! (Don't  ask how long it takes). I navigate the Center with my walker and get more proficient every day. The gym is terrific  but when I am there, we are working so hard there is no chit chatting or any such foolishness. We are all too busy concentrating on our exercises . The therapists, nurses , doctors etc are also fab.

Thank you to everyone for all the love and support. I can hear your cheers when I navigate a tricky manouver!  After I return, I'd welcome visitors. 

And now for the good part. Pictures. And the excellent news that Jutta and Greg are now proud parents of Lukas. 

Nóra, Úna and Ainaté on Thanksgiving 

Jutta, Greg, and Lukas 

Úna

New Digs

This dispatch is coming to you from the 3rd Floor at Summit in Oakland. My mom was accepted to the acute rehab facility and will be here for 1-2 weeks. The social worker at Alta Bates emphasized the rather strict criteria they have for patients here so when she returned a few hours later to say that my mom had been accepted, Nora said she felt like she'd gotten into Harvard.

Ralph oversaw the transfer from Alta Bates this morning and while there have been some understandable hiccups that come with an intake day at a new facility, we're getting settled in. The room is new, spacious, and once again has a view of SF and the Golden Gate Bridge (I wonder what they could get for this place on Craigslist...).

While here, my mom will get a minimum of 3 hours of physical and occupational therapy each day to rebuild her strength. They take a holistic approach to rehab so also have a social worker, a nutritionist, therapy dogs, and apparently even someone to cut your hair (my mom asked about getting a touch up on her hair color too). The goal here is to emulate the outside world as much as possible, so they have patients get dressed in their own clothes in the morning, go to the dining room for meals, and try to have as much of a routine as possible. She was nervous about moving over here but overall feels good about the care and work she'll be doing in order to get home as quickly as possible.

And now for some pics of Úna. I can't share my favorite from today, but suffice to say that little missy discovered if she flashes her bum at me I will laugh pretty hard so she has returned to that joke-well more than once...

Minor setback but cute pics

Returning home from a birthday dinner for Ainate on Wednesday evening (carrying a chocolate cake, of course!), my mom took a tumble and fractured her elbow and a pelvic bone. She was brought to the ER at Alta Bates and is now ensconced in a room on the 6th floor with a view of San Francisco and the Golden Gate Bridge. 

We had a visit from the orthopedist today and she'll have surgery on her elbow on Sunday. Fortunately the fracture in the pelvic bone is small enough it will heal on its own. Assuming all goes smoothly with the surgery, she'll stay in the hospital for another day or two and then be discharged. 

All things considered, the patient is in very good spirits and has been eager to get up and out of the hospital bed when she can. She'll be in quite a bit of pain for the next little while but so far all signs have been positive. Obviously being in the hospital the week of Thanksgiving was not in the original plan, but we are making due and are happy to be in the care of Dr. Cecchi and his, ahem, charm, the orthopedist Dr. Zwahlen, and the rest of the staff at Alta Bates. 

And now... some Úna pics since that always makes everyone feel better and smile. 

The 29th: always a day of reflection

January 29th, 2014 was the day of my transplant so the 29th remains a day that is etched into my brain so to speak. Today marks 14 months post transplant.

The big health news is that I am finally off the " damn steroids". Phew. Mind you they are a miracle drug when you need them but I am immensely relieved--- after 3+ years of almost continual use--- to be steroid free. Eoin commented that my energy was more " Sile energy" as opposed to " steroid energy" so I am assuming that that  is a good thing. ( you never know with your children...!). And my huge cheek bruise has finally faded to an acceptable hue. In other words I don't look like a prize fighter anymore. Despite minor aches and pains I feel very good. Drs Cecchi and Nakamura remain happy with my progress and joke that my counts are so good that I can donate blood!

On the work front, in addition to tutoring, I am also doing a spot of teaching--- 3 hours per week to seniors in Chinatown. It is enormous fun and it is refreshing to be back in front of a group. I have also been doing some Skype tutoring which is magical in a way.  For me to be sitting here in California and teaching someone in France or Pakistan is kind of amazing.

Donor Frank and wife Janet were visiting 2 weeks ago and one of the many fun things we did was visit Pixar for a preview of Eoin's latest movie "Inside Out". We all loved it. Make sure you go to see it when it comes out--- June 19th. And cheer when you see Eoin's name in the credits. His name appears twice no less. 

The famous Úna is talking up a storm. The only problem is that we don't always  understand her. Last week in Carmel she demonstrated that she knows our names--- well a version of them anyway.

O E for Eoin. OG for Gershwin (dog) and both Jim and Ralph are " Raf".

As always I remain incredibly appreciative of all of you and of the many ways you keep me afloat! Thank you. Xxo

Eoin and Ainaté with friends Colin and Steve on their way to the Inside Out wrap party

Eoin and I on Mother's Day ( of course we coordinated our outfits)

Úna taking her job as Jim's helper very seriously 

Nóra and Úna enjoying the beach in Carmel

A series of unfortunate events....sort of

Well that is a bit dramatic but I couldn't resist the urge to use that great phrase.

In fact I have had a number of issues in the last few weeks: a blood clot in my calf. But Jutta pointed out how amazing it was that my blood was actually clotting. And when you think of how long I survived with a mere 5k to 10 k platelets, it is miraculous. ( Platelets were 107k last week). Then I had a 10 siege of a truly debilitating stomach flu necessitating many days and hours of infusions.  And for the dramatic one. A face plant. Apparently it is very difficult to literally fall on your face but since I am so brilliant, I managed it with no problem! The result. A huge bruise on my left cheek. But I was very lucky as I broke nothing. And honestly when you see me, you will realise how amazing that is. ( I tripped on uneven pavement on my morning walk). Finally....And I have decided that this it for medical mishaps, I have joined as a friend says " the cold club". Two weeks of sniffling, coughing and hacking. I have a big box of face masks and they are getting a workout both as cover ups for my bruise and to protect others from my germs. But despite everything, I feel really good. Cecchi and his team have been taking fantastic care of me and he points out that recovery time will always be longer for me than for ordinary mortals who don't have their brother's immune system!  

In other news.  The newish biz English Over Easy is picking up and it is fun to be teaching again.  I would love to build up more clients online and so if you have ideas or referrals, I am all ears. 

 I have also been sewing and below is my latest project. It is perhaps the never ending item as I keep making another little tweak here and there. The latest being a line of Sachiko stitching to prevent the "white" part from fraying. God daughter Bridget has volunteered to give me some coaching on sewing with knits which I look forward to. 

Úna continues to delight and and she is babbling up a storm. Her clearest word is " goodbye". My niece Sheila finished her chemotherapy --- a huge milestone. The next step is surgery. 

As always, my spirits are buoyed by all of you and the continued love, thoughts, and good cheer you send my way.  Thank you.

And now for the only reason you read this.......

My niece Aileen with Aoibh on her right ( Sheila's daughter) and Shona on the left. Shona is the newest member of our extended family)

Examining Gershwin 

Helping Ainaté work out

Waking up

Neighborhood walk

January 29, 2015: one year

 I had my one year visit with Dr Nakamura on Tuesday and he pronounced everything " great". Never mind that I am on blood thinners for a clot in my leg! Details. But I feel really good and extraordinarily grateful and fortunate to be here. I have said it before but honestly it really does take a village. I would not be here were it not for the extraordinary care and love of my family, friends, doctors and various nurses and medical people.  Thank you all. We will have a big celebration in May or June when we can gather around the pool in Forestville. In the meantime, I would like you all to send good healing thoughts to my niece Sheila who,at age 39, is undergoing chemo for breast cancer. Xxo

Dr Nakamura and I on January 27 ( before my bone marrow biopsy!)

Frank and Síle in NYC  Jan 2015

Nóra and Ainaté Dec 2014

The granddads and Úna  Mexico Dec 2014

Úna enjoying  the beach Mexico Dec 2014

Eoin enjoying watching Úna enjoying the beach!

A banner class

This post has nothing to so with my transplant except that it is a testament to how well I feel that I am back in organizing/crafting mode!

Banner class

Yes. A banner class as in making banners but the other meaning would totally work too.

I casually mentioned to Carrie V, who  has really got into paper crafts, that it would be fun to have a paper something class. I kind of thought vaguely sometime in the future but our girl Carrie got right on it and lo and behold the class was created!  Not too far in the future but on December 14. Yea for Carrie!  

Details

Who

Taught by the fantastic Carrie Vermazen. Anyone can join. No prior knowledge needed. 

What

 

A wonderfully whimsical paper banner that you can use year round for all manner of celebrations

When

Sunday, December 14 from 1:30 to 4:30 ( you might be speedy and finish earlier)

Where

TBD depending on how many of you want to join the banner bonanza. ( Of course we will let you know)

Materials

The kit is provided and comes with everything you need to make the banner. It also has all kinds of fun pieces for you to make cards, invitations, goodie bags etc at home.  Carrie has an extensive "library" of ribbons, stamps and other fun stuff which she will bring so you can add some craziness to your creation. Sile will provide shortbread.

Cost

$20. If you let us know by 10pm tonight ( Dec 2nd). I know. Not much time but we only realised that the kit sale ends tonight.

$25 until December 7

Fee will be collected in class. 

RSVP 

Leave a comment below or email knitoneone@gmail.com

We look forward to seeing you! Xxo

Thankful.

On thanksgiving day last year my body was definitely starting to give out. And I was kind of counting the days to the transplant.

Fast forward to today. I feel great. Sure I have a few bad gashes on my legs ( healing). I get tired easily. I often can't sleep well ( damn steroids). But I am so grateful to feel healthy, normal, and full of optimism and brio. For this I am thankful for terrific medical care, a perfectly matched donor, and an amazingly wonderful family and group of friends. 

It isn't as if in the past I was churlish and ungrateful. At least I don't think I was. But there is nothing like facing death to make you feel really truly grateful. Amazingly there was only one time that I thought I wasn't going to make it. I was lying in my bed at City of Hope drifiting in and out of consciousness and  thought " I wonder of I am going to pull through". Immediately another voice popped in and said  "Don't be ridiculous. You have worked way too hard to give up now"! 

So a huge thank you to you all for the care, love and concern you have shown me in the past three years. I wish you all a wonderful Thanksgiving and feel truly blessed to have you in my life. Xxo

Úna in playground wearing her Aran geansy from Auntie Janet

Nora and Úna early in the morning

Eoin w/ Úna on her first birthday

At Jutta and Greg's wedding

9 months/marathon visit to the City of Hope

It has been 9 months to the day since the transplant so it seems like an appropriate day for an update.

Jim and I spent the day yesterday at the City of Hope. It was grueling I have to say mainly because I had to roll out of bed at 4:30 am. The ridiculously early start was because I had 4 appointments at the City of Hope. 

 You see a month ago I bumped into a curtain rod and because the " integrity of my skin" ( medical talk) is lousy, I ended up with 4 fairly significant gashes on my legs. Any normal person might have got a bruise. And the curtain rod? Well I was sewing curtains and had taken the rod down to do some measuring. One of the wounds is big enough that there was talk of doing a skin graft. So not only was I seeing the by now famous Dr Nakamura but also had to add in the skin graft specialist, the dermatologist, and the gastro guy. But.....the good news is. All my counts are " excellent". And all of the aforementioned specialists agreed that for " for now" a skin graft is not necessary. In the meantime, I dress the wounds every day ( takes about 45 minutes) and see Wanda, a wound specialist, once a week. This in addition to my usual round of blood tests and Cecchi visits. Now you know why I am so busy.

The bad news: I was told because of my leg bandages --- which start on my feet--- I should wear crocs. Crocs! 

In other news. Úna turns one on November 4 th. Gershwin is a big hit with her and is very patient when she clambers all over him. In fact he enjoys her attention unlike other dogs we could mention ( Are you listening Lola?) And I launched my tutoring service last week, English Over Easy.  Pop over and look at the site. I did it myself with lots of help from our resident expert, Jim! And of course if you have friends who could use a little English Over Easy help, send them my way.

As always, a huge thank you to all of you who continue to help me in ways big and small. To call this process a journey is an understatement. A huge understatement. And I appreciate the fact that you all continue to " heave to" to support me. Xxo

Úna and Gershwin

Jutta and Greg at their City Hall wedding

Wedding and hair fun! 

Nóra and Úna wish me luck at City of Hope

Today is my birthday birthday....

And I feel very lucky to be here. Not only to be alive but also to feel so good. My friend Jane C commented that I was looking hardy which she said was a compliment. And.... I certainly took it as one! Dr Cecchi keeps saying " You are doing great" and who am I to argue with the man himself. I return to the City of Hope at the end of October. In the meantime Dr Nakamura and I keep in touch via phone and email. He has stopped on of my anti rejection drugs and I am doing fine. Alas I  am still on the "damn steroids"  albeit a small daily dose

I am currently building a web site for my English Language tutoring business, English Over Easy, and it feels very exhilarating to be exercising my brain in such a fashion. Thanks to the brilliant Nancy F of Wordworking for the great name. She also suggested Grammar Grandma which I also love. Will let you all know when I launch the site. Jim has been helping and it is fun to work on it together. 

Today I am speniding time with family, friends and the new dog, Gershwin! He is a poodle terrier mix, and is a wonderful mix of goofiness and calmness. ( 2 years old). He was dumped at the Sacramento shelter, picked up by NorCal poodle rescue and adopted from them by me. He is great fun.

On Thursday Nóra and I will go to SF to see her stylist, Jessica Rose, who is gong to color my hair -- current thinking is pink but will let you know. Thank you Nora for this birthday treat.

And in Úna news. She is starting to take steps. Yes. Steps. A few at a time but pretty soon she will be marching hither and yon.

As always I am so aware that I am alive and healthy because of all of you. And honestly a day does not go by that I don't think of you and thank you. 

Úna with her new best friend!

The images below are now framed and in my hallway. I smile every time I pass by.

Meant to take another photo of him last week but I forgot. The famous Dr Cecchi withLiz M

With dr. Nakamura. And I now have hair. Curly hair!

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