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

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?!

4 month checkup with Dr Nakamura

Úna and Síle sporting our sun hats . We are racing to see whose hair grows the fastest!

Jim and I spent Friday May 30 down at the City of Hope. Everything went extremely well and I was very happy to be there. I think it will always be a kind of home for me given that it is the place that literally has given me a new lease on life.

Dr Nakamura is very pleased with my progress. He even used the phrase " a successful transplant" which of course was music to not only my ears but Jim's too. I think he was a bit disappointed that he was not able to start decreasing the number of anti rejection drugs. The reason? I have had a touch of intestinal GVH ( Graft vs Host disease) OR it could be that my intestinal tract is just recovering from all the indignities it has suffered. Either way he has me back on steroids and some other drugs. But.....I feel fine! 

Alas he does not want me back singing with my chorus (BCCO) until at least January 2015. His exact words were: " Too many people. Not enough control over your environment". I gather that my new immune system will not be fully developed until the one year post transplant mark and it is true that 195 people in an enclosed space adds up to a lot of germs. He totally nixed the idea of swimming in lakes too! 

Donor Convery, aka my brother Frank, begins his new job today ( Monday June 2) as chief economist for the Environmental Defense Fund in NYC. He will return to Ireland regularly in the next few months however as my sister in law Janet is undergoing chemo for early stage breast cancer. Loads of positive thoughts are streaming across the country and the ocean to both of them. My sister Máire returns to Zambia on Thursday after having been here 6 whole weeks. A big shout out to her for traveling such huge distances to take care of me.

It is great fun getting to see many of you again. I am truly blessed with all of you, my fabulous, wonderful, fantastic, group of friends and family.

Úna modeling the sweater Joanna Davenport knit for her 

Úna demonstrating her new crawling skills

No caption needed!

Day 100

IDay 100 was yesterday. I had thought it was tomorrow ,Saturday, but Jim and Eoin did the counting and alerted me that it was yesterday! Since I hadn't realised it was yesterday,I had no big celebration planned. But..... I did happily much on an almond croissant brought to me by my friend Cecliy M. As you may recall, so called " outside" food has been a no no so this almond croissant was in fact a big deal. And totally delicious too. ( thank you Cecily!)

The days are passing quickly and uneventfully. This is good news people! We don't want any drama. I walk at least 30 minutes every day and in the last week or so  I have been able to pick up the pace( To call what I had been doing " walking" was a bit of an exaggeration--- more like an amble---). Energy levels are coming back albeit slowly. Very slowly. And all my blood counts are improving. Yesterday for example my platelets were 154k

I see Dr Cecchi once a week and  thankfully I am one of his fast appointments. He of course is thrilled with my progress and was literally dancing the first time he saw me post transplant! Jim and I travel to the City of Hope on May 30th to see Dr Namkamura. I will once again have a bone marrow biopsy. Oh joy. Number 13.  I am still on a fairly impressive number of medications, including anti rejection drugs, but the current number of drugs pales in comparison to what I had been taking.

The whole family + my sister Maíre goes to Forestville this weekend where we will be celebrating Eoin's 32nd birthday and my 100 days. Alas I will not be able to get in the pool. However, Dr Nakamura has said I can swim beginning on July 29th, 6 months earlier than a lot of the literature has indicated, so I feel lucky. And of course Úna gazing will be on the roster of activities. We will try not to fight about who gets to hold her but I think I might be able to use recent events to get special Úna cuddling privileges! 

 I am hastened along the path to full recovery by all of you my family and friends. Thank you and big huge hugs of appreciation  from me to you.

And to what you have been waiting for---- pics of Úna....

Day 80 and Homeward bound

Today I had my last appointment with Dr Nakamura--- at least for the time being. ( I return on May 27).  All is still on track and I can go home tomorrow. Phew. My platelets were a whopping 163k today which is well into the normal range. Amazing. Incredible. Unbelievable. The next hurdle according to Dr Nakamura is to see what happens to my body when I stop taking the anti rejection drugs. But that is a few months away. For now I will revel in the idea of going home. 

Amazingly I feel sad about leaving the City of Hope and Dr Nakamura. Well maybe it's not surprising considering the amazingly fantastic care they have taken of me. And when you think of how I was when I arrived. I will always be grateful to Dr Cecchi for really pushing me to come here. After weeks of discussions about Stanford vs City of Hope He took me by the shoulders looked me in the eye and said. " Forget about your children and grandchild. This is your life. And I think you have a better chance of making it there. End of story". And a huge, big enormous thank you to Nora, Eoin, Ainate, Ralph, Jim and Frank for making the necessary sacrifices so that it could happen.

And all of you. I don't think I could have come through all of this without your presence. It could have been dreadfully lonely. But it wasn't. I felt close to all of you because of your notes, gifts, emails, texts, photos, cards and even old fashioned honest to goodness  letters! 

I arrive home tomorrow Saturday April 19 and look forward to seeing you all. Xxo

This is in the Rose Garden at the Ciry of Hope and is the foundation of their philosophy

Dr Nakamura and me

And here's Úna telling me to hurry home!