For cycle 4, infused last week, they decided to drop one of the chemo cocktail, (Etoposide - rhymes with genocide) which is epecially hard on my system and may lead to me being so neutropenic in week 2 each time. As I write, it's the infamous Day 9; I'm not feeling so good and my temperature is rising...
I got to see my surfer-dude cancer buddy Ross last week while I was in. He had just been told that the highly aggresive chemo he had been having (similar to mine but on a 10 day cycle - ouch) was officially having no effect, and they were stopping it. His sarcoma is lodged between his aorta and spine so not a good candidate for surgery, so a couple of radiotherapy sessions to potentially reduce it and that was all that was presently on offer. He was amazingly philosophical about it all and is looking for alternative - and I do mean alternative - treatment ideas involving food and maybe going to Mexico. Good luck Ross.
It was Jo's funeral / celebration of the life today, and it finally hit me why she was so admirable: she always took on the fight for the underdog. No popularity, glory or rest there. But in a world where most people don't help with others' battles, and there are still deniers that kids with special needs need special treatment, Jo's energetic, passionate and tenacious advocacy and teaching helped those who needed it most.
Carpe diem!
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14 comments:
Paul,
It's Stacey Barr here, just dropping in to say hi, and to have a quick read of what's been happening in your life lately.
It made me think about the dichotomy (maybe I've got the wrong term) of fragility. As I monitored my emotional reactions to reading your latest posts, I realised it was me, not you and your fellow cancer-havers (is there a nice way to say it?) that was fragile. You guys, with your strength and focus and optimism and tolerance and stick-to-it-ness, rock me.
What do you most want from spectators like me, Paul? How can I support you from so far away?
Does it help to know that I think about you quite often, very fondly too, since when we met in March, I felt you really understood me, and even just through your expressions, that I knew what you were saying to me. Distinctly I remember the SAS presentation at my workshop, and your expression said just so much, for the fleeting 2 seconds of eye contact I had with you.
Well, rather than ramble further, know that my thoughts are with you and I imagine you strong like Lance Armstrong, fit, energetic, happy, and enduring.
Smiles,
Stacey.
Paul --
What an inspiration you are to your readers, friends and family.
From way over here, in New York, I send my love and hopes for you, Daniela, the children and your Mum and Dad-in-Law, my beloved Aunt Rene and Uncle Dante!
Ed Jr. mentioned your blog to us in his own email just this week, so we apologize for not reaching out sooner. He is quite worried as we all are and we appreciate you putting this blog together so people can keep up.
As a writer myself, I find your journey and your candor frankly, quite applaudable. I know you are the type who does not want kudos, being a selfless gentleman with great taste and intelligence. But you need to know that this is a wonderful thing you are doing.
My husband, Joe, (yes, I said "husband") and I, along with my folks, Ed and Peggy, will be calling soon to have a more verbal connection.
But please know that all of us, Ed Jr. Glenn, Eric and I are praying for you from around the globe, and keeping you and your family in our thoughts for a speedy recovery.
God bless and Much Love,
Jill Schuck "Brown" xoxoxox
Paul,
We are friends of Tony and Margaret and are all pulling for you from afar, across the pond, in Canada.
You are doing amazing and keep up the spirits!
Jim (also a cancer survivor) & Vallerie (giver of TLC) King
Dear Paul,
This is a message from your very distant cousin in Illinois. I just caught on to your amazing blog and hope (since I am cyber challenged) that this is the correct way to reply.We wish you grace and cheer and hope you have a fond memory of us, as we do of you and your brief visit to Chicago years ago. The sailing and yacht club? And your Castillian Spanish being no match with the Mexican waiter!
Love and prayers to you and yours and WOW Keep up the good work.
Susan McCarthy (and Judd and Anne)
Paul, I'm sorry for Jo's sudden passing and am touched at the inspiration she's left with you all. You're right that we should all hope to accomplish even a fraction of what she did in our own flashes of time on this planet.
I worry about your rises in temp and drops in blood counts as you drink the concoctions. I'm glad they are omitting a particularly yucky ingredient. I am still so encouraged to see the differences in your CT scans. Keep up the good work, Paul.
Hugs,
Michelle in St Louis
Hi Paul, catching up again on your brilliant diary journals. Why ever did you go into accountancy? Even tho' you've been a very successful & accomplished globe-trotting acct/business consultant etc, Fleet Street (or is it Wapping, now?)has been all the poorer as a result!
Hope this finds you going thru' one of your better phases to enjoy a near-normal day for your transition to the big '0' - your 50th BIRTHDAY! Doubtless, you know enough doctors should a little counselling be required! Heck, it's only another figure Paul... treat it as a 'credit entry'in the big book of life! I was there 13 years ago & just look at me now (...er, on 2nd thoughts, best not!).
So, this is my 3rd attempt in a week at this blog business. Not on the web at home so using the library PC & tend to forget when my time runs out. Have also just messed up a web booking for a flight to Belfast - PC can't cope "page expired". I now need counselling.. know any good doctors?
Finally, condolences and prayers on the sad news about your good friend Jo, RIP, & her family.
Have a great 50th Paul & regards to Daniela & family. Very best wishes until the next blog.
John & Marian Cunningham.
Dear Paul,
Just to say Hi and that I have said a prayer for you every night since I heard of your challenge.
Theo
just to say, congratulations on your forthcoming 50th birthday! Enjoy your celebrations at the weekend. Will be thinking of you all. And good luck with the next lot of chemo!
Love, kathy, Simon and Joe
PS It's not that bad being 50 !
Hi Paul
POM from down under here. Have been following the blog and about time I commented again. And now I hear its your 50th birthday too. Hope you have a great day and one to remember with all the family with you. We are all thinking of you and fighting the fight for you. We're back in December so we'll see you then.
All the best
Philippa
hi paul
thinking of you always keep up the great work very happy big 50 birthday (mine was in Aug)good luck with your next round of treatment *you are doing great* love to all hope laura enjoying her job you very welcome to dublin anytime Happy birthday
love Anne Tarlach Hannah & Matthew
:-)Special 50th birthday greetings today Paul from Mum,Ann Marie & Catherinexxxxxxxxxxxxxxx,
We love You & gently strive with you,through these 3 days & to the 6th cycle stage,the review & beyond.
Our love also to Daniella & all the family.
"Slan" for the present dear Paul,
Toasting you from Co.Monaghan,
xxxxxxxxxxxxxxx,
Hey Paul!!!!just checking you are doing better. sory for not beeing more in touch. My studies are driving me crazy!!!!!
I also wanted to send you a big kiss and a huge hug for your coming birthday!!!!!You and the family are in my thougths as you always are.
Send mi regards to everyone at home and give Luke a big hug for his 19th birthday coming now in october (I know he is going on a gap year and I won't be able to congratulate him).
Hope you feel better. Big kiss for Daniela too.
Love you all, Mariana
Hello Paul, Just logged onto your blog to see how you are doing and discovered that it was your 50th birthday on 11 September. We feel guilty for not realising that but Katie and Luke never said a word about it. So, Happy Birthday for 11th. We are really looking forward to sharing Luke's 19th birthday on 7 October. We will try to make it very special for him in far away New Zealand!! We all remember you sharing Karen's 30th birthday and how you insisted on all the Japanese food being cooked to a well done stage! We are sure the chef had never been asked that before! We seemed to remember the highlight of themeal for you were the hot potato chips they managed to cook up for you.!!!!
We know you are going through a tough time at the moment but you will no doubt also be aware that all around the world people are WILLING you well.
All our love,
Noel and Shirley
Hi Paul
Have just checked your diary to see how you are getting on - I am surprised at the level of good spirits you are showing.
Also realised that its your birthday this month - happy birthday and enjoy yourself.
Just came back from Aarhus at the International Gala, tiring weekend but enjoyable - Didnt swim but helped the UK team and we notched up some medals, including coming first in the two relays. Unfortunately we didnt win the cup - the Danish took that this time round. Does bring back to me the hard work at the 2000 gala - of which we were both on the steering group. Anywyay enjoy your birthday and hope to catch up soon.
Darren Pallett
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