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Wednesday, August 15, 2012

Will You Wear White, Gilly Jenkins?

Blogging Tunes: The Howard Stern Show - September 15, 2010 (yes, I'm two years behind)

This entry is not mine, it's the story of my co-worker, Gilly Jenkins who has been battling Hodgkins Lymphoma for two years.  She's gone through a lot more sh*t than I have, and is one hell of a fighter.  She is an inspiration for me and for us all.

In my last post, I challenged you all to support the LLS and get involved in this year Light the Night walk.  If my story wasn't enough to move you, maybe her's will.  Here it is in her own words:


Gilly and her daughter - October, 2011

My name is Gilly Jenkins and I work in the sales team for Salesforce in the UK. As well as working for the best company in the cloud, I'm a wife and the mother of a son aged ten and a daughter who's only four but seems to have been born a teenager.

I love swimming and used to regularly swim one hundred lengths of the pool at my health club - and running around the forest that surrounds my home in the beautiful Hertfordshire countryside

I've always considered myself to be fit and healthy so imagine my surprise when, approximately two years ago, I was diagnosed with stage II Hodgkins Lymphoma.  

I was assured that 95% of patients recover from this form of cancer. The cure, so I was told would be a six month course of chemotherapy

After the treatment the signs were good, my PET scan was clear. But unfortunately the cancer returned with a vengeance within a couple of months. 

The consultants needed to reduce the size of the cancer so that I could have an allogenic (donor) stem cell transplant as soon as possible and the process started in September 2011. Over the next five months I had four chemotherapy regimes.

Each course of chemotherapy meant a stay in hospital away from my family and each time I was told that the odds of sucess were high.  But, I was always in the small percentile and all four failed to get me to a stage where I could have that vital transplant. 

My favorite pic of Gilly: Proud and Strong - Feb 2012

The last chance was to try a drug called Brentuximab which isn't widely available in the UKbecause it hasn't been approved by NICE - our equivalent to the FDA. The clinical trials in the UK were looking positive but because the treatment didn't have the NICE approval, our medical insurers would not fund it.  

Brentuximab is a leading edge drug and is incredibly expensive. Because of my illness it had been a long time since I had earned the big commission payments that my family had grown used to. We would find the money somehow (I'm worth it!).  And this would mean selling our home or months of fundraising

Fortunately, we didn't have to sell the house. Marc Benioff, our CEO, most unexpectedly and very generously offered to pay for my treatment. (see related article.)

I've not met Mr Benioff in person yet.  But I read that he has the body of a bear and the mind of a fox.  I would add to that by saying he also has the soul of an angel because Brentuximab turned out to be my wonder drug.  

By March 2012 my cancer was in remission and I could have a stem cell transplant from a unrelated donor who had been found the previous November

Before the transplant I was told I had a one in four chance of dying which is kind of scary. I was advised to plan for the best and prepare for the worst, which involved getting my will up to date and writing letters to my children to remind them just how much I love them.

The transplant involves a six week stay in hospital. The first week was for "conditioning" which is an ultra high dose of chemotherapy. The day of the transplant is called Day Zero and for such an important procedure, it's a bit of an anti-climax. You lie in bed and have a painless infusion of peach coloured fluid that you hope will save your life. More gruelling is the following weeks when your body battles wi the introduction of someone else's DNA and the accompanying drugs.

On Day 100 I had a PET scan and it was clear!  That doesn't mean its all over but it is a very good step in the right direction.  I will be scanned for the next 5 years snd if there is no reappearance after eighteen months, I will be very happy. I have been warned that the cancer can always come back  and as a result of all the chemotherapy I've had , I will always have a higher risk of developing other forms of cancer but for now I would just like to get to the eighteen month mark.  

Anyway, it's now August 2012 and my road to recovery is going OK but it is three steps forward and two steps back.  I have very low blood counts which make me neutroplenic.  To boost my counts sky high doses of steroids have been added to my daily cocktail of drugs and medicine.  The consultants monitor my condition closely in a bid to find out the cause of the low blood counts and address it.  

My immune system is very low and consequently I have a high risk of infection so I have to avoid crowded oplaces, public transport and anyone with coughs, colds, fever etc.  A common cold could have serious side effects for me and I have been admitted several times since being  "released" :(

Not that I've got one but, I wouldn't wish this on my worst enemy. When your being treated for cancer you have a lot of time for contemplation. I have a strong and determined personality and I am completely focused on "Kicking Cancer's Arse".  I'm alive and truly grateful to have the complete support of a loving family, a dedicated medical team, the best drug treatment, a generous donor and what's more, I'm employed by a great company.  So, maybe it's best that cancer picked on me.  

I'm far from being cured  and every day I am completely exhausted but I'm very happy to be here and feel 100 % positive. I  hope to feel back to my normal self and full of energy soon and i look forward to going back to Salesforce and giving Marc Benioff a really big bear hug!

Gilly and her family - Feb 2012

I'm supporting Light the Night for all the people who need their own wonder drug.  As my story proves not all the drugs work for all patients so, it's absolutely essential that we continue to fund research to help them find a cure.


We now return you to your regularly scheduled ass kicking.


Tuesday, August 7, 2012

Here Comes Johnny Singin' Oldies, Goldies

Blogging Tunes: TV on the Radio - Dear Science

Preamble: if you're only going to skim this, please scroll to the bottom for the most important part of this post about this year's Light the Night Walk.

Scroll down for info on the 2012 Light the Night Walk

I guess it's kind of pathetic that my primary means of discovering new(er) music is investigating Phish covers. I guess I still don't really get Pandora (let alone Spotify.)  Anyway, for whatever reason, Phish recently started playing a song called Golden Age.  I sensed at once that it wasn't an original, but after listening a couple times, I realized I had no clue what it was.  Now I'm sure that several readers of this blog (ejsphi and Matty Nabib to name two) are gonna be all, "jg, how do you not know about this album?"  Alas, I'm listening to TVotR's "Dear Science" for the first time as I write this (on the Larkspur ferry on the way home from work -- the sun reflecting off the water and the Golden Gate bridge to the West.) [follow up before posting: ironically, this was about the same time as the explosions started in Richmond.]

Two tracks in, it's quite strange, but enjoyable.  Unique instrumentation and arrangements.  These guys have a pretty original sound -- that's a plus for me, and a primary reason I still love bands like Air and The B-52s. Can't say I love this yet, but so far it's ok.

Music has been top of mind recently as I attended Phil Lesh's new club not once, but twice, in the last two weeks.

Left to Right: Fake Jerry, Stanley Jordan, Phil Lesh - 7/27/2012

Phil with Yonder Mountain String Band - 8/4/2012

I can't believe it took me that long to check this place out.  It is literally an 18 minute walk from my house -- yes, I timed it -- and I can see good music there, pretty much whenever I want.  Yet another perk of living in San Rafael.  The place is just amazing -- it's so small and the sound is perfect.  Get there 10 minutes before show time and you can get a spot right up front.  The best thing?  All tickets are Will Call, which essentially destroys any possibility of a secondary market.  Brilliant.  Personal goal: go there once a month for the next several years.  Want to join me for a show?  Keep your eye on the event calendar and get in touch!

This Friday I'm going to Outside Lands (thanks to Salesforce for a free VIP pass!) Very psyched to see Beck and Neil Young.  I've also heard good things about Fitz and the Tantrums.  Here's the Friday lineup.

We're also gearing up for the San Francisco Phish shows at the Bill Graham Auditorium next weekend.  Looks like I'm only going to Friday and Saturday (both with Heather, Friday with Floyd too).  Was planning on Sunday, but since we're on a plane at 7am Monday morning, I think I'm going to skip.

On to the medical update.  No real change at my last appointment with Dr. Damon.  The GVHD doesn't seem to be getting any worse -- I can't really tell if it's getting better, but it's definitely not worse -- which is good.  Now I think I just need to push into the pain a little stretch out my fingers, wrists, arms, etc.  I've been biking to the ferry once a week, but haven't gotten into the pool as much as I'd like.  Next visit isn't after I return from Europe (going for a week vacation and a week to work -- the aforementioned flight.)

The kids are having a great summer and are finally starting to get along a bit better.  Here are a few pics from Lemos Farm in Half Moon Bay where we celebrated Saanvi Chawla's third birthday last Saturday.  The place is awesome for kids.  Check out the website.

Floyd at 44"
Orion at 37"

Orion looking adorable

Orion the future heart-breaker
Floyd riding a pony

Orion riding a pony

Silly mommy and daddy

Floyd is really getting into hitting (baseball, not Orion) and we got him his first aluminum bat a couple weeks ago.  Here's a 7 second video of him getting a hold of one at a nice field at Dominican.

Heather is also really getting into some awesome gardening and landscaping projects.  Here's a preview of part of the stone path to the front door.  My wife is the greatest!

Side path from daddy's spot in the driveway (in progress)

OK, the important part -- now we'll see how strong my readership really is, or whether people stopped paying close attention when it became clear that I was going to live. :)  I am on a Mission and I need your help.  Last year, with your support, we raised over $60k for the Leukemia & Lymphoma Society via the San Francisco Light the Night walk.  This year, my Mission is to lead to raise even more funds -- the goal?  $100,000.  The walk is on Thursday, October 18, 2012 in Union Square.  It is family-friendly 2 mile, flat walk.  Here's a 60-second PSA:

There are so many ways to help -- I'm very confident that everyone reading this can participate in one of the following 4 ways:
  1. Walk with us!  Sign up to join the San Francisco Salesforce team.  You do not have to be a Salesforce employee to walk with us.  Here is the sign-up form.  Heather, Floyd, Orion, and I will be doing the walk again this year -- well, Orion will probably stroll.  Once you sign up, you'll get a customizable page like mine, and you can raise money too.
  2. Start your own SF team!  Do you work in San Francisco?  Want to get your company involved?  Building a team and fundraising is easy with the help of the LLS.  Here's some info on how you can start your team, or you can email nicole.chapman(at)lls[dot]org.
  3. Walk in your city!  Don't live in SF?  No problem.  There are walks in dozens of major cities around the US.  Find a walk near you and you can experience the amazingness that is Light the Night (and raise money too.)
  4. Support me by donating!  Here's my Light the Night page where you can donate online.  Donating just takes a few clicks and is tax deductible!  Every little bit helps.  Thanks for helping me meet my personal goal of $25,000 and helping raise $100,000.
For more information about the Light the Night walk, and how to get involved, visit the Ways to Participate page.

I walk (and kick) because somebody's life depends on it.