I tried to figure out why that was. I think that the subject
is too overwhelming for me. I can’t believe that I’ve finally come to this
point in my cancer journey. It’s time to get the permanent ostomy bag.
Those of you who follow me know that I have been dreading
this time for many years. I narrowly escaped a permanent bag many years ago.
Then – last October, a rectovaginal fistula broke through and I was told that
it was time for a bag. But then, amazingly, it seemed to heal and I was given
another reprieve.
Unfortunately, I was wrong. It didn’t heal. I was able to
keep the tissue fairly intact for a long time. But – when we took the girls to
Washington DC for Spring Break, the constant running around and strain on my
fistula was too much and I began to experience necrosis of the tissue. There
was no going back.
Over the last two months I ran around to different surgeons –
USC, UCSF and the Cleveland Clinic to see if they had any other options than
Stanford had presented to me (which was a permanent ostomy bag). Unfortunately,
each surgeon agreed with Stanford claiming that my only option at this point is
the bag.
In May I was given the opportunity to address my board,
other leaders in the life sciences and members of Congress about my life as a
cancer patient. I took that opportunity to ask the life sciences leaders (in
particular the medical device leaders) to let me know if they were aware of
anyone working on an artificial colon. Alas – it appears as if that’s not something
that is imminent.
So – here I am, attempting to prepare myself mentally for
the challenge I have in front of me. Next Wednesday, July 1st, I’ll
go under the knife again. When I wake up, I’ll either be sporting an ileostomy
or a colostomy bag. I’m hoping that it will be a colostomy. I’m not going to go
into the reasons why, but apparently, life is a lot easier with a colostomy.
I’m scared. I cry easily. I so dread this permanent change
in my body. I know that lots and lots of people live with the bag. I’ve talked
to many of them. I was even connected through a friend to Rolf Benirschke, who
used to be a kicker for the San Diego Chargers many years ago, and in the
middle of his time with the NFL, ended up having to get a permanent ostomy –
but STILL was able to return to the NFL. He has been holding my hand, along
with so many others, as I am about to embark on this difficult journey.
I guess that this would be easier if this would mean the end
of my cancer journey. But it doesn’t. This doesn’t impact the cancer at all.
All it does is fix my piping so that my body isn’t susceptible to becoming septic.
Furthermore, when I was at Stanford last week, my cancer indicator number had
jumped up. So – I’m getting a bag and there is a strong possibility that my
cancer is growing. Let’s just say that it’s not an easy time for me.
I am hoping that getting this bag on will reduce some of the
constant pain that I’m in. I am on some pretty significant pain meds. I don’t
like living my life on pain meds. It’s just not right. But – the pain is too
great to go without them. I wake up many many times during the night in pain. I’m
never rested. Perhaps the bag will bring me some relief. Some sleep. Oh – how I’d
love to have a full night of sleep.
As the time gets closer for my surgery, I find myself in an
emotional upheaval. It’s hard to keep my head on straight. But – I have to. I
have a job that is counting on me. I have children that are counting on me. I
have me that is counting on me.
Please send prayers my way over the next week. My body is
about to change dramatically. But – it’s time. I’ve held out as long as I
could. If I wait anymore, I’ll be putting myself at risk. And – that just isn’t
worth it.
Thank you for all of your love, prayers and support. I’m
sorry that I didn’t tell you all sooner about this. But – I still think I’m
coming to grips with it. I guess it’s a good sign that I finally made it
through a blog post. Before, I erase this and start again another day – I think
I’ll just push “post.”
4 comments:
Eve
I can't imagine how hard this is for you. My thoughts and prayers are with you. One thought, it is ok to allow yourself permission to break down a little. Your girls and husband are strong and your job will last a little while without you. Take care of yourself and hopefully, this procedure will ease the pain and help you get sleep. With much love, David
Sending so much love to you. - Jenn Webber
Good luck for next week, Eve. We'll be thinking of you. We know how strong-willed you are, and are sure that yet again you'll rise to the challenge with your usual positive mind. With our love. Veronica and Edouard.
Eve, wishing you the best of outcomes in this difficult situation. I like what David said--I know you have enough to do, but I hope you can treat yourself with tenderness and compassion. So far you have dealt with each new reality with grace and strength and you'll continue to do so. Love, Anjie Nelson-Wally
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