Ah, the Race Director has emerged. He responded to my post on the FB site for the race (which, incidentally I think is a little inappropriate, and I could have taken the opportunity to take it offline, but I am stooping to his level. If you disagree with my approach, share your opinion with someone else). Here was his response:
My name is Erik Boucher I am the person who responded to your request and the person responsible for everything related to this event. I do empathize with your situation and hope that your treatment goes well. I understand that life happens and have created policies and processes to accommodate unexpected situations that prevent runners from participating and gives them options. Most race directors offer no refunds or deferrals. I allow deferrals for any reason until a certain deadline. I offer a refund option for people who don’t want to defer and would like their money back. I allow people to transfer their registration to another person. My philosophy is that I would rather make people happy so that they come back the next year. But there is a point in time before the race when I start to incur expenses that can’t be reversed – I get charged for things even if a person doesn’t participate. I denied your request because it came at the 11 hour when I had no room to maneuver. The database had been submitted to the timers, a bib had been created with your name on it, and your race shirt had been shipped. I’m sorry if my response came across as being curt or insensitive. At the time I was in a hospital NICU with my wife and new born who almost died at birth a week earlier. I’m also dealing with an event that has nearly 2,000 participants and the weather forecast is calling for temperatures in the 40s-50s, heavy rains, and high winds. If you were in my shoes what would you do?
Here's my response:
Eric,
I think it's unfortunate that you didn't have anybody to delegate to
while you were dealing with your own issues with your baby. As a parent I
can't imagine how stressful your situation must have been and I
certainly hope your wife and baby are on the road to recovery. However,
as a race director, dealing with the event issues you outlined is your
job. That is presumably why you have the position--because you have the
skill set to deal with what Mother Nature presents as well as manage
the many running events that the festival offers.
I
hope you can respect the fact that my situation was an extreme one--I
didn't know I had cancer until after I had registered for the race. Needless to say, on April 3, my life changed forever. Additionally, I didn't receive the
clearance that I couldn't run until sometime in May. To that point,
with everything else I've been dealing with, such figuring out
my treatment plan, etc., I apologize that reaching out to you to defer
the race didn't happen sooner rather than later.
It's
clear that we're not on the same page about this, and I'm disappointed
about that. I find it interesting that while you were dealing with your
own crisis, it didn't make you more sympathetic to mine. Additionally,
since I paid for the shirt separately, I presumed that was a loss.
However, please also know that cancer survivors have a very strong
network. I will be passing along this race to all sites where runners
who are cancer survivors congregate and letting them know that this is a
race they should avoid in the future.
If I hear a response back I'll be shocked. If I do, I'm sure it will be as whiny as his first one. If the Fox News station that was a sponsor calls, I hope they do so after I've lost my hair. I really think that will be more impactful. That is supposed to be happening imminently (the hair loss, not the call from Fox News). The whole hair thing really deserves it's own blog post, and I'm sure that will happen.
On another note, yesterday was my 2nd chemo treatment. They gave me a new post-treatment regimen and I must say, I feel much better than I did two weeks ago. Not 100% for sure, but not nearly like death as I felt before. Two treatments down, two more to go.
Wednesday, May 29, 2013
Monday, May 27, 2013
Pineland Running Race: My spirit might be broken but I suspect you might feel the wrath of my awesome friends.
I've been mulling my latest post for awhile, mainly because I haven't really known what to say. I felt much better this week, but my potential hair loss is looming more and more each day. The tentative date I'm supposed to start losing my hair is this Wednesday, May 29. So that's been causing more anxiety. I've been kind of down in general, which has resulted in being bitchy and unfriendly to many strangers. Sorry, strangers.
Despite some earlier postings about anger, I sort of feel numb to everything this week. As many of you knew, I was training for a 25k on May 26. The race was the Pineland Trails Race. This was the longest race I'd trained for in quite a while, since the SF marathon several years ago. I was training with my good friend Meghan and we were doing really well in our training. She was even gracious enough to share running stroller duty when the girls decided they wanted to come along for the ride. And then I got my news.
Even after I got my diagnosis, I was still determined to run. But then I had the lymph node surgery and it took longer than anticipated to recover from that, so that postponed the training a bit. And then I finally got the news that I was in the AC chemo group and wasn't allowed to run any races. That happened sometime in May, shortly before I got my start date.
The good thing about the race was there was a deferral option, which I was obviously going to need now. Earlier this week I emailed the Race Director to inquire about deferring. I realized I was past the deferral date, but I am a firm believer that it doesn't hurt to ask. Well, here was his response to my request:
Hi Rachele
I'm sorry to hear about your diagnosis. Everything is backed into the system already and we have printed a bib with your name on it. Unless you bought the Refund Option we can't issue a refund.
Cheers
Erik Boucher
So much there to be pissed about. What does the bib have to do with the deferral? Why does he reference the refund option? I wasn't asking for a refund. Overall, I was a bit stunned by the response. Additionally, I didn't sign up for the Refund Option because I didn't know I had cancer when I signed up for this thing. I felt a little angry, but I sort of moved on and didn't bother to respond back. The "Cheers" at the end also pissed me off but I sort of forgot about it.
I was telling some friends about this over this past weekend and they got outraged for me. Today I channeled their outrage and posted on the website's FB page. A few FB friends posted their support in response to my sport and I was starting to get excited about sticking it to the Race people. But as the day passed and tomorrow's next chemo round loomed, I felt my resolve dying again, which sort of bummed me out. Thankfully, writing this blog entry has filled the the fire in my belly again, so I'm passing along some information if you'd like to express your own outrage. There are several places you could do so:
The old me would have been all over this like a bull dog. I could tell many a story of how I stood up for myself when I was wronged and got what I wanted in the end. It was a trait that could annoy the hell of our people but it was actually something I took pride in. The current me feels this is kind of petty but also misses the old me and wishes she could muster the energy to fight back. Well, this has been an upbeat post, no? Anyway, since I'm having a pity party, if anybody wants to speak up, I'd appreciate it.
Despite some earlier postings about anger, I sort of feel numb to everything this week. As many of you knew, I was training for a 25k on May 26. The race was the Pineland Trails Race. This was the longest race I'd trained for in quite a while, since the SF marathon several years ago. I was training with my good friend Meghan and we were doing really well in our training. She was even gracious enough to share running stroller duty when the girls decided they wanted to come along for the ride. And then I got my news.
Even after I got my diagnosis, I was still determined to run. But then I had the lymph node surgery and it took longer than anticipated to recover from that, so that postponed the training a bit. And then I finally got the news that I was in the AC chemo group and wasn't allowed to run any races. That happened sometime in May, shortly before I got my start date.
The good thing about the race was there was a deferral option, which I was obviously going to need now. Earlier this week I emailed the Race Director to inquire about deferring. I realized I was past the deferral date, but I am a firm believer that it doesn't hurt to ask. Well, here was his response to my request:
Hi Rachele
I'm sorry to hear about your diagnosis. Everything is backed into the system already and we have printed a bib with your name on it. Unless you bought the Refund Option we can't issue a refund.
Cheers
Erik Boucher
So much there to be pissed about. What does the bib have to do with the deferral? Why does he reference the refund option? I wasn't asking for a refund. Overall, I was a bit stunned by the response. Additionally, I didn't sign up for the Refund Option because I didn't know I had cancer when I signed up for this thing. I felt a little angry, but I sort of moved on and didn't bother to respond back. The "Cheers" at the end also pissed me off but I sort of forgot about it.
I was telling some friends about this over this past weekend and they got outraged for me. Today I channeled their outrage and posted on the website's FB page. A few FB friends posted their support in response to my sport and I was starting to get excited about sticking it to the Race people. But as the day passed and tomorrow's next chemo round loomed, I felt my resolve dying again, which sort of bummed me out. Thankfully, writing this blog entry has filled the the fire in my belly again, so I'm passing along some information if you'd like to express your own outrage. There are several places you could do so:
- Start with Erik, the Race Director. Race Director has a very "I'm in charge" sounding title, so I'm not sure this will actually get escalated to anybody above him, but his mobile (as posted on the race site website) is 207-210-8655 and his email is erik@justgiddyup.com if you'd like to share your thoughts on his email to me.
- As I just mentioned, I was hoping to find somebody above him, thus the reason I posted on the FB page, but who knows who this page is monitored by. I have little faith this will result in something.
- Event sponsors may also be worth reaching out to. The event has the following sponsors listed:
- Merrell
- Shipyard Brewing Company
- Maine Running Company
- Portland Pie Company
- Fox 23 (did think about reaching out to them, who isn't looking for a story?)
- Others are listed here.
The old me would have been all over this like a bull dog. I could tell many a story of how I stood up for myself when I was wronged and got what I wanted in the end. It was a trait that could annoy the hell of our people but it was actually something I took pride in. The current me feels this is kind of petty but also misses the old me and wishes she could muster the energy to fight back. Well, this has been an upbeat post, no? Anyway, since I'm having a pity party, if anybody wants to speak up, I'd appreciate it.
Wednesday, May 15, 2013
Chemo, Round 1
I started to write this blog Monday afternoon when I got home from my first treatment. Here were my thoughts then:
That was it? Don't get me wrong, I'm not full of energy, but I don't feel that bad. We'll see how the rest of the week goes, but so far I'd say I feel like I was told I'd feel--kind of run down, easily tired, like I have the flu. Man am I glad that first treatment is over. Now just 15 days more (not including today) and I'll be on target to lose my hair. That feels like the final big hurdle. I mean, yeah, I still have surgery, and then more chemo and then radiation, but all that feels doable now.
Two days later:
Holy shit this sucks. Boy was I naive. In hindsight, my chemo nurse said it would be like morning sickness. I HATED morning sickness. I had it with both Belle and Addie. But with Addie, I had morning sickness pretty much the whole pregnancy. Also, the anti-nausea drugs? A scam. Let's just say I'm ready to explore Plan B for the next round. Those who have made offers, for, uh, "herbal remedies"? I'll be in touch.
But today is Wednesday (I think) and I got out of my PJs today. I felt like death this morning, but now I feel better. I do honestly think that despite this morning, I feel better today than I did yesterday. The hardest part is admitting that I DO feel like crap and I'm exhausted and I can't help Aaron with the girls in the morning. Or at night. Because I love spending time with my girls (and Aaron too). But I just don't have it in me right now and that's really hard to admit. I can't wait to feel better because I feel like an invalid and I'm not a very good patient.
On the plus side, the meals have been awesome! I'm sooo glad that my friends set up that Helping Hands site because it has truly been a lifesaver. And work has been a really good distraction, too. Yes, I have mustered the strength to work.
Despite how I'm feeling now, I am still glad that at least it's started. Because I do feel like a lot of the anxiety I had pre-chemo has gone away. Even some of my anxiety about losing my hair has gone away too, but that could just be the Ativan talking. I did go a little crazy buying scarves the other day.
Anyhoo, that's all for now.
That was it? Don't get me wrong, I'm not full of energy, but I don't feel that bad. We'll see how the rest of the week goes, but so far I'd say I feel like I was told I'd feel--kind of run down, easily tired, like I have the flu. Man am I glad that first treatment is over. Now just 15 days more (not including today) and I'll be on target to lose my hair. That feels like the final big hurdle. I mean, yeah, I still have surgery, and then more chemo and then radiation, but all that feels doable now.
Two days later:
Holy shit this sucks. Boy was I naive. In hindsight, my chemo nurse said it would be like morning sickness. I HATED morning sickness. I had it with both Belle and Addie. But with Addie, I had morning sickness pretty much the whole pregnancy. Also, the anti-nausea drugs? A scam. Let's just say I'm ready to explore Plan B for the next round. Those who have made offers, for, uh, "herbal remedies"? I'll be in touch.
But today is Wednesday (I think) and I got out of my PJs today. I felt like death this morning, but now I feel better. I do honestly think that despite this morning, I feel better today than I did yesterday. The hardest part is admitting that I DO feel like crap and I'm exhausted and I can't help Aaron with the girls in the morning. Or at night. Because I love spending time with my girls (and Aaron too). But I just don't have it in me right now and that's really hard to admit. I can't wait to feel better because I feel like an invalid and I'm not a very good patient.
On the plus side, the meals have been awesome! I'm sooo glad that my friends set up that Helping Hands site because it has truly been a lifesaver. And work has been a really good distraction, too. Yes, I have mustered the strength to work.
Despite how I'm feeling now, I am still glad that at least it's started. Because I do feel like a lot of the anxiety I had pre-chemo has gone away. Even some of my anxiety about losing my hair has gone away too, but that could just be the Ativan talking. I did go a little crazy buying scarves the other day.
Anyhoo, that's all for now.
Sunday, May 12, 2013
Anger Management
One of the things that has surprised me during this whole thing is I don't feel angry about my diagnosis. However, I'm starting to think that I'm angrier than I think and it's coming out in different and not entirely rational ways. And you know what? I don't really care. Here are some examples:
See you on the other side...
- Last Saturday Aaron and I were rear-ended. Both our car and the car of the guy that hit us were totaled (no, I can't make this up, it's real) I was so pissed and Aaron had to restrain me (not physically, but verbally). Thankfully the girls weren't with us or I was concerned that I might have been arrested for assault. So Aaron's been dealing with getting us a new car this week.
- A week or two ago I randomly heard from an old friend (let's call her Person B) that had heard about my blog. It was nice to hear from her, but I knew she wasn't on FB and I hadn't told her myself, so I asked her how she knew. Somebody else that I used to be friends with (and who I'm connected to on FB, let's call her Person A) had sent her the link to my blog. That was strange because Person A has yet to actually reach out to me herself. So...you're sending around my blog and passing on my news but you can't be bothered to reach out to me on your own? I just find that weird. And yeah, it pisses me off.
- Here's something else that makes me angry: people discouraging or judging me because I want to continue my daily activities. Yes, I'm working during chemo. Plenty of people do it, it's the craziest thing. Yes, I'd like to work out during chemo, too. Who are you to say that I'll be too tired? You clearly underestimate me and have no idea what I'm capable of. Of course, in many ways, it's these people that motivate me even more. DON'T tell me what I can or can't do.
See you on the other side...
Thursday, May 9, 2013
Want to help? Here's how!
Many of you have expressed interest in dropping off food, rides, babysitting, etc. My fantastic friends Erin, Jodi and Eliza (the latter also my SIL) have set up a site for me on Lotsa Helping Hands. Here's the link if you're interested in signing up for something or staying posted on ways you can help:
https://mycancercircle.lotsahelpinghands.com/c/704261/join/
I know my chemo days but I don't know the exact schedule yet. Once that's nailed down I'll any needed rides up there. Thanks in advance!
https://mycancercircle.lotsahelpinghands.com/c/704261/join/
I know my chemo days but I don't know the exact schedule yet. Once that's nailed down I'll any needed rides up there. Thanks in advance!
Friday, May 3, 2013
Updates and musings. With music!
This is a bit of a stream of consciousness post. I encourage musical accompaniment while you read. Here are some suggestions:
or this
or this (as an aside, I couldn't find the original video on YouTube, but I encourage you to view it here: http://www.dailymotion.com/video/x2590a_george-michael-aretha-franklin-i-kn_music#.UYTuqMr21qI)
Or insert your own.
A fair amount of people have told me that I have a great attitude and that I seem very upbeat. (As an aside, this can feel patronizing at times but I know that's not the intent.) This comes from a few different places:
I had a great time yesterday afternoon with my sister-in-law Eliza trying on wigs (thanks again, Eliza!). Honestly, that went better than I thought. I thought it was going to be more sad but I was so psyched at how good some of the wigs looked (especially the one I ultimately ordered) that I'm contemplating wearing it even when my hair grows back.
I also found out that I'm in the AC (8 week/control) group and not the experimental group. I won't lie, I was disappointed when I got that call shortly after the wig fitting, but you deal with it and move on. With all that's happened in the past month, this has certainly not been the worst day, nor has it been the worst news I've gotten. At least now the dates for everything else can start to fall into place. Also, I can go with the "experimental" group for the 2nd round of chemo post-surgery, it just won't be part of the research study. I've also received news that I can exercise on the 8-month chemo, I just can't run a marathon. I need to clarify with my oncologist if she literally means a marathon, or if she's grouping all running as "running a marathon". Because I'm still training for a 25K (15 miles). That's 11.2 miles less than a marathon if we're being technical.
Also, I've joined a young women's support group (I love that when it comes to cancer I'm young!). Listening to other women's stories made me realize that this is my new reality. My life has been altered forever, but my personality isn't going to change. One of the things I found fascinating about the group is how everybody knows the date they got their "news". It certainly isn't a date I'll forget. Heck, it's how I started off my first blog post. The fact that all of the other women did too really resonated with me.
When I had my last biopsy as part of the pre-clinical trial work up earlier this week, I had a moment where I thought, "what if when they get the results of this biopsy and the results came back negative for cancer and this has been one big, crazy mistake"? But alas, it didn't.
Some of these posts will be sad, some will be angry, but yes, I'm trying to be funny about this if I can. That's just my nature. If I can't laugh about this and try to keep as normal a life as possible, I will drown in sadness. Because it is sad, but I'm not going anywhere. I just have a new reality (did I say that already?).
Thanks all for sticking with me. I leave you with the following:
or this
or this (as an aside, I couldn't find the original video on YouTube, but I encourage you to view it here: http://www.dailymotion.com/video/x2590a_george-michael-aretha-franklin-i-kn_music#.UYTuqMr21qI)
Or insert your own.
A fair amount of people have told me that I have a great attitude and that I seem very upbeat. (As an aside, this can feel patronizing at times but I know that's not the intent.) This comes from a few different places:
- While I have had and continue to have sad moments, it's not my personality to mope about. You get bad news, you process it, you move on. I'd rather laugh about something than sit around and cry.
- Despite my diagnosis, I feel fine. So once I'm a few days removed from the hospital, it's like I can go back to my pre-cancer life. Except, of course, that I can't. But a lot of the time (mostly at work I find), I can compartmentalize and push the cancer stuff out of my mind.
I had a great time yesterday afternoon with my sister-in-law Eliza trying on wigs (thanks again, Eliza!). Honestly, that went better than I thought. I thought it was going to be more sad but I was so psyched at how good some of the wigs looked (especially the one I ultimately ordered) that I'm contemplating wearing it even when my hair grows back.
I also found out that I'm in the AC (8 week/control) group and not the experimental group. I won't lie, I was disappointed when I got that call shortly after the wig fitting, but you deal with it and move on. With all that's happened in the past month, this has certainly not been the worst day, nor has it been the worst news I've gotten. At least now the dates for everything else can start to fall into place. Also, I can go with the "experimental" group for the 2nd round of chemo post-surgery, it just won't be part of the research study. I've also received news that I can exercise on the 8-month chemo, I just can't run a marathon. I need to clarify with my oncologist if she literally means a marathon, or if she's grouping all running as "running a marathon". Because I'm still training for a 25K (15 miles). That's 11.2 miles less than a marathon if we're being technical.
Also, I've joined a young women's support group (I love that when it comes to cancer I'm young!). Listening to other women's stories made me realize that this is my new reality. My life has been altered forever, but my personality isn't going to change. One of the things I found fascinating about the group is how everybody knows the date they got their "news". It certainly isn't a date I'll forget. Heck, it's how I started off my first blog post. The fact that all of the other women did too really resonated with me.
When I had my last biopsy as part of the pre-clinical trial work up earlier this week, I had a moment where I thought, "what if when they get the results of this biopsy and the results came back negative for cancer and this has been one big, crazy mistake"? But alas, it didn't.
Some of these posts will be sad, some will be angry, but yes, I'm trying to be funny about this if I can. That's just my nature. If I can't laugh about this and try to keep as normal a life as possible, I will drown in sadness. Because it is sad, but I'm not going anywhere. I just have a new reality (did I say that already?).
Thanks all for sticking with me. I leave you with the following:
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