It's 0130 and I should have been in bed about 4-5 hours ago. The Pinewood Derby is over an my son did a great job not getting upset as he didn't walk away with the big hardware though he did get the Best Looking in his den. As I have the last three years, I was the MC for the event only because I can and I enjoy it. Hell, I used to do it all the time in front of adults (granted, drunk adults, but adults all the same). But now it's well past my bed time and I poured that glass of grappa like it was a glass of water so I'm up and thinking well beyond the legal limit!
I've not really told the Cub Scout crew (some of the parents know but not all) about what I'm going through and the fact that I will have extremely short hair in the next week and a half and be absolutely bald in the next six weeks. But the few that know definitely came over to "check in" today and I had one that came close to breaking down (god bless her heart!) I'm fine right now but after Jan 28 I'll be a mess for a few weeks, but I expect to be fine then (just a lot colder on top, where I used to have a head of hair!) But talking with my folks afterwards, it's tough to gauge how to react? I don't have any qualms talking about what I'm going through. As witnessed at today's Pinewood Derby, I can talk for more than three hours straight (without a bathroom break I might add!) But how do you initiate the conversation? I actually WANT to talk about it - I want you to know - I want you to not be worried as I know I'm going to pull through this with flying colors! I have no doubt of that.
However, as the old saying goes, you don't mention politics, religion or the C word (and not see you next Tuesday!) The world has changed and the C word carries multiple different meanings, some of which are really bad. But at the end of the day, too many people don't know or understand the difference and difficulties between the various types of cancers that could occur. Leukemia/Lymphoma are really bad, but if you get into complete remission for five years you have a good chance of not having to deal with it ever again. Pancreatic can be a term of months (enough about that). There's no cure for my disease. There is a ton of research and a lot of things going on that point towards great strides related to my disease or similar diseases that can mean good things for me. But at the end of the day, unless you've dealt with it directly (and I mean directly) you probably don't know much and therefore assume the worst!
I'm not worried. I'm going to get through this, with bells on! And I don't mind talking about it - to anyone! With that being said, I promised myself that the next time I lost my hair it wouldn't be in vain. So if I come asking for money (not for me, but in this case, the MMRF) then realize that I'm doing so because I want to take action, raise money and finance the groups that I think may actually find a cure! However, I don't want you to feel pressured. Going back to the scout group - I consider myself lucky, with the roof over my head, the job that offers great benefits and the kids that drive me crazy. And I know there aren't a lot of people that can claim the same level of comfort. I don't want you to donate as you feel you have to. I also don't want you to feel guilty if you don't. I have an issue and it's MY issue. There are a lot of people that I know that have the same issue (disease-wise) but it's still their issue). But everyone has their own issues and priorities.
And people come up and thank me for MC'ing the event today, especially with "what's going on". As much as I appreciate that, I do what I did today for two reasons: 1) I'm a vain, self absorbed ass that enjoys having a mic and talking out loud (please read that line as a joke!) and 2) I want to set an example for my son and daughter on how you can give back. I enjoy doing it and I enjoy making sure the kids have fun at an event where, during their race they are having a grand time but for the hour between that race and their next race they're trying to keep themselves entertained! I had a young boy ask me, after the race, when I finally got to use the pisser, while washing hands, "hey - aren't you the guy doing all the talking?" I said yes and he responded, "what...do you work here"? I said no and he said, "you must make a lot of money doing this otherwise, unless your volunteering or something". He left so I couldn't respond. But with him, and a few of the boys and parents coming to say thanks...it's difficult. How should I react? Where I understand you're saying thanks for helping make it an enjoyable night I don't think I can get you to realize that YOU"RE making it an enjoyable night by listening to me!
Sure, I got a load of issues right now. For the moment, I'm fine. I don't feel sick and don't expect to feel sick. But I have the c-word - most definitely. But i'll be rocked come the end of Jan, start of Feb...then I'll be bad off - but only for a short while. After that, I'll be back up in front of the kids, sporting a shiny pate and making jokes about it. I do it cause I like to - it brings me joy. But if the idea, the thought, the process, rubs off on a few kids to say, "that glass is half full", then I feel I've been a benefit as well!
What's the right way to react? Whatever way feels right. If it don't feel right then it's most likely NOT right! I do these things for me, for my kids and for my friends. I've got a platefull of crap right now and I can stare at that or can press forward and deal with the 'control-ables'. For me, that feels like a better use of my time.
As always, thanks for listening and if you ever need an MC just get me a mic!
Cheers...Bill
I've not really told the Cub Scout crew (some of the parents know but not all) about what I'm going through and the fact that I will have extremely short hair in the next week and a half and be absolutely bald in the next six weeks. But the few that know definitely came over to "check in" today and I had one that came close to breaking down (god bless her heart!) I'm fine right now but after Jan 28 I'll be a mess for a few weeks, but I expect to be fine then (just a lot colder on top, where I used to have a head of hair!) But talking with my folks afterwards, it's tough to gauge how to react? I don't have any qualms talking about what I'm going through. As witnessed at today's Pinewood Derby, I can talk for more than three hours straight (without a bathroom break I might add!) But how do you initiate the conversation? I actually WANT to talk about it - I want you to know - I want you to not be worried as I know I'm going to pull through this with flying colors! I have no doubt of that.
However, as the old saying goes, you don't mention politics, religion or the C word (and not see you next Tuesday!) The world has changed and the C word carries multiple different meanings, some of which are really bad. But at the end of the day, too many people don't know or understand the difference and difficulties between the various types of cancers that could occur. Leukemia/Lymphoma are really bad, but if you get into complete remission for five years you have a good chance of not having to deal with it ever again. Pancreatic can be a term of months (enough about that). There's no cure for my disease. There is a ton of research and a lot of things going on that point towards great strides related to my disease or similar diseases that can mean good things for me. But at the end of the day, unless you've dealt with it directly (and I mean directly) you probably don't know much and therefore assume the worst!
I'm not worried. I'm going to get through this, with bells on! And I don't mind talking about it - to anyone! With that being said, I promised myself that the next time I lost my hair it wouldn't be in vain. So if I come asking for money (not for me, but in this case, the MMRF) then realize that I'm doing so because I want to take action, raise money and finance the groups that I think may actually find a cure! However, I don't want you to feel pressured. Going back to the scout group - I consider myself lucky, with the roof over my head, the job that offers great benefits and the kids that drive me crazy. And I know there aren't a lot of people that can claim the same level of comfort. I don't want you to donate as you feel you have to. I also don't want you to feel guilty if you don't. I have an issue and it's MY issue. There are a lot of people that I know that have the same issue (disease-wise) but it's still their issue). But everyone has their own issues and priorities.
And people come up and thank me for MC'ing the event today, especially with "what's going on". As much as I appreciate that, I do what I did today for two reasons: 1) I'm a vain, self absorbed ass that enjoys having a mic and talking out loud (please read that line as a joke!) and 2) I want to set an example for my son and daughter on how you can give back. I enjoy doing it and I enjoy making sure the kids have fun at an event where, during their race they are having a grand time but for the hour between that race and their next race they're trying to keep themselves entertained! I had a young boy ask me, after the race, when I finally got to use the pisser, while washing hands, "hey - aren't you the guy doing all the talking?" I said yes and he responded, "what...do you work here"? I said no and he said, "you must make a lot of money doing this otherwise, unless your volunteering or something". He left so I couldn't respond. But with him, and a few of the boys and parents coming to say thanks...it's difficult. How should I react? Where I understand you're saying thanks for helping make it an enjoyable night I don't think I can get you to realize that YOU"RE making it an enjoyable night by listening to me!
Sure, I got a load of issues right now. For the moment, I'm fine. I don't feel sick and don't expect to feel sick. But I have the c-word - most definitely. But i'll be rocked come the end of Jan, start of Feb...then I'll be bad off - but only for a short while. After that, I'll be back up in front of the kids, sporting a shiny pate and making jokes about it. I do it cause I like to - it brings me joy. But if the idea, the thought, the process, rubs off on a few kids to say, "that glass is half full", then I feel I've been a benefit as well!
What's the right way to react? Whatever way feels right. If it don't feel right then it's most likely NOT right! I do these things for me, for my kids and for my friends. I've got a platefull of crap right now and I can stare at that or can press forward and deal with the 'control-ables'. For me, that feels like a better use of my time.
As always, thanks for listening and if you ever need an MC just get me a mic!
Cheers...Bill
4 comments:
Eureka! I have found the cause of myeloma. It's all the talking you lot do! Mike and I met up with another lady diagnosed with mm recently and the hour over coffee turned into three which would have been more but I had to get back to turn off the oven!
They should rename it talkoma!
Lorna - you better be careful or Mike and I may just start talking to you after all! :)
Hi,
I have a quick question about your blog, would you mind emailing me when you get a chance?
Thanks,
Cameron
Hey Cameron - apologies for the delay in responding. What's the best way to reach you?
tx...bill
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