There’s a certain responsibility in writing a blog and I’ve been adequate, at best, on that front. As I sit here trying to find a way to easily cradle my MacBook while composing this drivel I am thinking of what I should be writing and what would be relevant and of interest to the few people that do actually read my updates. I’ve been trying to get myself more organized and find that my chemo brain has been retreating, though I still have (many) senior moments. So while I’m taking a shower, going to the bathroom, riding the bus, pretty much any location where your mind can wander, I start to think of what I’m going to post in my blog. Some people sing tunes in their head, I compose my blog – well, I sing tunes too but always off key and the voices complain!
My issue then becomes remembering the important comments you’ve practiced so that you can update that post forthwith! And as you maintain that extremely important thought you venture to your iPhone or iPad or iMac or anywhere you can update your Reminders. And then you see the email come in about the kids rugby that weekend or the scouts event coming up or the new stuff on sale today at NewEgg. You finally get through all that and realize you’ve forgotten what you wanted to update. Suffice it to say, I’ve solved the world’s problems, answered the questions of all time (indeed, it is 42) but have not yet found a cure for cancer. However, since I can’t remember something from one side of the room to the other, these answers, heck, even the questions, are lost in another dimension. So it’s good luck I didn’t figure out the cancer thing as that would really piss me off!
I am continuously thankful for the easy time I’ve had of the entire process. I know many have said that I am an inspiration or courageous or any number of similar thoughts but to me it’s just been lucky. I’ve not had many issues, I’ve taken well to the drugs and I have wonderful support and fantastic insurance. So for me to be ‘courageous’ and and ‘inspiration’ it’s easy. I just feel awkward trying to take credit for any of it. I will say you have to have the “half full” attitude or it will just get distressing. You also learn to pick your discussions or arguments. Yesterday I was late heading to church and my wife/kids left first. The elevator had a neighbor when the doors opened on 11. We don’t talk often but it’s a polite ‘hello’ or ‘my, the kids have grown’. I happened to have ‘trimmed’ my hair that day, at a 5 nonetheless – it’s getting there! My ‘trim’ was really just cleaning up loose hair that’s grown longer than the rest – I will look like I painted on my hair – not even a chia pet! As luck would have it, my neighbor made a comment. Something to the effect of, “making sure you don’t need another hair cut for the rest of the summer?” I passed it off with a quick, “yeah, it’s starting to come back,” implying without detailing my situation. He then continued to make another comment or two. I gave up trying to do more than just nod my head and say yes!
This didn’t upset me as he doesn’t know – how can he? I just didn’t feel like going through the process of explaining the answer. I mean we only had 11 floors! It does highlight the question, “what do you do, as a patient, with respect to discussions of you and your disease in public?” The answer is quite simple, “whatever the hell you want”. I’m not an advocate of telling the world to PissOff and not talking to anyone but some people are. I don’t think it’s healthy but I don’t know your situation and am not about to try and tell you what to do. Personally, I find it more awkward to not talk about it and even worse to try and not talk about it to help make someone else more comfortable. It’s like telling a small lie – the more you try and cover it the bigger the lie gets. The more you talk around the issue the more the issue becomes a – wait for it – “issue”. It’s akin to a band-aid – just tear it off and get it over with. I sat in the pantry in my building while someone just continued to dig themselves into a hole:
person: “wow, umm, have you been swimming alot recently?”
me: “no, but it is coming back.”
person: “I had a friend that used to shave their head to be faster swimming”
me: (seriously?!?) “yeah, I had some friends like that but that’s not what’s going on with me”
person: “yeah, understand, well, I need to get going…” (look at the time!)
There have been other, similar times, where I’ve just come out and said, “no, just got back from my stem cell transplant” (and boy are my genes TIRED!) In my eyes, straight and to the point is best. People feel VERY awkward, but only for the first few minutes, then it’s back to normal as they realize it doesn’t really bother you and you don’t want the pity party. I had another circumstance, literally within two days of returning to work:
person: “How have you been?”
me: “Doing well, back a few days now and everything seems to be fine. Still fighting a bit with the neuropathy but all in all, doing well.”
person: – pregnant pause – “…great…”
me: “You have no clue what I’m talking about, do you?”
There was an awkward moment and pregnant pause but other than that the issue was dealt with. The last time I lost my hair it was awkward and I really didn’t take any pictures of me, just my head. I found it more difficult to not say things. This is one of the reasons I found myself Promoting Global Hair Loss and being so open and up front about the entire process. Again, I appreciate your thoughts about me being an ‘inspiration’ or ‘courageous’ but the stark truth is it’s easier for me!
I will throw in one last push for PGHL. Although my event is long past (and my thank you notes STILL not sent) my board is still up and still accepting donations for The MMRF! So pass that along to your friends – we’re just shy of $60,000!
With all this verbal spew I am going to consider myself done for the moment. Again, I’ll apologize for the lack of updates but with baseball and rugby season coming to a close, ballet and piano recitals and a wedding I’ve just been damned busy! Heck, I almost forgot Mother’s Day entirely (and forgot about Father’s day until Sat night!)
So that’s my update, that’s my story – and I’m stickin’ to it!