So yesterday was the big I'm Too Young For This event put on by the Wellness Community. I guess there were about 70 people in attendance, but it wasn't what I expected. It was definitely good to meet other people that had gone thru some similar things that I did but I felt like I didn't get the opportunity to meet everyone and wish I did. I also wish I got to find out what everyone had/has for cancer so I could find people with the same cancer as me. It's not like you could just go up to everyone and say "Hey what cancer do you have" even though I did do that to a few people. It was more of an "educational" event and I was really waiting for the social aspect of it, I just felt like there wasn't enough time. I also kinda wish I brought someone with me to it. I'd say about half of the people brought someone with them. Now I know for next year, bring a friend :)
Another thing the event made me realize is how much my hospital (New England Medical Center) is lacking in resources compared to Mass General and Dana Farber. For instance, MGH offers massages and acupuncture in the infusion center while people are getting chemo. I learned that acupuncture can help your body recover faster from chemo - so instead of feeling like crap for a week it can cut down to a few days! I would try anything to feel better sooner! I mean I used to feel better by Thursday, then it was Friday and now it's Saturday or sometimes not until Wednesday before chemo! Another thing that both places offer is support groups - which is huge - they even include a young adults group. I kinda feel like I was told I had cancer and then was just supposed to mostly deal with it on my own. I mean I think I'm getting really good care at NEMC, don't get me wrong, but they just don't offer the extras.
Another thing I realized -- I really don't want to get radiation. I met a guy that had a brain tumor 15 years ago and got radiation to shrink/get rid of the tumor. Because he got the radiation he ended up with tongue cancer and had to have 8 surgeries! When I met Dr. Fisher at Dana Farber (he's supposedly like the "lymphoma guy") he told me he would prefer that I didn't get radiation because it can cause breast cancer and lung cancer later on in patients... me and my dad were shocked! I said I don't want to get cancer now and then get it again later on - if I'm going to lose my hair I'm only doing it once! So I believe that since I'm now doing chemo for 6 months (instead of 4) that the plan is to avoid radiation and I'm okay with that. I think I'm going to make another appointment with Fisher soon as a follow up. I only met him once as a second opinion. I was also feeling like crap when I met him as it was right after my first chemo and I didn't know how constipated you get - or even what being constipated feels like, until that day - yikes.
So I'm going to look into trying out acupuncture and possibly also working with folks from the wellness community to try and get young people more involved there. It's like this big cycle, they said they have temporarily stopped offering the young adults support group because no one would go, and yet a bunch of young adults said they want to go to support groups and can't find them....but yet people don't go to their meetings.... doesn't make sense!
On another note, my hair is hurting a lot lately. It's driving me nuts. I was just feeling good about it the other day and thinking it might last, and then it started hurting like crazy. I did, however, get asked yesterday if I was wearing a wig which was nice. My part of my hair is getting really thin. I need to find a hat or bandanna or something to wear often so I can stop washing my hair and touching it in general. It's getting warmer and sunnier out lately, and I don't want to have to put sunblock on my part! It's so depressing. I don't feel like I look like me at all lately. It's getting really depressing with the whole weight gain thing. Nothing fits me. Today I was at Target and I actually bought a big mens t-shirt because I knew it would fit me comfortably, so depressing. Hmmmph. If anyone has any suggestions on places for me to buy cool bandannas (especially comfy ones) or hats (but I look terrible in 99% of them) please let me know -- I'm thinking about just going to a fabric store and kinda making bandannas.... I think that would work...we will see.
I'm at my apartment this weekend. I'm heading back to my parents house in a few hours. I love my apartment, I really do, but I kinda hate being here lately. It's really depressing and makes me think of only being sick. The air is also really dry in here and I can never do enough to make it comfortable - I have a humidifier, but it's like I need 10 running at once. It's just weird to be here. I miss being normal and going to work and going out and doing karaoke with everyone. I really hope that I'm done with cancer this summer and done for good!
Sunday, April 1, 2007
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Hi Kelly, just thought I would look in on you before we head off to Wales.
About the radiotherapy there is a good chance that Chris will not be having it either as he is on a trial, where he will hav a pet scan and then a 50-50 chance of not having it.
His Lymphoma expert is Proff Radford and if you go on Lymphoma association linked from his blog there is a video with him discussing Hodgkins.
Have a good Easter!!
Hi Kelly, Just wanted to say hello and wish you well. I'm Chris and Vicky's sister in law. They told me to check your blog out. Your a little further on in treatment than Chris and your information is a huge help so they know what to expect. Keep up the good work and keep smiling :)
Take care from us in the UK
Hi, my name is Morgan. I'm a 22 gal with Hodgkins. I'm going to have a bone marrow transplant in the next few days. I just found your blog through I'm2young4this. It'll give me some reading material during my hospital stay.
I met you at the "I'm Too Young for This" seminar on Saturday. I'm not a patient, but I work at Dana Farber.
I think your blog is a great outlet and love the way you write. You should definitely continue to write throughout your treatment...
I say, choose the men's large t-shirt! At lunch you and I discussed that you have the rest of your life to look fabulous, right now you just have to take care of yourself and do what makes you feel comfortable.
It was great meeting you. I'll continue to check in on your blog.
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