Tuesday, April 27, 2010

running, biking, panting, gasping, waiting, hoping for a cure

I've got a couple of races coming up. Both use the word 'cure' in their titles. The Susan G. Komen Race for the Cure is coming up in a couple of weeks and is a fundraiser for breast cancer. I will be volunteering at this event and also running a 5k. I went to this event last year and I have never been at an event so large before. There will be thousands of people and unless you finish up front (not me) you will have to walk across the finish line because it gets so crowded. When I ran this race last year, I had no idea about the cancer brewing in my breast. I was there to support my sister-in-law and get some exercise. I fear that I will be overwhelmed this year and it might be hard for me to breathe well enough to run. Not only will I be there as a survivor but it is 2 days before wondertwin's pbm. damn

The other race I'm training for is the ADA tour de cure coming up in june. This is a fundraiser to find a cure for diabetes. I will be biking (or at least attempting to) 100 miles. I have done this race once before but only did 100k. I have a lot of training to do since I usually only ride 20 miles at a time but I think I can do it. It's a big year for me and I want to do something special. Last month I celebrated 25 years of living with type 1 diabetes. That's huge. Something I never really dreamed of. Outsiders don't always understand why we are looking for a cure. They think we already found one. While it's true that diabetes is no longer an immediate death sentence, we still would like to get rid of it! It's ironic that I've always been hesitant to complain about living with diabetes because cancer overshadowed it. The week that I got out of the hospital after my diagnosis, my classmate died of leukemia. How could I possibly feel sorry for myself when I was alive? As the years went by, I did start feeling a little sorry for myself, especially as my anniversary approached each year. But then my mother died (from cancer) and since I was diagnosed on her birthday I could no longer feel sorry for myself. Instead, I thought of her, and cancer. And now I survived cancer so I think I have the right to admit the truth to myself. Cancer is awful. Yes, yes it is. But it is still ok for my diabetes self, mutant 1, to want something better. To hope for something better. It's ok to say that I wish I didn't have diabetes.

I have been waiting for the cure for many years because I was told this would happen in my life time. A cure would be outstanding but it won't bring back the 16 year-old whose body just couldn't take the constant ketoacidosis. If a certain 24 year-old can turn things around and live long enough to see a cure, it still won't return the feeling to her feet, fix her vision or reverse the damage done to her kidneys. If we are lucky enough to see this cure it won't take away the nerve damage in my sister's stomach that has left her with gastroparesis, a potentially life-threatening complication. It may be too late for some of us and some of our complications, but this disease is like brca in that it is hereditary. So we dream of the day we stamp this out and none of our loved ones have to deal with it.

Seeing as this is my 25th anniversary, I am concentrating my fundraising on the bike ride this year rather than the breast cancer race. Here is a link to my fundraising page if you would like to drop a dime or two. Mutant 1 thanks you:)

Wednesday, April 21, 2010

play on

I was surprised to read that a musician I like, Guru, died this week after a year-long battle against multiple myeloma. I had just pulled out his album, Jazzmatazz this past weekend and listened to it. It is a favorite in my collection. I have to admit that I can never remember his name so I file the cd under j for jazzmatazz. I didn't even know that he has several volumes of Jazzmatazz so I am eager to check out the rest of them. His music is a mix of jazz and hip hop and is perfect to listen to when chilling on the porch or poolside.

Here is a link to one of his songs, When You're Near.

I have to thank my brother for introducing me to Guru. I first listened to the cd here in utah either on my stopover when I was moving to cali or on a subsequent visit. It was one of several cds in my brother's car and once I slipped it in the player, I was in love. Later I asked him who that was again because I wanted to buy it and he sent me a copy for my birthday. Ever since I can remember, my brother has loved music and books. You could often find him laying on the floor, reading with headphones on. He doesn't just stick to one genre and often introduces new music to me. He introduced me to rap when he gave me a run-dmc tape that he was through with back in the 80's and they have been my favorite group ever since and rap/hip-hop remains my favorite genre to this day. Not surprisingly, my brother is now a librarian and he gets to select the music holdings at his branch!

When faced with death, one wonders what impact has their life had on others. Will I be remembered? Have I done anything worthwhile for others? What was my purpose in life? When a musician dies, they leave a lot behind. I listen to dead rappers everyday...tupac, biggie smalls, jam master jay, dolla. Their music still grabs me, makes me dance, sing, laugh, cry, relate, shake, rattle and roll. Long live Guru.

Sunday, April 11, 2010

outplay, outwit, outlast

After another great day on the slopes I was too tired and sore to sleep so spent some time tonight catching up on one of my shows, survivor. For those of you who may not watch tv, this show has nothing to do with cancer! It is about living with a bunch of smelly strangers for 30 days with little food, water or comfort and trying to get them to vote you the winner in the end so you can go home with a million bucks along with all your bug bites.

I readily admit that I love tv and I don't see anything wrong with that. Last year at this time, I applied for a job at an outdoorsy company that stated on their website something to the effect that if you love tv don't bother working there. What? Whatever. I am an active person that uses most of the shit they sell but I also find some time to watch tv. My cell phone even has a tv on it, although I'm not paying for that service at the moment. Are you going to tell me not to read? Because that is more of a time drain for me than tv. I try not to get too many books out of the library because while a tv show won't stop me from going outside and enjoying good weather, a book might. I can't put down a good book until I finish it. Sorry dog, you're going to have to hold it. Ever since I could read I've snuck a book and a flashlight into bed with me. Does that mean I shouldn't work for your company because I don't spend every free minute trying to climb the highest mountain? I enjoy stretching out on the couch and taking in some entertainment and encourage everyone to try it once in awhile!

Back to survivor: For those of you who do watch the show, man, who else thinks this is the best season yet?! I mean, I haven't watched every season but this one is my favorite so far. So much conniving amongst just about all the survivors, except maybe poor old coach. He just doesn't get that it is just a game! And the battles between the villains and heroes are fierce. Hard to tell who the real 'villians' are! Loved that last challenge in the mud. Rupert was priceless with his mud beard. They could make a tide commercial from that episode.

As much as I enjoy the show and like camping and am good at sports and would love to try some of the challenges and am good at lying, I wouldn't want to be on the show. For one thing, I'm pretty bitchy when I'm tired and they don't get a lot of sleep. I'm also bitchy when I'm hungry and they don't eat a lot. I also would hate to be outside all day without my sunscreen. And you hardly see any of them wearing glasses so some of them must be wearing contacts, yet how do they take care of them? You never see them with a bar of soap so how could they possibly be putting their contacts in every day? And what do the women do with their tampons? (not that I have to worry about that anymore) They don't have toilets or garbage cans out there.

But the number one reason I wouldn't want to be on the show is the water. They just don't have enough of it. Last season they showed russell dumping out people's canteens of water in the middle of the night because he wanted to create some trouble. I wouldn't dump them out. I would be sneaking drinks from them. I love to drink. I live to drink. Not just when my blood is sweet, but anytime. Don't mess with my 32oz nalgene. I bring it with me most places, unless I'm toting my 70oz camelbak. You should see me at work! During my 10 1|2 hour shift I down one nalgene of iced tea then refill it twice with water, have a 12oz can of carbonated flavored water, 8oz of joint juice and a 20oz diet pop. Ahh, the soda at work! My workplace has the best soda machines that carry almost everything. As someone that drinks diet soda, I'm usually limited to one or two choices at best. But my workplace carries diet coke, diet coke with lime, coke zero, diet pepsi, diet mountain dew, diet sunkist, diet dr pepper and diet sprite. It's like I've died and gone to heaven!

So who do you think is going to win survivor? Russell has made some pretty good moves so far! I'm sure boston rob is pretty pissed he got outplayed by him. And he sure pulled one over on tyson.

Friday, April 9, 2010

WWLS

WWLS - what would L say? L is my breast cancer social worker. I have seen her 2 or 3 times on my own and twice with dw. I started seeing her because I had convinced myself that the pbm was the best choice for me but I was too scared to go through with it. L is not there to tell me if I'm making the right or wrong choice. There are no right or wrong choices as my survival rate is pretty much the same with or without surgery. L helps me talk through my reasoning and guides me towards the finish line of this brca journey. Well.. she helps me with more than just the brca stuff because now whenever I have an issue playing out her voice pops in my head and I start reasoning through things.

Ever since my hyst/ooph I have been second guessing my choice of cutting the bitches off. I was so ready to do it and when my surgery date was cancelled, I felt destroyed. So I went ahead with my other surgery in the meantime. And while I was waiting in pre-op (for a very long time) I felt so relieved that I wasn't there for the pbm. That's when I started the second guessing. And then of course, I had to go through the many weeks of recovery. All in all, recovery is really not that awful but I hate it just the same. I hate the interruption in my life and I'm really not looking forward to doing it all over again. Now that my recovery is just about over I feel ready to move on. I've got plans stacked up for May, I want to find a permanent job, go to school, hit moab hard with the bike this summer, etc. None of this moving on includes more surgery or time for it.

So WWLS? I don't want to go see L right now because I know what she would say. We would talk about my original decision and why I made that choice. And we would discuss if any of that reasoning has changed. And I would have to admit that no, none of it has changed. I still don't want to risk getting a recurrence or a new bc that might require chemo or lymph node involvement. I still don't want to go through with radiation. I still don't want to risk getting mets. If anything, I have more reasons to go through with the surgery now. My maximum out of pocket expense has almost been reached for this year, so financially it would make sense to do it soon. I have a big lump in my boob from the lumpectomy that will probably not go away at this point. I am nervous about going in for my next mammo as it seems like it would just pop or at the very least, hurt a lot. It does hurt a little just from touching it. Surgery would give me a lumpless new boob. Another reason for surgery is that I wouldn't need to get another mri. I'm still working on getting the last one paid for from 7 months ago. I don't need that stress in my life.

I tell myself that I decided to do the pbm because after reading the message boards I came to the conclusion that most people practice surveillance and then choose surgery when they reached a certain age. Well, I was definitely in that age group where everyone was/did have surgery by. Maybe my choice was based on fear! Ha, not. See reasoning above. I made a sound choice, I just don't want to stick to it. And I have to keep in mind my family history - which sucks. I could very well get more bc.

It's almost like I'm back to square one. I have chosen the pbm but am too scared to do it. At the same time, it is not square one. I am so much better now. I'm not depressed, I'm living life and enjoying it and moving forward. I don't cry all the time and when I do it's just little tears popping into my eyes instead of the heart-wrenching tears of yesterday. I'm not going to see L right now. I want to live in my little fantasy world (where I'm normal again) for a little while longer. I plan on getting my mammo in june, talking to my breast doc afterwards and moving on from there. If there is one thing that I've always known about myself it's that I can do anything I set my mind to. So when I'm ready, I know that I can do it. This whole brca life is fucked up, but I can do it.

Wednesday, April 7, 2010

everybody's doing it

Seems like everyone these days has cancer. Martina Navratilova is the latest to face breast cancer. Click on this link and watch her clip with Robin Roberts (another bc survivor). She talks about the importance of getting your yearly mammo as well as how this has affected her. I love Martina and grew up watching her many battles against Chris Evert. She said she cried when she found out. It's ok Martina, we all cry.

When I was going through my own biopsy last summer, actress Maura Tierney (Abby Lockhart on the show ER) had just been diagnosed with breast cancer and was undergoing surgery. She was supposed to be on the new show Parenthood but dropped out to deal with cancer. She just announced that she is returning to work on the show Rescue Me. You go girl


Monday, April 5, 2010

menopause update: week 9

I'm starting to lose track of how long it's been since my surgery, so this could very well be my last surgery update. Yeah! Guess that means I'm almost back to 'normal.'

I had some brain damage moments between week 4 and about week 7. As I mentioned before, I accidentally left my contact lenses on all night, probably for the first time in 25 years. I also left a burner on the stove, left the water running in the sink, couldn't remember the name of the apple mp3 player (ipod), couldn't remember how to find the bathroom in the dark then couldn't find my way out in the dark, had trouble finding my way to the cancer big house and my hospital - places I've been to millions of times, forgot to get off at my exit and didn't realize it until I passed two more exits. And who knows what else I screwed up. I mentioned my brain problems to my nurse practitioner at my 6 week visit and she smiled at me and said that's what happens as we get older. (Then she qualified it and said that if I start losing track of days and have a change in vision then I should see my pcp and probably get an mri. What? I don't have a brain tumor)! I said my symptoms just started after surgery so couldn't it be from a lack of estrogen? We discussed it a bit and she said that it is possible. People do start losing some brain function as they age and that is usually when they start losing estrogen. So what to do? Well, guess you could try taking some estrogen but they also say (and this applies to the old folks as well) 'use it or lose it.' Your brain gets stronger by introducing new things, experiences, jobs, stimulation, etc. And of course get the proper amount of sleep and eat right. I did start working around week 4 and after months of moping around the house doing nothing, it appears that my brain is making a come back. I haven't gotten lost in awhile and haven't done anything really stupid that I can think of in the last couple of weeks so I think my brain farts were just temporary.

I haven't bothered trying to figure out what triggers my hot flashes because they haven't been that bad so it isn't worth the trouble and I don't want to give up anything that I'm eating or drinking anyway! So really all I do is make sure I dress right for the weather and take my jacket off inside stores when I'm shopping so I don't start heating up. I bought a cute little desk fan at target for $6 and have it at work and it stops the flashes right away. Once in awhile I feel something that I've heard people describe as a hot flush. As opposed to the flash where my face feels hot and tight, the flush is kind of neat. All of a sudden you feel this huge warmth inside you and it just kind of flows right out of you in seconds. Kind of like drinking a shot of vodka, a little warmth burning in your gut.

I think that wraps it up for my menopause symptoms. Haven't noticed anything else going on. So just trying to get back to my regular workout routine prior to surgery. I haven't started running yet or doing crunches or lifting much. I have gone snowboarding a few times with fabulous results but just haven't been able to get back to the gym. That's a work problem, not a surgery problem at this point. Just don't have the energy after working 10 1/2 hours to go to the gym. I have to hand it to dw. She is gone at work for 14 hours, is taking 2 graduate classes and still goes to the gym after work. She is a superwoman!