Ringing my Bell!

Well, it's finally over with. I finished Radiation on Friday. My skin feels like I have the worst sunburn ever, and under my arm is so swollen it's hard to actually find a comfortable way to sleep, but as far as my cancer battle plan... the worst is over with. I have an appointment to go to the UNC cancer hospital for a consultation the first week of June. We are getting a second opinion there on our next course of action. The possibilities are taking Tykerb (a chemo pill) or the new treatment, scheduled to be approved on June 8th, or who knows. My oncologist is gung-ho for me to have a second set of eyes look at my records to see what will be the best way to keep me in remission for as long as possible. I am glad she is not one of those doctors who thinks she knows all the answers, but instead she is the type who wants some extra eyes looking for a solution.

I got to ring the bell (a tradition at the hospital... you ring the bell in the hall when you are done) and it was very emotional for me. They gave me a certificate, some mardi gras beads and a pin that says "survivor". I went in that day not wanting to do it... ring the bell, that is. I just wanted to get radiated and go home. Part of me is kinda superstitious about things like that. I think I was afraid to ring my bell and say I am done, only to have to go back and do it again. Like when you say something and then knock on wood. In the back of my head is this voice constantly telling me to never say things like it's gone, or that I am in remission because the way my luck runs... well... you know... I just keep expecting to hear more bad news. Funny thing is that I am okay with it. The knowledge that it is only remission and not a cure means that I am sort of free. I can let small stuff go. After all, why get worked up about anything at this point... I am terminally ill and really... what is anything compared to that?

But back to the being emotional thing... I sat in the car and cried a little. Not a lot. I really haven't cried a lot since the day I was diagnosed. In fact, I think I have cried less since I was diagnosed than I did before I had cancer. But I did cry a little Friday. Mainly, it was relief. I have been through so much since October 12th when I heard those words no woman wants to hear, and I am still standing. My relationship with my wife is still strong- stronger than before cancer. My relationships in general are all better than before. Life has become a whole lot more important to me. I feel more connected. I feel more in touch with the spiritual. I have a greater thirst for living. I am waiting impatiently for my body to heal enough to go out and have fun. My thought is... if the average life expectancy for IBC is 5 years... well then, what things can I do in that time?

One thing I can do is keep talking to other women about IBC and encourage them to talk to their friends about it. I can spread the word, educate and encourage the women I love to go get screened. I can hug any person who needs it. I can answer questions. I can speak about my experiences. I can share. I can give thanks. But most importantly... I can love and be loved.

Radiation photos... Not for the weak stomach... honestly

 Four more radiation treatments left!  I think it is time for some updated photos. So... Here is me, with Hair! I know you are as excited as I am, although I must say I am looking a little less than healthy. Don't worry, it will get better with time.

 Here is a nice side view of the hair. The remaining pictures are of the scar areas and mostly the effects of Radiation. Not for the squeamish...

Memorial planning... just in case ya know?

 Michele has to take this class on death and dying as part of her degree requirements, and one of the things they have to do in the class is plan their own memorial service. So, we started planning ours and when it came to the music part, she is fairly traditional, but me... not so much. So, my musical selections are as follows:

Don't Worry, Be Happy

I can See Clearly Now

Every Little Thing (is Gonna be alright)

Always Look on the Bright side of Life

Turn! Turn! Turn!

I'll Fly Away

Dont Fear the Reaper

The Sound of Silence

For me... These are quite fitting... Especially the Monty Python song.

I am the Warrior

Wow!  Time sure flies when you are having fun... or not. It seems like only yesterday I started Radiation and now I have only 10 more treatments to go. My skin is bright red, like I am sunburned in a very specific pattern, and it itches. But not like a normal itch... just like you are wearing a scratchy sweater kind of itch. I can't believe this is almost over with. I just keep waiting for something big to happen. Not that I want anything else to happen, of course, but the way things have been going I just keep expecting it. From the reading of various online forums, I see that the feeling is universal, this constant looking over the shoulder, feeling hunted, on alert type feeling. I realized that I am actually taking all of my happy pills in the month and that kinda scares me because the last thing I want is to become dependent on a drug to make everything alright. I wonder when this too shall pass...

My hair is growing back...fast! I am excited to see it again, even if it is a whole new color.I have gotten so used to being bald, that the hair is now startling.  I find myself petting it often, like if I stop touching it, it will disappear again. See... there it is again... that waiting for something to happen.

Home life is returning to normal. I went to the laundromat- by myself- and I have been contemplating giving mowing the yard another shot.  Even the animals have given up being well behaved for me, and are back to being the furry terrorists they usually are. I can work the whole week and not become a puddle of goo by the end of my last shift. And yet... even there I wonder how long will it last? When will the exhaustion come back?

So... in my usual conversations with my Best Friend... I spend most of my time right now saying thank you. Thank you for this day and this moment. I know it may be fleeting, this moment of joy I have at doing simple things, but thank you for it just the same. And then I ask if tomorrow could be just like today, please? I am not asking for great big things. I accept that I won't be 100% healed, that I won't ever be rich, that at times I will be unhappy, and sometimes bad stuff just happens... but if I could just keep having the same boring same old same old for a while... that would be awesome. I could use a little time to rest and get used to my new circumstances before the next big battle begins.

I think it must be slightly different being stage IV and not having anything visible going on inside than it would be if I were any other stage. I mean... many women can just go Whew! well... dodged THAT bullet! and go on with their lives, knowing that at 5 years they get an all clear. But I know that it's in there, somewhere, lurking... waiting for me to let my guard down... looking for somewhere to nest. I don't know if I can ever call myself a cancer survivor... so I will just have to settle for cancer Warrior.

Back to work...

Not many people can say that they are so excited to get to work that they have trouble sleeping, but I did Saturday night. I started back to work on Sunday, and I didn't have a wimpy shift either... no... I was there from 8am till 7:15pm. Then I was back Monday from 1-10pm. Michele said I looked better than I have in a while. And I felt better too. I hate sitting at home, doing nothing for days on end. I don't really enjoy tv. There are only so many books you can read before your brain hurts, and window shopping is really boring. I missed my staff. I missed my customers. I missed my boss. I even missed the repetitive stuff and I never thought I would miss that. It was nice to come home and be able to said I did more with my day than just sweep the kitchen again. I loved my hugs, the head rubs and yeah... the people who noticed I am no longer 189lbs (I was 172.4 today, thank you very much!). I already have another trainee to start, and I am excited about sharing my excitement if that makes sense.

Tuesday's radiation/chemo kicked my butt. I slept the entire day and then slept most of the night too. But I woke up today feeling refreshed and sunburned. Ah yes... the radiation is starting to show. I talked with my oncologist about the new drug coming down the pipeline June 8th (the day before my birthday... Happy Birthday Me!) and she said she will look into it. She is pleased with my progress, and said we may wait on that and try a different combo if she feels we need it, but not until after radiation is done. She says better to save some weapons for later if we don't have to use them now. I am back on the happy train. Yes...I may just be fooling myself, but I think I can hold this at bay for quite some time, and my doctor does too. She did say they did another marker test on me after surgery, which they don't usually do, and my HER-2 number had dropped from 3+  to 2... We aren't really sure what that means, because, like I said, they usually don't run that test on the tumor after surgery, and she isn't sure why it was run again, but we have some theories. She thinks it may be that the Herceptin is working, and that as it continues to work, my cells are slowing their HER-2 expression. I just pray that it means the number of cells is being reduced enough that the expression has fallen some. Whatever it is, Herceptin is working, and I am not showing any signs of heart issues.

I started walking home from work again. I love it. It's almost like life is returning to normal, like maybe I can get a small vacation from CancerLand. It makes me feel like dancing again. I want so much now. I feel like I am being given a second chance at life... even if it's a brief one... and I really need to revise my bucket list. I have some traveling I want to do. I would really like to try hang-gliding just once. I want a hot air balloon ride. I want to get back on a horse and just let it run with me hanging on for dear life. I want to go tramp around Transylvania county again. I want to go eat everything I can from every restaurant in New Orleans. I want to sit on the beach in the winter when no one else is there. I want to go fishing with my dad and make him bait my hook cause I hate that part. I want to go to the drive-in movies with a group of friends, smuggle in beers and watch the double feature from the back of a pickup truck. I want.... I want... I want memories.