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.

Just blowing off steam (or Why else do I blog?)

You know how sometimes in life you are sailing along just fine, the future looks bright and for once things seem to be going your way... then it happens. Something pops up that just wrecks everything. I have had one of those weeks. The sad thing is... I can't even really talk about it. No... it's not anything related to my diagnosis... or at least it isn't anything that has changed for me health wise with my diagnosis. This is what I guess you can call collateral damage, or how my diagnosis has changed my daily dynamics. And here I am... stuck in the middle of something that is basically a no-win situation. I am not going to get into what is going on,  but I am going to do a little venting.

You know, through this whole ordeal, I have tried to stay positive, stay focused on the path, and work on getting well. I have done what I could to minimize my own stress by giving up a great deal of control in my life. I have kept a lot of my pain and fears to myself because I knew that those around me can't bear to see me hurt. The few times I have opened up and discussed any of my frustrations, stress or fears have turned around to bite me in the butt. And so I started keeping it all inside, stopped confiding in anyone, started shutting myself off. Sure, on the surface I seemed the same, but beneath it, I became distrustful and angry. Then it became resent. Sometimes I just want to shout and scream, but I know that anything I do or say will just be turned around and become something it isn't. No matter what I choice I make, no matter how I try to express myself, I know I will be painted as the bad one, that whatever I say is an attack. So... what do I do? I'll tell you what I am going to do. From this day forward, I am not coddling anyone. I realize that my diagnosis has caused stress for some people, but you know what... get the F*ck over it. I am the one who has a terminal disease. I am the one who is facing my own death.  Right now, I have the right to stop worrying about how my diagnosis impacts anyone else... I need to focus on how it impacts me. I am no longer feeding anyone else's victim complex. That's not to say I plan on changing how I approach this... it's just saying that I will no longer approach this quite so quietly.

Does this mean I plan on playing the poor pitiful me card? No... I don't, because I refuse to be a victim. I am a fighter, and anyone or anything that gets in the way of my positive recovery/remission will be removed from my life.

Radiation and stuff

So... I have been going to get radiation for a little over a week now. My skin is turning pink and feels all tingly, like the beginnings of sunburn, but not extremely uncomfortable. I imagine that after six weeks or more of this I will most likely be hating life and be trying to claw my skin off, but hey... anything is better than cancer, right? As usual, I am still the youngest one there. I love the two ladies who are also scheduled at that time of the morning. They are so cute. We talk about spouses, pets, gardening and yes... the big C. Both of them have been through all of this before and are dealing with recurrence. I make them both laugh as I cover up and then fling my blankets off when I have a hot flash, and they make me smile when they reassure me that this too will pass. It's funny how up until now I haven't really talked to any other patients in treatment. In the chemo room, I fall asleep so quickly there was never a chance to talk, and in the waiting rooms, everyone is kind of wrapped in their own thoughts. I did see a woman about my age at the oncologists office this week. I don't know if she was there for herself or for a family member, but she kept glancing over at me. I smiled at her and took off my hat to show off my pretty new hair and she looked away. It made me wonder about what she saw when she looked at me. Did the hair loss scare her? Or was the new growth encouraging? Was she imagining herself at that point, or just embarrassed that I noticed her looking?

I have been driving myself to radiation! I have been so excited about it... I feel like a kid who just got her license and is being allowed to drive alone for the first time. It has been a while since I have been allowed to drive that far by myself. Also, I walked up to the store the other day. It was awesome! I can't wait to be able to go back to walking to and from work. It finally feels like I am finding my way back to normal life. Every time I get to do something, even doing housework, I get excited. No one should get this excited over mopping. It's just not natural. But for me, the fact that I am physically able to do it, and that I am no longer having to worry as much about having a compromised immune system means that the end of this phase of the madness is in sight. We have even started planning our wedding again.

Oh yeah... the wedding. Well... when they made it legal in NY, we started planning to have a legal ceremony in NY for our 20th anniversary, which is this August. Then came the big C, and we stopped even talking about it. Now that we are getting so breathing space, the planning is back on. I'll have to do a whole other post on that topic, because... well...wedding planning is a whole lot of stuff.

This brings me around to my big thought for the week. No matter what you are doing, whether it is planning a big event or doing the litter boxes, be thankful and excited. Until this happened, I complained about what all I had to do. Now I am grateful that I am here and able to do even the most mundane things. yes, mowing the yard can be a pain... but not being able to do it is much worse.

A week of Blessings

The last couple of weeks have been some of the best since I was diagnosed. With all of the great things that have happened lately, it has been hard to say what exactly was the best of the best, so we will just start from the beginning.

I had that really bad visit with the radiologist. Mind you, he was not my doctor, but was a doctor at the clinic who had been handed my file that morning because my regualr doctor had an emergency to deal with. He scared the crap out of me, I won't lie... but we had another PET scan. The results came back. Bear with me while I quote:
" PET CT scan was performed from the skull bas to the mid thighs. No abnormal metabolic activity in the supraclavicular neck. Left chest wall Port A Cath is seen in place. Post surgical changes status post right mastectomy. Postsurgical changes post right axillary node dissection. I do not identify any abnormal metabolic activity at these sites. No abnormal metabolic activity is identified within the abdomen or pelvis. No abnormal aortic aneurysm, No bowel obstruction or interperitoneal free air. Review of the CT lung windows does not reveal any suspicious pulmonary masslesions. No Pleural effusions. small amount of bilateral lower lobe linear atelectasis. IMPRESSION: Post surgical changes status post right mastectomy and right axillary node dissection. No abnormal metabolic activity to suggest residual or metastatic breast carcinoma."

I know... what the heck does that mean?... well... it means that the radiologist was wrong. Yes... I still have cancer, but I am not dying any time soon. My doctors are all very happy with the scans. So we started Radiation two days ago.

Doofy me, I burned myself with a heating pad. It's really gross. But everyone needs to be proud of me. I went to the doctor without being forced to do it and I am treating it just like I am supposed to. Second degree burns, right in the area where I am being radiated. All I can say is thank goodness I can't feel anything in the area where I did it because that is right where the mastectomy scars are. Yep... mastectomy scars, second degree burns and radiation all in the same spot... Could I possibly make things any harder on myself?

Me and My sister

My sister came to visit. It was so awesome having her here with me. My poor sister is battling her own health issues, so we both sat around and chattered, ate junk and did arts and crafts with mom. Mom taught her how to cross stitch. We went to the mummy exhibit at discovery place and played with all the interactive exhibits. It made me miss all the time we lost being sisters growing up, especially when we were up in bed still talking long after mom sent us to bed. I kept expecting her to come down the hall to ground us. I miss her so much when she is away. When she is here, I just can't seem to contain how happy I am just to sit with her, even if we are just reading in the sun. Thank you so much, God, for letting me find her again. I never realized how much love I would feel for my sister until I found her again, and now every time I think of her, I just can't believe how lucky I am that she is my sister.

Me and my sister at Discovery Place

Michele and I went to the movies yesterday. Do you know... for two whole hours, I didn't even once think about cancer. For two hours, I sat in the theatre, eating popcorn and candy, snuggled up to my sweetie and was just a girl out on a date with the person she loves most in the world. It wasn't for a whole hour afterwards that I started to cry ( not sad tears... happy ones) because for the past week, I have had so many times that I forgot completely about the Big C. One more reason to give thanks.


Thank you so much God, for this wonderful week. Thank you for all my blessings. Thank you for every day (even the bad ones... but You know... I prefer the happy ones... just sayin'). I am truly blessed

Very Quick update...

Well, Avid Readers.... I am sorry I have been a little behind this week, but my sister came to visit, and as much as I enjoy pouring out my thoughts here, it's more fun pouring out my thoughts to my sister. Of course there was the usual joy of doctor visits, but all in all, it was an awesome week.

The radiation doctor sent me for a PET scan, which must have come back fairly okay, because he seemed optimistic when I saw him. We didn't talk much because they were actually just getting me lined up for my new tattoos. No... not like fun tattoos... but marks for where I will be radiated for the next 6 and 1/2 weeks. Yep... he added an extra 4 days for some reason. As soon as I get my groovy new tattoos, I'll post some pictures. I hope they aren't as big as the sharpie marks they put all over me when they mapped me, but if they are, I will just have a contest to design me a tattoo to incorporate the marks into something that looks less like a dart board.

My Bulb came out finally. God bless my sister who went with me for that visit. I don't know if I squeezed her hand off or not, but after two xanax and an oxycodone, I really didn't know a whole lot of anything.

I had my first BEER since last year!!! Oh... Beer... how I missed you!

I did real yard work today... I weeded a flower bed and raked up under my trees. Of course now I have these piles of waste all over the yard, but for my first day being semi normal, I think I did pretty darn good.

That was my brief update. I will get in depth tomorrow. For now, I am going to go take a BATH. Yep... a whole body immersion bath. I have a gothic romance novel, some ice cream and my bath pillow. I fully intend to be there for the next couple of hours, so don't wait up.