I love this!!! A must read for all the warriors. Thank you Iridacea for this! AWESOMENESS!I have been realizing that some things that are obvious to my household are just not part of the lexicon of others. Here is a little explanation- I will add more per your request or when I notice something questionable here on Pooka Ride.
For more go to: Pooka Glossary
Today I had support group. It was a really good conversation. Talked about after treatment is over…then what? Most of the group agreed that we have become better people having gone though this. A lot of the conversation surrounded the “new normal.” I know I have been thinking a lot about how to more on and what happens afterwards. How do you pick up and start over. How do you find what your new normal is. How to deal with all the changes. In the beginning it’s overwhelming and hard to accept that your life will never be quite the same again. I know I went through a period of denial. I was going to be different than everyone else and I was going to just pick up where I left off and that was that. Even through Chemo I figured okay so I lost my hair, it will grow back and then everything will be back to the way it was. Then I had surgery and it started to hit me. Still not totally convinced. But somewhere along the line of sitting around for 9 weeks and going into the Surgeons office every week it finally hit me. I started thinking about the “No Evidence of Disease” and having to go to the drs every few months at first and then every year. With that the cloud that looms over your head and wonder if you are going to have to go back into treatment. I haven’t finished treatment yet, so things in my mind may change still. But I’m starting to think about the future. I suppose that is good considering in the beginning I didn’t think I had one at all.
So in looking at the future I went down to the navigators office and got these beauties…
Knitted 
Knockers. Now I have posted the website for them on Facebook in the past. I wasn’t real sure about them I mean…come on…anything knitted is like grandma’s toilet paper roll covers. But they work! It was very strange having any type of breast there. These are a C cup and they feel huge. So I can’t imagine what my DD/E’s were! Lord! So you just put these in a bra and shape them in. You can’t tell the difference by looking at them at all. I didn’t think I would be that excited about them. But I had my support camisole on so just put them in real quick to get an idea. I mean I automatically stood up straighter. (As I sat in the Navigators office fondling my new boobs) http://www.knittedknockers.org I have to say it’s the first time I’ve felt “normal” in months. I may get a few pairs in different sizes depending on my mood.
I wish I could knit better or crochet better. Maybe I’ll start practicing and start making them. I’ll at least give it a try. (the pattern is on the knitted knockers website)
I just got back from my weekly poking at the drs. I’m down to 5ccs now…I mean really? We are going to truly ride this out til the very end aren’t we. Whatever. So I go back in 2 weeks. I’m starting to just accept that every week (now two) I’m going to get a needle stuck in my side to see how much fluid we extract. Might I say from some of the support boards I’ve been on other people have like major fluid…not this measly amount to deal with.
Anyhoo…I was reading through some blog posts of fun exciting people like myself who have taken this little journey or are currently taking it. I got to thinking about what my purpose is for even writing a blog. I started this as a way to keep my friends and family updated on my progress. Of course after the initial “I HAVE CANCER” everyone is interested everyone is concerned. Then as time goes on fewer and fewer people are engaged in your progress or what you are going through. I know someone who was diagnosed with breast cancer that told me once she was diagnosed she stopped reading my blog. Now, I was trying to understand that. And in part I do. But I am such the opposite. When I was diagnosed I joined a support group though the cancer center and then the on line boards which led me to a lot of different people blogging about their experience. The people I met in Chemo were more than inspiring and I learned so much about not only my cancer but other types of cancer. I joined a work out group for cancer patients where again listening to people’s stories inspired me and taught me event more. I listened to the struggles of other warriors out there and learned to appreciate my situation. I found comfort that other people were making it through the struggle. They were having bad days too. They weren’t always positive. They weren’t always negative. It made me feel that I wasn’t alone in this journey and that some of the things I was going through and feeling were okay. So now that my friends and family are pretty much over this journey…Many of them think that as soon as you get through a certain point it’s all okay. What I’m finding is that each step has it’s own struggles and it’s far from over. It’s a long process that I have stated before that not everyone has the stamina to hang in there with you.
So here I am in another limbo (lots of BAM! treatment….sit around and wait) I’m in Physical Therapy, still getting one stupid seroma drained just waiting until the day I can raise my arm over my head so I can start radiation. So again….if my readership is down why the heck am I still doing this? I think at this point it is first of all for me. It’s been helpful to get my thoughts down and go back and re-read where I was at what time. I also THINK my hope is to help someone who has gone through this. I hope that someone who has been diagnosed or is in some limbo stage where you are frustrated and losing hope that you will get to move on can see that there is a struggle to stay sane through the rough times. That everything must end at some point. And you will get to move on; not always when or how you want, but you will get to move on.
I know I have a long journey left, and a lot of story to share ahead. I’m starting to ponder the life after treatments and what the new normal will be like. Will I always live in fear? Will I finally accept living each day in the present? Will I gain my self confidence back? Will I lose a part of myself? What will I gain? What lessons will I truly take away from this experience? And I think, for me, a big part is knowing that my story is not the only story out there. There are others just like me who are asking these same questions. I want to find some of these people and learn how they dealt with each stage, each setback, what kept them going. I want to share how I dealt with each of these things as well to hopefully help someone along just like me.
So to those friends and family who still read this silly thing every now and then…thank you. For those who are going into war or in the war….I hope my posts can help in any way…and never be afraid to ask me questions if you have them. I have found that you may not win every battle, but as long as you win the war it’s all good.
Side story here: So when you have breast cancer by the time you go through Chemo and have surgery you are so over any bit of being discreet. The dr has interns that he brings in…”do you mind” and I’m like “nope…there are still a few people left in the hospital who haven’t gotten to touch my chest yet…so why not” And like I just take my shirt of before people leave the room….like seriously…nothing to see here…and like I said…so many people have looked and touched my chest the last year…who cares! LOL!
We went to Spokane this past weekend. Boy did I walk. Friday hit over 11K steps. I haven’t done that since January. So needless to say I was hurting a bit the next few days. We had a really good time visiting with relatives and seeing the sights. Another state checked off my list.
Well when we got home there was a notice in the mail that I guess I’m scheduled for a CT scan and a DEXA scan on the 16th. Just when I stopped worrying from the whole NED (No evidence of disease) statement from my Dr I see the CT scan and start getting all worried. So I’ve been a mess. The DEXA scan is a bone scan to make sure that the chemo didn’t mess up my bones that much. I’m not real worried about that one. But I’m confused on the CT scan. I mean the dr said that I was clear…I was good to go. Now we are doing this. WHY!!!???? I’m sure it’s a formality but it made me realize that I’m going to be paranoid with every drs appointment and every little thing that doesn’t feel good. I mean the last few days I’ve not been feeling all that great. Of course my mind goes off the deep end. But I’m sure the humidity and weather have absolutely nothing to do with that (sarcasm).
One of my major issues in life is that I worry about nothing too much. While I was in Chemo I have to say, I was so laid back and didn’t worry about stuff. Of course I was so drugged up I don’t really remember much. I need to stop freaking out about every little thing. I can’t sit here and say everything will be fine with a clear conscience, but I can say I need to not worry about things I can’t control and live life every day. I tend to get caught up in the cancer ruling my life. Even post cancer it’s like a cloud that hangs over your head and you are just waiting. Well, I need to stop doing that. It’s not doing me or anyone around me any good.
The other thing I really really really need to pay attention to is what I eat. Besides the fact that my taste buds totally changed so did the way certain foods react with my body. Look…I’ve been eating french fries for a good 45 years now….and the other day I snubbed my nose up at them and chose a salad as a side. This is a huge change that I don’t know how the heck to take it! I mean…what the hell! FRENCH FRIES!!! And onion straws. I love onion straws. No, no I don’t like them any more. It’s like all of a sudden…I can’t stomach anything that was fried. (and they just put in a Panda Express in town…..I won’t even attempt it)
I suppose this is all a good thing. I’ve cut down on bread since my body seems to feel inflamed after I eat it. And wine. OH WINE. I don’t feel so hot after wine. That has to be one of the hardest things to accept in this new way of life. <sigh> Okay, so lets take count….no bread, no alcohol, no sugar, no fried anything, no potatoes. OH did I mention the smell of meat makes me ill. Especially red meat. I can take chicken if it’s cooked a certain way…but any more I’m okay just skipping the meat.
Well I have fought this eating thing for a few weeks now just to make sure it wasn’t a fluke. And it truly seems that if it’s not a vegetable or a fruit I get sick after eating it. Fine whatever. But at least I’m alive to bitch about this stuff.
It’s so nice to move onto something…anything at this point! After 9 weeks of sitting doing nothing I am so motivated for this! They gave me some exercises to do and did some massage. Felt pretty darned good. But she was explaining how because of the pectoral muscles that were cut and the effect that has on my posture…not to mention the hunching over to “hide” my absent chest. Then all that affects the back muscles. There is more to do than just range of motion to get my arm over my head. I have those exercises but I also have exercises to help my posture. So I’ll go twice a week until I can get my arm over my head. I’m hoping it won’t take too long.
Then I got home. I was wondering why she kept asking me if she was pressing so hard. I was like NO…well I have no feeling in my chest still so… But yeah, I was cooking dinner and all of a sudden my back started hurting A LOT!
We are only doing exercises on my left side since we are still dealing with the seroma on my right.
But I will do my exercises religiously at least once a day. I want to level up!!!!
