Winter rads 2014-2015

And, sorry for my bad manners - hello to those who have joined us. I'm sorry you had to but this is a supportive group and full of very kind women.

Hi, KGotThis and Carynbrit,

Welcome to this group! I've only been part of it for 3 days and I've already received much-needed help and support. I hope to be able to return the favor to others someday.

welcome tortuous, Fahrenheit, and Amanda's, this is a great group I'm just sad that it keeps growing. Not everyone has to deal with the sharpest and road maps. I got 3 ratios and they are able to line me up with those. My advice is to use whatever skin cream you choose the first day of rads. I bring it with me and apply it before I put my shirt back on. I used the cream liberally twice a day till I started to get burned then I stepped it up to 3 times and put aquafor on the burn after using my cream. Don't wait to use it put it on the first day it helps! You will find you get fatigued in a different way then chemo. It's much more manageable but it will start quickly if it's to close to your last chemo. I started 2.5 weeks after chemo and my last chemo hit me the hardest. You can also use 100% aloe Vera gel and keep it in the freezer. Callendula cream works best for me and you can get it at whole foods or online. My little nutrition store in kelso washington had it. I think the hardest part for me is the long drive five days a week. It hurts my ability to work hand finances are tight. It does go fast after the first week though. It's odd I have spent the last 8 yrs being a caregiver for people with cancer among other things. I thought I knew what cancer was all about. I really didn't have a clue. This is one life lesson I could have done without. You will get through this though. We all have so much to fight for! Justean I wish I could give you a hug I can't imagine what it's been like for you all these years but you too are a survivor and I hope you find the strength to fight! , We are all here for you no matter what you decide.Stay strong sisters and let's all kick cancers butt!

I can't take the Xanax when it's within 6 hours of taking my sleep disorder meds (which is at 7:30 PM) according to the doc and the pharmacist. And the sleep disorder meds don't do anything for this anxiety. So I'm not sure why I even really have the script when it limits me to taking it maybe twice a day.

Social workers are wonderful people, in general, and have helped millions get through things. For me, tho, they have never once helped me deal with anything. I told her very nice on Friday that I would never call on her and I won't.

I don't feel like a survivor. I feel like I'm still, nine years later, in the thick of the battle. It never ends. It's just playing a sick little game, playing with me and making me more and more ill until it kills me. I have no doubt that it will. It's just a matter of time. I would never do anything to hurt myself but dear goddess I am tired, oh so tired of this and if I just didn't wake up tomorrow that would be fine with me.

The techs on Friday showed me on a scale they had how much of my lung would get fried. They thought it was a tiny amount and no big deal, but it was almost an inch! Into the lung of someone with chronic and bad lung issues? That seems like insanity to me.

But then again, maybe I'm the one that's insane. Maybe this fucking disease has finally brought me to that point.

I also don't understand why my RO didn't show me that planning thing. I never even heard of it until just now. WTH?

And the PET scan is a whole 'nother subject. It shows lesions all throughout my spine and pelvis that were not there in 2010, but not of them "light up" so they are not sure they are mets. To me it seems that a biopsy should be next (why do rads if I'm really a Stage IV now?) but instead the MO wants me to do the rads and just wait a couple of weeks while she and the RO and others "talk" about me. Add this to the list of things that make no sense to me.

I don't do well when I don't know what's going on, and there are way too many unanswered questions. I think I'll call the center right now and leave them a message that I am cancelling for tomorrow and see if they have an RO that can call me back. I'm one of those people, brain damaged from chemo or not, who has to understand. And I don't.

Hello Carynbrit and AnasNana - I added you both to the Winter Team Roster.  I'm certain there are other teams you would rather join, but you will get well supported by a lot of women who understand what you are dealing with.  We all wear similar shoes.

Perfect - Adorable!  and the trees are nice too! 

Well, I really messed this one up. I was supposed to be there at 8 and since I didn't go to sleep until sometime after 4:15 I overslept and did not get up until 7:42. Oops.

So I called the hospital, they have an opening at 11:40 and want me to come in at 11 to talk to an RO so she/he can show me the plan that there is for me. Hopefully this will make things easier for me.

I'm still going to take a Xanax in about 15 minutes. I don't want a repeat of the panic attack I had Friday.

I'm going to the dark side. I will be fine. I will be fine. I will be fine.

coyotenv my xmas tree should arrive today or tmrw- I began pulling my mother's Santas out of the attic- and well I'm still doing so. She had hundreds! I'm living in her townhome in Houston- she passed two years ago- odd to be fighting health issues in the same home where she did too- she was the most courageous, brave person I've ever known- and I miss her every day- I never thought I'd live in her tiny home in a big city- now I can't imagine being anywhere else including back in my home in jackson hole- I think the dogs may boycott if we stay another summer though. Coyote that IS beautiful countryside where you are- I will get holiday decor pics up when I dig out from under these santas

Some of my blisters ruptured last night- this cream my friend sent (I posted info previously) is Like a miracle lotion!!!! I will post pics of my burns and new sharpie art today for you too!! 😄. I see my RO today for my weekly - #22 today. Sending love and light to all you ladies

I think the blue bullseye that's been on my nipple since oct 30 is designed to help Santa find me faster- I keep asking for a mini donkey and baby goat so fingers crossed! My back is really crispy and red, like holiday deco

This would be two of six bins of Santas.....this is also about the time I made a spiced wine spritzer

Okay, well, here's the update. It was quite the eventful day and not a very good one.

I got myself together, took a half a Xanax (cuz I have to drive to work and actually function), and off to the hospital I went. I talked to a different RO than mine and I have to say that if she were MY RO I would be looking for another one. She was very dismissive of my concerns and was very much a member of the "let us worry about it" club, an attitude which I detest. However, I continued with my questions until after asking the same question in different word combinations I was able to get some answers out of her. And she did, after I asked, show me the computer models of what would be radiated. I have to admit to being startled as to how high up on the neck area they go and now I have a new concern because I also have swallowing issues from a bad surgery many years ago and do not need more. I am not as concerned now with the lung and heart issue tho, although it will still remain in my mind.

That little chippie nurse down there, when I asked her questions, was of the fluffy cloud pink ribbon variety and seemed insulted that I asked about what to look for as far as side effects. How dare I ask? There wouldn't BE any!. So I told her to never mind, and told her, as kindly as I could, that she was obviously not someone I would go to with questions and she didn't need to worry that I would ever darken her door with one again. And then I walked out. She's lucky I didn't go off on her.

...sigh...

So off I went to change into that lovely gown and what do i see all over the walls outside the changing area? Bras. The entire wall was covered with them. All decorated up like mad. Perky, pretty bras. For someone like me who has no breasts and cannot even wear a prosthetic because of pain, this was a slap in the face. I have to look at those every weekday for the next two months? No. Nope. Ain't gonna happen. I took a page out of the fluffy pink cloud book in the waiting room and wrote on it that I, without breasts, who can't wear bras of any sort consider that wall a slap in the face.I'm sure it will be gone tomorrow, but that's okay - until they get me a different changing area, I'm going to put one up there every single day to make them at least think for a moment about what they are saying.

So then it was into the room. I had to stand at the door for a minute or two and fortunately one of the techs in there was one who witnessed my meltdown on Friday and she hushed the other one who was about to say something. I am thankful for that, for the time to make that real decision to do it or not. I may make her cookies. So I got on the table and shut my eyes and they were very good about keeping me covered unless it was necessary to look and I got through it. I was out of there real fast when it was over but fortunately no one walked in front of me so I avoided mowing anyone down...

Then I leave the hospital and see I have a voice mail. It was my RO and WOW, she is still on vacation but gave me her cell phone number. So i call her and she tells me to call her whenever I have a question and that she was sorry that they didn't take better care of me on Friday. We had a good talk, including about that wall of bras. She's going to call the manager of the rads area and ask if there is a way that I can be handed a gown and allowed to change somewhere where I don't have to look at a wall of reminders of what I don't have any more. I rarely think of it but it's hard not to when faced with something like that. So then she says she wants to talk about the PET Scan results. Now, she is taking what I call the duck attitude. If it looks like a duck and quacks like a duck and walks like a duck and reasonably looks like a duck, well, it's most likely a duck. She feels that I am now Stage IV and the bc has gone into the bones. She also said that it was her opinion that all of the lesions are too small to biopsy with any degree of accuracy. She said that if we did it and a met confirmed her suspicion that we'd be lucky and that more likely I'd go through the procedure (I hear it hurts a lot) and get a negative result which you couldn't count on because of the size of the lesions. We also talked about the rads and how she set things up and she was empathetic and seemed to understand and validate that my feelings are real, so I like her even more than I did before.

When done with that conversation I get off the phone with her, go into work, go to my boss's office and have a breakdown. Poor man, he does not know how to deal with hysterical women. I've certainly never been hysterical in his presence before. Hope to never do so again - that was not my plan. He picked up his college slide rule (he's an engineer) while we were talking, which told me how uncomfortable he was with the conversation lol, but he had to be told! However, he was good and will be supportive of whatever I decide. Then I called my HR head and she was like "Oh, J, you've fought so hard for so long, I hope you can do it and I'll support you any way that we can here at the job", which was nice.

Then I notice I have another vm on the phone (never saw it ring) and it's my MO. She also wants to talk about the PET Scan but she has a different take on it. She is much younger than the RO (which may not be a factor at all so forget I said that) and she says that even though it certainly could be "a duck", she says that she has had a handful of patients present with this and that not all of them turn out to be ducks. That would be fine with me if this was not a duck, but I'm going to think the worst and then be pleasantly surprised if it turns out to be otherwise. So she wants to wait and repeat the scan in 3 months and in the meantime wants me to finish the rads and then switch AI's from Arimidex to probably Aromasin although she's not sure yet if that will be her next choice.

So there you go. A rundown of the day and the knowledge that they better not let my Xanax script run out. I'm taking another half one tomorrow morning - I truly think it's the only thing that allowed me to walk in that room today. Radiation can be so so so very bad - but what choice, really, do we have? Damned if you do and damned if you don't.

Thanks for being the supportive bunch you are. Never needed this level of it before but it sure was nice to know that when I needed it y'all were there. I'm not making you all cookies though... ;-)

JJ

Well, dang, Jean, I really wanted a cookie!

Seriously, I am so impressed by the way you handled the day. You've had/got way more than your share of pain and it is unconscionable that they are not more sympathetic to your fragility and vulnerability because of it. That is an EPIC FAIL on their part.

I wish there was something tangible I could do to help ease your pain.

JustJean, You had a difficult day, but it sounds like you handled it very well! I'm glad you took the time and effort to share your experience with us. I was thinking about you and praying for you today.

Hi Jean, I'm sorry you had such a tough time. I wish there was something I could say or do to relieve some of your aggravation. If you ever get to southwestern NY, I'll bake YOU cookies.

Hi JustJean,

Glad the medicine helped you today -

Justjean, I'm glad you got to talk to your RO. It sounds like almost everything went better after that conversation. I suppose some people think that wall of bras is inspiring, it sounds a bit bizarre to me. I saw my RO today, he recommended cortisone cream for the rash I started to get last Friday, I don't want to go around scratching my chest! He said it might get worse over the next week or two before it gets better.

Only one more treatment, tomorrow morning. I can't think what I'll do with myself when it's over.

Katie, only one more? You GO, woman! 2 down, 28 to go for me....

J

As another who has had a BMX and will never have breasts again, I can see why you don't want to ever see that wall again.  That is just AWFUL!!!!!!  I am afraid if I had to look at that wall, "chippie" would not like what I had to say about it either.  I love to see how much more annoyed I can make someone when I know they are already annoyed with me.  It is like a game and I am sure you can play that game better than she can.  You go girl, this is going to make your day, every day!!!!!