Why was I stronger DURING treatment than I am now?
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Bluebird, that's pretty much the way I looked too it oozed, hurt, just yucky. I got a weeks vacation, then the 5 boosts(wasn't happy about that) then the last of the regular tx. It took everything I had to drag myself in there for the last few treatments. They dangled a carrot in front of me. I had talked about Spookie so much the techs said I could bring her the last day. She got all dressed up with her best bow and dress off we went.
Started healing in a few days with no further problems.
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Wow, Spookiesmom, you healed fast. It took me three weeks. We had to postpone my second three month course of chemo.
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I had chemo first, then surgery, then rads. Last blast was last March. Used lots of silvadine. Good stuff!
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Jeannie, Spookiesmom, & Bluebird, ok... You ladies are tough, that was your "good side" Bluebird? Yikes ! ! !
Most people do not have a clue what we go through, and I know that those of you that have done reconstruction, wooo. I do not know...I am impressed.
I am dreading the next week or so. My DH is so excited. I am done! Telling everyone. I am not feeling it, but this too shall pass.
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Bluebird gave a good description of a moist reaction. I breezed through rads but that started in about a week after the boost at the end. I think I made it worse, though. We were moving, and my onc told me "no heavy lifting", so I was in charge of packing and unpacking the smaller items. But small, repetitious movements were also a bad idea. With my husband and sister breaking their backs moving our entire house, it was hard to sit there and not help. So I did, but paid for it later. The skin was falling off in chunks. I couldn't wear even wear a top until I found some specialty bandages that cost $11 each.
Jeannie, my docs were actually wonderful all through treatment. My med onc sat down with me and drew out on a piece of paper exactly how much each risk factor was increasing my risk of mets, and how much each treatment was reducing it. And they were OK with side effects that happened during the course of treatment. But as soon as that last appointment was through, they didn't really want to hear from me until my next follow-up.
I've had a really good week. I've been working full days again, and exercising, and meditating, and either cooking dinner or going out. I ran 20 minutes solid on the treadmill on Monday! We went out to a show the other night and I didn't get back until midnight. I was nervous because that is the kind of thing that upsets my apple cart for days...I just have no resilience. But even though I slept in a bit yesterday, I still had an active day. I did sneak a little extra sleep time in this morning, but I haven't felt like a little blip in my routine means a week of being a zombie. Only took a couple of years to get to this point!
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This is about opening and closing the mind and heart of awareness of BC.
I had 3 tumors triple negative and another tumor turned hormone positive after treatment (chemo followed by a double mastectomy).
When this was discovered post treatment my first onc wasn't sure if I should take an anti-hormonal, on the fence and then decided no because of side effects.
I changed oncs because the first was good scientifically but was inhuman. When I saw my new onc she was on the fence too but leaning toward yes.
I was, at the time, so sick of treatment that I declined. She said to come back before my next scheduled appointment if I changed my mind. I had put BC in a room and finally got the door locked and was happy and really getting on with my life. I just didn't want to deal with another decision! I didn't want to deal with potential side effects of these drugs.
This week I listened to a podcast by a well-respected specialist in TNBC and part of it talked about women who have a tumor with a small amount of hormone positive cells. She strongly recommended that these women get on an anti-hormonal and I decided to go back to new onc and get on one.
I did not know that making this decision would unlock the door of BC awareness and I've been flooded by former memories of diagnosis and treatment. Especially I have gone backwards and am struggling with the same feelings of anxiety that I had before. I was not expecting this reaction! I hope that my appt with the onc on Wednesday will help with the anxiety. I feel as if I've become a warrior again like I was in treatment compared to a BC survivor who had her head and heart reassured.
Has anyone else had this experience? Thanks for any response or advice you might have. Does any of this make sense?
Hugs,
Peggy
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Peggy yes - its a post traumatic type response, you have brought cancer in to more active awareness again, denial is often a much nicer place!!! Normal but challenging experience sad to say.....
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Spookiesmom, I was going to bring my new puppy in on the last day also, but could barely move and knew I didn't have the strength to control a puppy. Thought about going back later but just never did. Glad spookie was there with you to celebrate being done.
Cfdr, you give me hope that I will get back to a normal routine!
Peggy, I am convinced I have PTSD and certain smells, places, and memories kick it into high gear. That initial fear and the fight or flight hormones are just beneath the surface. I'm better about the anxiety now but I think only time helps.
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Peggy, how lucky for you to listen to that podcast. I hope the anti-hormonal does its job. But I can understand how it would open that door again. It's difficult enough to get used to the "new normal" without it changing to a new new normal!
In the last couple of weeks, I went out to dinner with a BC support group that I joined last year, and to another dinner with a group that worked together on a BC research fundraiser. Even though I enjoyed both dinners I also felt like it was too much at once...that I need to resume living my life, already in progress, not talk with other survivors about breast cancer all the time! OTOH it's good to be around people who can discuss it as equals, and not say "Oh, I get fatigued too, we're all getting older" or give me the pity face and ask how I'm feeling, and telling me how strong I am blah blah blah.
Bluebird, normalcy will return! You may not recognize it when it does. I totally get the "new normal" idea now.
I signed up for a clinical trial about asthma last year, totally not related to BC, but once a month I have to go to the same parking lot, walk the same paths to the same building where I had treatment. It's actually been helpful, because now I have other associations with the clinics besides just BC. The first time I came back, I reminded myself that I wasn't there so that the doctors could help me. I was there to help the doctors. And that was a great feeling.
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this is where I belong! I'm tired of being tired. Lots of treatment the past 2 1/2 years. It's only been a little over three months so you guys are reminding me it's only been a short time. I am hypothyroid and I think it's off, even though the one test shows in normal range. My next task is to find a Dr who will look at more thyroid test results to see if more can be done to help me. I'm getting back to PT as well. I suspect I am expending more energy than I think while my body is coping with the after effects. My whole rib cage is tight making me scrunch my shoulders and neck. This cold snowy weather is not helping either!
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cider8, you're right, 3 months is not long at all (even though it seems like forever!). When you go for your thyroid check, be sure they check B12 levels, too. When I had my thyroid checked (because of fatigue 5 months post-chemo), the thyroid was fine but B12 was low. I've been on monthly shots ever since.
Good luck with PT. I was getting random cramps in my rib cage, and couldn't even lie flat because of rib pain. PT helped a LOT.
Looking at your Dx history in your signature it looks like 2013 was a hell of a year. Was this one cancer that kept returning? Three separate cancers? Or do they even know? I was a basket case with one Dx of stage 1, I can only imagine what you've gone through.
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cfdr, they aren't sure if the IBC is a new primary or a recurrence, because it showed up on the breast that had no cancer when I had my BMX. So they treated it as a new primary. The Aug dx of IBC shows I was upstaged after surgery, so that was only one cancer. I just didn't have a good response to chemo. In total I have had 4 types of breast cancer! Sucks but I take one day at a time.
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Geez, cider8, you have really been through the ringer. omg. best to you
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Just heard from Sloan!!!! Totally contained in uterus! Nodes clean. No chemo. Just radiation!
Hooray!!! and thanks to all of you for your kindness. You are all spectacular!
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HAPPY DANCE TIME!!!!!!
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Timubuktu - You are spectacular! Three cheers for your fabulously clean nodes! And yay for your uterus for containing things. I'm so happy for your news. I hope you sleep like a baby tonight.
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Tim - Fantastic news!!
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Hooray !
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So, so happy for you Timbuktu. Great news that there was no spread and no need for chemo. YAY!!
Julieho
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So very, very happy for you, Timbuktu! Great news!
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oh timbuktu... such great news! i am proud of your uterus for keeping it all in there, too! AND NO CHEMO...EVEREVEREVER!!
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Timbuktu, that is the BEST news! Smiling from ear to ear for you!
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wonderful fantastic news.......if its all contained why radiation?
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Lily, cancer being cancer, you have to take precautions. It was high grade, 3. Fast growing. The nurse didn't explain any more than that. My guess, and it's only a guess, is that the cells may have been shedding into the vagina, how could they not have been since I was bleeding? I need to find out more.
To tell the truth, as wonderful as this report is, there is always that element of doubt and the unknown. I don't have to tell you girls how sneaky this disease is. I want to send all of the reports to Anderson to get another opinion.
Apparently Sloan's pathology, once again, disagreed with U of Chicago's. I need to have two opinions that match before I go ahead. But this is a huge deal for me. U of Chicago thought this was not your usual, run of the mill endometrial cancer which is fairly survivable. They thought it was the other, rare kind, that goes straight to the nodes and spreads early. That's what had me shaking in my boots! There isn't even much research about that other kind.
It really made me realize how much research has been done on breast cancer. There is no oncotype, no arimidex, etc, for that kind of cancer. From what I read on the net there isn't even a good idea of the cause or a good treatment protocol. So, if Sloan is right, I went from a rare untreatable aggressive cancer to your everyday, common, aggressive but treatable one. Still, there seems to be much more known about breast cancer and as much as we're sick to death (no pun intended) of all of the pink ribbons, etc. apparently they have done their job!
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Glad to hear the good report. I hope Anderson agrees with Sloan! And most of all, I hope you are on the road to recovery and feeling better.
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Timbuktu,
Boy howdie, this is a huge deal, thinking of you, hope you are healing, resting well and getting answers from your medical teams.
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Zippidy Do Timbuktu (yes! it rhymed!). I very happy for you. I wish we could give thumbs up to other's comments on this thread cuz I loved all the happiness coming toward you. Kathec: I love that you are "proud" of Tim's uterus. I was already smiling and this made me smile/chuckle. Keep us updated Tim. (((((((hug))))))))
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Purl, good one, you are a poet !
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Agree, & like!
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Thanks everyone! Where did you find thumbs up kathec? That's what I kept saying while I was waiting for the path report, I was waiting for either thumbs up (life) or thumbs down (death) .
Glad I could put a smile on everyone's face.
To life!
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