Why was I stronger DURING treatment than I am now?
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Wow... I kept saying I feel fatigued but never really thought it was fatigue because I had finished chemo. So I convinced myself that maybe I'm just really tired.
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Dlia, the fatigue is from all of it. The stress and emotions from dx, treatment, the year from hell in general. Then comes that day when you don't have an appointment anywhere. And you do the happy dance. You feel a sense of relief for surviving, but sort of let down too. And realize you are TIRED. I've heard it can take a year or longer to recover. My last rad blast was last March. My naps aren't as frequent now, if I'm tired, I sleep. I deserve them.
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Dlia - Way to go - 5 more, you can do this!
The fatigue from radiation didn't really hit me until the last (seventh) week, and boy did it hit me. Like a truck. My Doc said that because it hit so late in treatment and hit pretty hard that it could take 4 or 5 months to feel better. My last radiation was in November - I am watching the calendar! Then I started Tamoxifen. . . and I still have 5 more Herceptin. My chemo brain has improved lately. My daughter made it a point to let me know that she was super excited that she could have an intelligent conversation with me again and worry a little less about me having a random meltdown. That felt really good. She was even able to give me some good strong examples of reasonable conversations or decisions that I had made. Whew! A light at the end of the tunnel!
I went car shopping with my oldest sons girlfriend today and was able to negotiate a great deal for her on a new car and got her out from under a car that was killing her budget with maintenance.
I will remember these things the next time I have an off day and maybe just allow myself to be tired or emotional. I wish I knew how to let myself be just really pissed off for a couple of days. I guess it's just not in my nature to allow that kind of behavior, even if I think it would do me some good.
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Jeannie, I got pneumonia the week after my last chemo cycle. Even after I was feeling better, and my doctor said my lungs sounded better, the x-rays were not clear. They did an MRI and confirmed it was scarring from radiation. Haven't had cause for an x-ray since, so I don't know if it ever healed up.
Dlia, the fatigue can last long, long, long, after chemo has ended. According to this study:
Specific to breast cancer, fatigue is reported by a substantial majority
of patients during their initial treatment (surgery, radiation, and/or
chemotherapy). In addition, although estimates vary widely,
approximately 33% of individuals with breast cancer report persistent
fatigue up to ten years into survivorship.6,20,21While most common during the treatment
phase, fatigue also affects a substantial subpopulation of individuals
with breast cancer for months and even years into survivorship.3,20 Approximately 30% of breast cancer survivors experience moderate to severe fatigue after completion of initial treatment,3,20,46 and fatigue in these survivors has been shown to endure for up to ten years post-diagnosis.3The
functioning/quality of life impact of this enduring fatigue is
significant and has been associated with decrements in physical
activity.3,47,48
Thus, while increased physical activity has been shown to alleviate
symptoms of fatigue, greater fatigue is nonetheless associated with
lower levels of physical activity. This suggests a possible
self-perpetuating cycle of increasing fatigue leading to decreasing
physical activity leading to even greater fatigue, and so on.It's worth reading...it's a summary of other studies (thus the numbered links excerpt), and goes over what is known (or was as of 2008) about fatigue related to breast cancer before, during, and after treatment, as well as a look at what may or may not be causing it, and what may or may not work to help it.
Spookiesmom...5 months after chemo, I was diagnosed with pernicious anemia, which, whaddyaknow, causes fatigue and brain fog. If it ain't one thing, it's another!
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Thanks for the info ladies!!
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Sorry I have been away for a bit. Timbuktu so glad to hear you are getting surgery and getting on with it. Get it out is right.
Can't post on everyones updates but I read them all and can't tell you all how much I love hearing from everyone.
I found out last week that all the pain and weird stuff I have had going on is actually two auto immune diseases, possibly more than 2.
My thyroid biopsy showed no cancer but diagnosed me with Hosimoto's Disease - an auto-immune disease that attacks the thyroid and eventually kills it. They will start me on meds when I am worse than I am now.
I had multiple X-rays and scans and have developed sever osteo-arthritis in hips, pelvis, elbows and knees. They are sending me to aquatic therapy to help build up my muscle mass to compensate for my deteriorating bone/joint strength. They believe this is also being caused by an auto-immune disease.
Likely all from chemo, possibly herceptin and steroids and a year of being mostly on antibiotics.
I feel like most of you will get it when I say I felt better hearing that they found something, even thought I am a bit frightened of degenerative anti-imune disease, I at least don't feel crazy.
Working on next steps now. Emotionally I feel like I "passed through" a door about a month ago and am doing much better. I think there may be something to that needing one full year from the end of chemo - I ended chemo a year ago and ended Herceptin 6 months ago.
I love all you ladies so much. Sending you positive thoughts, gentle hugs, lots of "totally getting it" and so much more.
Julieho
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I sure do get it! At least you know what it isn't, can move forward from there!
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Julieho, I have had Hashimoto's disease since I was 16. The side effects are managed with daily thyroid medicine. If you are having symptoms, (thinning hair, sensitive skin, weight gain, painful joints, etc. ) then you should be getting treated now, not later. Thyroid blood testing can be tricky so be sure you have a good doctor or endocrinologist who can interpret the results.
But don't be frightened. It's very treatable.
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@ Julieho, I have so many symptoms going on with me but when they don't find something from the test it makes me feel like I'm crazy. I had to change my prayer. I used to ask God not to let them find anything but now I'm asking Him to reveal whatever is going on to the doctors. As I mentioned in my post I have this lump on my neck that the doctor wants to watch and sharp pains on one side of my neck that feels like it's in my veins, results from my blood work that are high and low that she wants to watch, a cyst somewhere,and blood in my urine no one seem to know why I'm having it... so I truly understand not wanting to feel crazy. It's like when they don't find something they look at you like it's all in your mind.
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I met a woman the other night who is stage 4, and has the same oncologist that I do. When she was complaining to our doc about fatigue, apparently the doctor responded "I have 3 kids! I know what it's like!" and basic told her to stop her whining. This infuriates me. If an oncologist (supposedly one of the top oncs in the country) doesn't understand the difference between cancer-related, chemo-induced fatigue and being tired from work and family, then how will anyone else understand?
Dlia, good luck with your tests and with finding some resolution.Julieho, sorry to hear the diagnosis, but as you say, at least now you know what it is and what can be done. The waiting (and, if you're like me, imagining that any weird symptom means mets) is the worst.
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cfdr - Your oncologist is an idiot. How can she/he be so dismissive of cancer related fatigue, and call themselves a cancer doctor? That makes me so angry! Three kids might be tiring, but they are a choice and they also bring joy. Cancer is tiring, it isn't by choice, and it brings no joy whatsoever.
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Thanks everyone. I'm back to the frozen popsicle of the country, Chicago. I can't believe what it's like here...more like Alaska or the Antarctic while there was no snow on the ground in New york and we had some 50 degree days.
Everything you guys write just resonates with so much truth. Today is a week since the operation and I've been pushing myself too much. I saw the surgeon yesterday and he told me to listen to my body. The incisions are small but the operation was big. So I'm going to give in to the fatigue and rest! Easier said than done of course.
About the wobblies. How do we come to terms with the fact that we're all mortal? I think that's the bottom line. It's just too big a thing to accept.
So we fight our hardest to live and live well.
Anticipation is growing. Path report will tell the whole story soon.
Being in New York, I somehow felt removed from the reality. But being back here is a let down. Reality.
Well, I'll try to rest up and gain strength to face what lies ahead. And all of you...you give me such strength, I can't tell you. It's a kind of home here. Love you all!
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Timbuktu - great to hear from you, it is a big surgery and you need a good 6 weeks of rest and relaxing, even though there are no big external incisions.......take care xx
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Tim...so happy to have you back on here. Glad you are past the hurdle of surgery. We all get the anticipation of the path. report. There's no 2 ways about it...it just sucks. But...you can handle it. You have been through so much and you made it. Just take it an hour, minute, or second at a time (whatever you can) and keep us posted on how you are doing. Be gentle with yourself. I hope you can get some rest. You deserve it.
Julieho...sorry you are dealing with Hosimoto's but at least you know what it is and what to do. That's half the battle.
Janet...rockin' new picture! You look awesome. I know I owe you an e-mail...sorry for the delay. Way too much going on here these days.
cfdr...Janet is right...your oncologist is an idiot as both and oncologist and as a person. Where is the compassion? I swear some of these doctors need a lesson in kindness, listening and compassion. Is it really that hard?
Spookiesmom...I can't get the picture of Spookie cleaning the floor out of my mind...too funny!
Jeannie...congrats on 1 year post-chemo.
dlia...you are so right the another's story is not our story. A very simple truth, but I often need to remind myself of it.
Holeinone...you are almost there! Is today your last day, or did I do the math wrong?
Flutterby...your daughter sounds wonderfully supportive.
Bluebird...welcome. Good to have you and your insights on here. When I was first diagnosed with bc, my brother (who had been treated extensively for colon cancer) asked me if I was scared. Of course, like any brave warrior, I lied and said no. Then he told me not to be frightened and I have never forgotten that. It's amazing how someone who has been through it can say something like that and it is very helpful.
Hello to everyone else!
Love to all!
Rabbit
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I really appreciate you ladies! Julieho, I hope you feel better soon. Janet, I wish I could carry you in my pocket and have you cheer me up all day!
cfdr, that MO would really upset me. I did have to have a talk with my MO's PA about my MO! Things just weren't how they should be. My MO took it really well and has made a good effort to improve our communication. It took balls on my part to say anything but it gets easier to do so as I get older! You know it was after Dr. Susan Love, author of The Breast Cancer book, recently recovered from leukemia that she said she now understands her patients. She is training for a marathon!
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Jeannie - I'm in!
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Tim, wishing you the best as you recover. Time to make that list of movies you've been meaning to watch and books you've been meaning to read and naps you've been meaning to take.
Jeannie, my onc's PA told me at 5 months that I shouldn't still be fatigued, and had me to go to my PCP for thyroid tests (which were negative, but that's when they discovered the pernicious anemia). When I came in the second time post-radiation for the "moist reaction" that was more painful than surgery, my rad onc called me a "troublemaker". My skin was falling off in chunks and I couldn't wear clothes. Excuse me??
I don't wish cancer on my cancer docs, but I do think they could teach a class in what this is like from the patient's perspective, and how they can practice empathy rather than contempt.0 -
@Rabbit, when I got diagnosed two of my sisters were already dealing with it... one sister said that she couldn't do chemo because of how she felt after her first treatment. We had to talk her into continuing. The other sister said to me keep living do what you need to do, do want you want to do, do what you have to do... don't focus on it just live!! She not only talked the talk but was a good example for me, she did just what she told me to do... she was a fighter and that's where I found encouragement. Her cancer was so aggressive and had spread to other organs but she kept fighting. If you talked to her you would never know she was dealing with cancer or anything else...
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cfdr,
Moist reaction ? What is that ?
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Dlia...thanks for sharing that. My brother was exactly like your sister who said to live your life. He was my inspiration. Interestingly, he was a physician. He had to stop working, but found a compassionate side that he didn't have before colon cancer. He had mets to the lung and liver and an unrelated leukemia diagnosis but fought through it all and kept his sense of humor the entire time. It was unbelievable.
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This is like "home on the range". Never is heard a discouraging word! Keep it up guys, you are a buoy in stormy seas. Oy, I'm mixing all of my metaphors! But I know you'll understand!
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Timbuktu, hello, I have been thinking about you, I went back and reread a few pages. I am the newbie. Hoping you are comfortable and able to stay on top of the pain. I had a hyster back in 2000, because of fibroids tumor & severe anemia. Obviously your is different, scarier. I remember feeling weak for a good month.
DH & I are looking forward to the Olympics, I am parked on the recliner anyway....lol...
Tomorrow is my last radiation zap. Then they set me free...ahhh. I get Arimidex next week.. I am getting the ? "What are you doing to celebrate" ......do not feel like a celebration, feels more like a bad nightmare..
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I hear ya Holein one.
I had the Robotic/laproscopic surgery and although it's only been 8 days I have no pain. In fact, the pain was gone by the second night. I am not supposed to lift or drive or do much of anything but walk. It's hard in a way because I have energy! So, I'm going through my accumulated catalogs and ordering up a storm! I'm making a bet on my surviving long enough to wear the new clothes. If not, it's less for wife number 2!
I had very very heavy periods for a long time and ignored them. Bad idea. Hindsight is 20/20!
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Has anyone's vision changed since chemo? My vision has changed 3 times...
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Holeinone, moist reaction or desquamation is when the skin thins due to radiation and begins to weep. I had it happen to me. It's extremely painful and I lost whole sheets of skin. It was the most painful thing that I've ever gone through. Here's a photo of me when it began, if you are not squeamish:
http://community.breastcancer.org/topic_post?forum_id=70&id=810514&page=35
Congrats on your last zap!
Timbuktu, that is awesome that you have no pain so soon after surgery! Your comment about less for wife #2 cracked me up!
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Bluebird,
Ok, that looked very painful, mine looks burnt & rashy but nothing close to your poor skin. Sorry you had to endure that. Are you now waiting for the exchange part? I had a lumpy so I do not know much about reconstruction, except, it looks painful.
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cfdr, you have had such bad luck with your docs! I wish I could set them straight for you! I, too, had my skin fall off after rads. It was the most pain I've ever experienced. I loved my rad onc but there wasn't much he could do. I'm glad it's a distant memory for you and me and becoming distant for Bluebird! Holeinone, hang in there. By the way, Bluebird has been through hell and back and I admire her immensely!
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Yes, I think my vision has gotten worse. Although, the measurable difference is slight.
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My optic nerves swelled up in one eye and I have permanently lost my peripheral vision. It happened nine months after chemo ended and one month after my last recon. surgery but the eye specialist couldn't relate it to either one. I just pray it doesn't happen to my other eye.
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holeinone, I am just starting the expansion process on my right side. I lost a flap. The horrible burnt side in the photo is my "good side."
Thanks Jeannie. You have all helped to keep me going.
I hope your eyes adjust and you have no more problems!
Just wait til you see your new nips! Hubba hubba!
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