Why was I stronger DURING treatment than I am now?
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cfdr, go for that art and i will too! i have been threatening to for a long time. i am the only one putting pressure on me, it is astounding how lazy my boyfriend is allowing me to be! i am a virgo, and was always very organized! no more! and i only do stuff when i absolutely have to! take me to the beach and i will walk for miles though.
holeinone, i had that bursting out cancerous nodes too, and it really creeped me out. that is why i was surprised i wasnt already stage four..
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Kathec, yes, extranodal extension.....it is my constant worry. The Dr. Susan Love breast cancer book states that as a "special situation" with a "bad prognosis". Arrrggg. No wonder we are lazy space cadets ! I have been painting, but walls & shelving...it is rewarding, cause it looks so much better. We are getting our house ready to sell.
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How did the first Zometa shot go? I have to go to the dentist and then have it done and I'm pretty darned scared. Of course everything has frightened me and somehow we walk through it. We have no choice!
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Tim, my infusion is tomorrow, Friday.
The first time ( last April ) I was achy & tired. I have read that the side effects get easier each time you get the infusion. So, hopefully it goes well. I am most concerned about what my WBC will be. It has been very low. MO says don't worry, I am just someone who has a chronic low WBC. On my very first chemo infusion, the pharmacist mentioned that the cancer might be in my bone marrow, since my WBC was so low, and I had not had chemo yet. Frustrating.....I will check in tomorrow afternoon & let you know.
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Thanks. I screwed up my courage and against my better judgment had my flu shot yesterday. I'd asked for the milder form, for under 65 but they gave me the stonger. I feel lousy today. tired, heart palpitating. I was shopping and felt like I might faint. should have waited longer! Next zometa. I just want to feel good!
Well, Zometa is supposed to really help prevent recurrence and that's the big pay off!
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I kept thinking, "get the flu shot", but I just could not force myself to do it ! My new plan is a week to ten days after the Zometa...I did not know there was 2 different types.
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i never have, and i really dont want to get a flu shot.
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Only a few weeks out from chemo and only days after finishing the antibiotics for my Lyme disease, and still anemic from my ulcer my dr wanted to give me the stronger version of the flu shot. I asked to wait. He threw his head down on the desk in mock despair. I said I felt too weak. He said that's why I needed it. I think I need a new dr.
So I waited a few weeks, and feeling stronger at last had it done. I wish I'd come on line first.
I guess with all of the talk about ebola and enterovirus, which has no vaccine, I thought i should do what I could to avoid a bug. But it was too soon. I just hope it doesnt wear down my immune system to the point that something worse happens. I'm used to feeling lousy, I just hope I didn't tip the balance.
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Jeannie, it's pretty amazing you know 2 people with Waldenstrom's. Only 1500 people a year get diagnosed with it in the US. I was diagnosed with it in 2009, but who knows how long I've actually had it. I'm fortunate that it's just sitting there not doing much. I'm on "watch and wait" status since they don't treat it until there are symptoms that are problematic. It could stay like this for years or kick into high gear at any time. No way to know. Thanks for the good wishes.
cfdr, a lot of the other women I know seem to have bounced back faster than I have also at least as far as they let on. But then I probably look fine to most people also. I go to work. I keep it together and function in public. It's at home that I come apart. Most of the other women I know who've had cancer also were earlier stage than mine and didn't have to have a bilateral mastectomy. They also hadn't had 2 prior cancers. I think it all has just started to add up to too much. Enjoy the art. I'd love to quit my job. I'm making myself hang in for a couple more years unless I have another health crisis. If that happens, I'm out of there.
I'm going to put my vote in for getting a flu shot. My immune system isn't great because of the Waldenstrom's and breast cancer treatment hasn't helped. I eat tons of fruits and veggies and live a generally healthy lifestyle. (Which begs the question of why I've had cancer 3 times, but I digress.) I don't catch colds or any of the rest of the illnesses that make the rounds any more often than anyone else, but I'm not risking the flu. A couple years ago my husband didn't get his flu shot and ended up with the flu. Since I was living with it in my house, I got it also then ended up with pneumonia. I've never had more than a slightly sore arm from the vaccination so I'm sticking with that. And DH gets his now too.
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Hi All,
I go the flu vaccine the November following bc dx, 3 days laterI had to get the doctor out as I had erm, flu. I just got my letter through asking to come in and get it this year, but I don't think I will. But I am a little worried as having the Diep procedure on the 24th Nov.
It's a tricky one.
Hope everyone is reasonably ok today.
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I will take a flu shot over vegetable juice any time. I don't believe for a minute that consuming a few extra vegetables is going to prevent me from contracting a highly contagious, potentially fatal disease.
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I always get a flu shot but I'm not sure I did during chemo. With bilateral lymphedema, I now have to go to the doctor and get it in my upper hip. A tiny needle was used and I didn't feel a thing, felt fine afterwards. I have had pneumonia twice so I feel I need it. I have had the pneumonia vaccine, as well.
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Wintersocks, the flu vaccine, at least in the US, uses killed virus so it can't give you the flu. That's the only reason I can even get it. Since I'm immuno-compromised from my lymphoma, I can't have vaccines that use modified live viruses like the shingles vaccine. Those are safe in a person with a healthy immune system, but not somebody like me. Flu vaccine though, is ok. I bet you were incubating the flu before getting the vaccination. It definitely wouldn't be protecting you yet after only 3 days. I think it takes a couple weeks for your immune system to build up some antibodies in response to the vaccine. All of this is not to say that you can't have a reaction to the flu vaccine that can make you feel lousy. If you go in soon to get it though, any reaction you have should be well over by November 24th. But everybody has to decide what they think is best for them and their situation.
Jeannie, I even got mine last year, but I think I waited until after chemo was done. I can't remember. I did go to the doctor for it and get it in my hip though since I'm at risk for lymphema in both arms. This year I forgot about that and just got it at work when they had a flu clinic. I did get it in the arm that hasn't yet actually had lymphedema. I probably should have gone to the doc and gotten it in the hip, but I just didn't think about it. From what they told me at the cancer center, there isn't a lot, if any, evidence that needle sticks cause lymphedema. If you already have it, that may be another story. It's such a pain, isn't it! But I have no choice but to have blood draws and IVs in my arms. I don't have a "good" arm.
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My MO acknowledged chemo brain, but not fatigue. Don't these doctors keep up on the research in their field?
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2tabbies, with LE in both arms, I have to have blood draws/IVs in my foot. Not everyone knows how to do it and my veins don't always cooperate. It is very painful. My PA at the cancer center says I could get them in my arm but it scares me too much. My LE is under control and I want to keep it that way for as long as possible.
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Jeannie, I asked about doing blood draws and IVs in my foot, but they won't do it because there's more risk of developing a blood clot. At least that's what my MO told me. So we do it in my arms, and I hope for the best. I've already got lymphedema in 1 leg from my ovarian cancer surgery. It's the pits. I had 1 episode of it in one arm also, but it hasn't come back. I hope it doesn't.
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Oh! Nobody has ever told me that and I've been getting foot pokes for almost two years. And I'm on Tamoxifen which increases clot risk. I do take low dose aspirin every day for other issues, so hopefully that helps.
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I'm on Tamoxifen too. So far no aspirin.
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BosumBlues, my problem with Tamoxifen is bad mood swings. Effexor and gabapentin have helped, but I still fall into the black hole of depression or fire pit of irritability some days. I also have hot flashes, but these two meds have tamed those fairly well.
The fear doesn't consume me either. I have more problems with anger about this whole thing. But I'm reasonably functional. I'm getting reconstruction on November 11 - latissimus dorsi flap on the radiation side and a TE on the "good" side. I hope it helps me feel better and move on also. Some days I feel like a failure because I can't just accept my flat chest and regard my mastectomy scars as badges of courage like some women do. I didn't really think I'd care that much since I'm not a girly girl. But I do care. A lot. What a surprise!
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....it's so funny, before cancer, I never really thought about my body too much, except to look for flaws: you know, funny toes, a big mole on my face, consistently bad hair, one boob bigger, and a boy butt and straight waist, knobby knees, etc. But i always was pretty proud of my strength, endurance, outstanding balance, etc. .. now i am just still pissed off about the whole thing too, and tired of hurting, tired of lymphedema (now its trying to sneak into my hand)... and just the crap that goes along with A.I's...
I am just mourning the days when i would hit the ground running, and JUST NOT BE REMINDED of my body, every waking minute. AND NO, i am not OLD!!! I was almost 53 at dx, i am barely 55 now, thats only two years older, and THAT is STILL NOT OLD!!! crap
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kathec, I'm right there with you. I'm 57 and do NOT think that's old. I so miss the days when everything worked, and I didn't need special "medical devices." I have lymphedema in 1 lower leg and foot from my ovarian cancer surgery. It's starting to creep higher up my leg. I have to wear a knee high compression sock during the day and sometimes a neoprene bootie at night. (So sexy!) I hope I don't end up needing a thigh high stocking. Then there are the orthotics, the breast prosthetics, etc. What's causing me the most grief right now though are the mood swings from Tamoxifen. The hot flashes sucked during the summer. It seemed like I was never the right temperature. I never, ever hated my body before this, but it and I are not on really good terms now.
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I am 57 too, diagnosed age 55,,,,,,,,,,
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I'm 53. Dx just days before my 50th. Boy, do I feel old too.
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There are days I feel like I should go be my 96 year old mother's roommate at her assisted living facility. I'm only half kidding!
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This article is about Chronic Fatigue Syndrome...they have found evidence that there are brain abnormalities in CFS sufferers. CFS is not cancer-related fatigue, but I wonder if someday they may find similar evidence for those of us suffering through fatigue and chemo brain.
http://www.iflscience.com/brain/brain-abnormalities-discovered-patients-chronic-fatigue-syndrome
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I was diagnosed at 41..now 42. I feel extremely old...and pissed off. I didn't feel old before a year ago. Now everything gets stiff if I sit or lay too long. I can go through almost every body part in my mind before and after cancer & list some sort of change I am now experiencing (obviously not for the better)...from my finger joints suddenly being too big to fit my wedding ring to my hair to my sore feet.When I first started following this page, I mentioned my inability to figure out how manage being sad, angry, tearful, anxious, pissed, frightened. Some days are better than others, but it is still a struggle. Zoloft has been helping so I can at least get my anxiety under control & sleep.
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.....I am sorry for all of us, you guys. It just pisses me off, that when you go in for the consult for chemo, they hand you a couple of badly printed pages, that say you MIGHT experience SOME of the following, and then proceed to list a few things.. really quite down-playing them. It all comes back to informed consent. How can we feel any thing but pissed off and rail-roaded?? I mean, i knew there would be baldness and nausea and fatigue, because we all have known someone with cancer before. I think of two ladies i knew that had it. one, she only had sex a bout once a year, with an out of town lover. And she told him not to come for two years. And then when he finally did come, she told me she told him to never come again. several years later, she told me it was because it hurt, and she bled. and she really grieved over the loss of that part of her life. Neither her nor I equated that with the chemo she had done for stage 4 lung cancer. But, I did know about neuropathy, as she had it intensely bad, having recieved two platinum therapies at the same time. As she had been quite a talented seamstress, she also did mourn how clumsy she had become. it was so effective, she lived for ten more years, but she stopped talking about it and put on a bright face. And my other friend had tx for breast cancer 25 yrs ago. when it came back, she was stage four, and I never did see a braver woman, and while she did not sugar coat it, she really did not let others see when she was really bad.
I guess they were happy to be alive. Well, of course i am too. but I am not going to stop bitching, and when someone asks me about it, I will tell them the truth. Because it sucks. And even though they have come a long way in reducing the bad effects, THAT is why i will complain, because i dont want the docs and researchers to get complacent and think "oh hey, no one is complaining about the effects any more, guess we can stop worrying about THAT. And I want other women to be more prepared than I was. I think being prepared instead of surprised is part of it for me. For one thing, it would have made me look less stupid, when bringing EVERY LITTLE THING to the attention of my doc and nurses. They probably thought I was stupid, and a wimp. and that IS embarrasing to me. But that does not discount the very real effects of hormone therapy.
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I am 2.5 years on from diagnosis and basically falling apart emotionally......I shake inside ALL the time, with no thoughts attached.......I can walk in to a shop, stop at the shelf and everything inside starts racing, heart breathing the works.........I never feel safe or relaxed or rested.........I never feel a sense of joy or happiness, real happiness...........even as I write I feel like I am taking the most important exam in my life......what I am doing differently is telling real people the truth about how I feel but I am not sure it helps as I cry at the drop of a hat............more and more I wonder if the emotional struggle is worth it..............nothing reaches me now, relationship is over to all intents and purposes, no job, no money, don't feel safe living where I am due to constant harassment by a local.......been to Court a few times over it but he just escalates.........is it worth really struggling???
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Lily: I have to rush from work right now, but I couldn't leave without telling you that it is worth the struggle that you are feeling. I wish so much we could give you a physical group hug. Most of us know the low and hopelessness that you may be feeling. I used to go to therapy and want to again. Some women really benefit from Effexor or other types of anti-anxiety. Is your doc aware of what you are going through? Please hang on and lean on us. (((((love))))
Purl
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