| Dancing in Limbo |
[06 Jul 2009|09:33am] |
I have wanted to update so many times here, but words still arent' coming easily. In the meantime, I wanted to share this book recommendation from a lovely woman I met at a painting workshop for adults living with cancer this winter. Outside of therapy and copious amounts of quiet time in nature, it's probably been the most insightful and actually helpful resource for me during my initial recovery/grieving process. It's not Breast Cancer specific, and I didn't relate to everything, of course, but it touches on this blurry time of transition into life AFTER cancer in a way that spoke to me in a time when I found relating to anything, including myself, challenging at best.
Dancing in Limbo: Making Sense of Life After Cancer by Glenna Halvorson-Boyd and Lisa K Hunter
Libraries should carry it and you can buy it used from Amazon for under $4 + shipping.
( Here's a review that sums it up better than I can )
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| my aunt |
[05 Jul 2009|09:38pm] |
Just found out last week that my aunt has breast cancer. She had a mammogram done last September and they didn't see any thing. A couple of months ago she was doing a self breast exam and found a lump. She went to the doctor and went through some testing and they told her it was cancer. I pray that they found it early enough but now she has to make the decision on what to do. This shows the importance of checking yourself. She is 46 years old and as far as we know she is the first woman in our immediate family that has had breast cancer. Please keep her in your thoughts and prayers. Her name is Sharon. I'll try to keep everyone updated on what is going on.
Thanks for listening.
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| Hi, everyone! |
[15 Jun 2009|10:24am] |
I've been lurking here for a while, watching; this is my first time posting.
I was diagnosed with breast cancer in February, had a double mastectomy, and just finished my four rounds of adriamycin. I started taxol this week, and I'm happy to say that this new drug has been VERY kind to me. Compared to the AC, I feel awesome. I can't believe I'm getting chemo and feel this good.
I have kind of a weird question for everyone. Actually, it's more of a need to vent frustration. Did/do germs freak you out while you're getting chemo? I'm getting Neulasta shots, and my white counts haven't been too low, and my oncologist says that I'm not really at a higher risk than anyone else to succumb to an infection.
Nonetheless, it's still a phobia. I don't know if it is because of the H1N1 scare in the media, or because I have spent the past 4 years working as a pediatric RN for immunocompromised kids and have seen some get really sick really fast, but I'm just a bit frightened of microbes.
Anybody else have this problem?
Best wishes!
-Ami
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| Quick Update (cross posted from my personal LJ) |
[05 Jun 2009|07:40am] |
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I realize I haven't posted here (or much of anywhere) for awhile. I do keep up with facebook status' though. :) I am just beginning to get a burn under my arm from radiation. I've done 15 treatments and have 20 to go. I plucked my first gray hair this morning. I'm doing Relay for Life tonight. My insurance won't cover Zometa as preventative. Gonna be a bridesmaid the middle of this month; hope I'm not too burned to wear my fake boob. Don't see my medical oncologist again till the end of the month. "Did they get it all" and "Are you gonna be ok" are questions I am sick of hearing because there is no answer to them. Cody's grandfather (who he was really close to) is in a nursing home, probably close to death. I used to be sad when I saw old people because they looked so frail; now I just hope my body has the strength to make it to 'old.' Antidepressants are starting to kick in I think; I haven't cried in almost a week. Need any clarification on the above, just ask! :D
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| When? How? |
[01 Jun 2009|10:23am] |
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I know the answers to this question will vary, but here it is:
When does my time as a survivor start?
I was diagnosed 1 year ago this month. I had 2 surgeries, chemo, & radiation which ended about 6 weeks ago. However, my cancer is metastatic which leads to the next question:
How will I know if I have another metastis?
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[31 May 2009|12:30pm] |
This is my first post here.
I don't have cancer. I'm here because my mother died of breast cancer 3 days before my 7th birthday in 1996, my grandpa followed 4 years after that with prostate cancer, and my grandmother went 4 years after him with cancer pretty much everywhere. They never found where it originated.
I'm no stranger to the effects it has on families.
I just wanted to say that you're all the strongest and most wonderful people. It takes so much to battle cancer, from the person and their family. I sincerely wish the best for each and every one of you. You can beat it, I have faith in all of you.
You're all an inspiration.
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| When do they stop? |
[21 May 2009|08:12pm] |
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I have been so up and down the last few weeks. Does anyone know when the moods calm down and my patience comes back. I am sure that people are tired of me being moody and bitchy. I do take meds and they work most of the time and i do have a support group. I also know that part of it is because my period has returned. The joy of triple negative/no hormone involvement- there is no hormone suppression therapy post treatment- but all the docs still say no birth control for me. GRRRRRRRR. I am just tired of feelings that are all over the place. Thanks for listening.
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| Here is a tatoo I think is great. |
[21 May 2009|08:08pm] |
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My friend got this tatoo to support her mother who is a survivor. i like it because I am a big butterfly fan. It makes me happy when I see it.
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| Treatment Choice, TAC or TC |
[19 May 2009|02:59am] |
I'm hoping to find some help in making a choice of treatment. I have Stage IIb IDC 2.8 cm, +3/16 nodes, ER+/PR+ Her2-. I had a single mastectomy and am now heading for chemo. My onco offered me a choice, and I don't know what to choose. I could have Taxotere/Adriamycin and Cytoxan which has been the standard treatment (either as ACT or TAC) for my type of cancer; however, he says that recent studies have been showing that Adriamycin only really benefits Her2+ cancers and TOP2a cancers. I don't know if I am TOP2A. It's likely I'm not.
Has anyone here been tested for TOP2A?
Has anyone had to make this choice?
I don't want to skip anything that will help, but I'm not looking forward to the side effects of Adriamycin either. If I really didn't need it, I'd like to skip it.
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| Pink Ribbon Tats |
[15 May 2009|09:24am] |
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Was thinking of getting my first tattoo(have always wanted one but hubby was against it; finally said just do whatever, lol). Any of y'all have neat pink ribbon tattoos? How does the pink color hold up?
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| Mudfest '09 |
[04 May 2009|03:00pm] |
Memphis in May has a music festival. The reason I'm posting my pictures from it here is because it was the first time I've left home without a hat or wig or scarf in awhile. Thought some of you might enjoy them. :D
Pictures of us and then the concert pictures are of KoRn (who were awesome, of course).
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| Cross posted again from Personal LJ, Doc appointment 2 |
[29 Apr 2009|07:44pm] |
Somewhat happier news to share today, thankfully. :)
--Drain got taken out, woohoo! Didn't hurt a bit to take out, and am so happy that I will be able to sleep in my bed tonight! (Been sleeping on the couch for fear of rolling over and pulling on drain tube, which hurt even when it wasn't being pulled.)
--Saw medical oncologist today (chemo doc, drug doc, hormonal therapy doc, etc.) Everyone who has heard who I have as my doc has said he is one of the best in the world, and after today I totally believe it too.
--What we discussed:
--Radiation:
--Will start as soon as I heal enough. Have an appointment next wednesday with my radiation doc. Will radiate a larger area than originally intended based on my lymph node status.
--Tamoxifen:
--This is the drug that attaches to estrogen so it can't feed the cancer. This was already on the menu for me to start taking sometime soon. He said why wait, gave me a script and I started today. It's a daily pill, for about 5 years.
--Lupron:
--Something I found out about on internet, it is a way to supress your ovaries, putting you in to menopause, so they don't produce the hormones that my cancer feeds on.
--Was going in there, all ready to ask about it and push for it, etc. and he totally up front agreed with me and said yes, we should add that to the Tamoxifen. Got my first injection of it today, will get it monthly for awhile, and then when we know for sure that it has shut down my ovaries, will get it every 3 months, for around 2 to 3 years.
--Zometa:
--Something else I found studies for on the internet. It's actually given to women to help with bone loss. Older (post-menopausal) women can take different meds than Tamoxifen, but they cause bone loss (or maybe it's the Lupron that causes bone loss, I forget?). Anyway, there are fairly new studies out that seem to show that Zometa actually prevents recurrence of breast cancer. It's not ready to be fully used for that purpose yet.
--Doc agreed again, said it can't hurt, will probably help prevent at least recurrence in the bone, so let's do it. I'll start that next month (he didn't want to throw all 3 at me at once). It's a 15-minute infusion drug (given like chemo but without the side effects) that I'll get every 6 months.
--One reason I really like this doc is that he not only agreed with wanting to give me everything that could possibly help, but he already knew about the studies I was mentioning and even some previous studies in other countries that I didn't know about. He is up to date on everything it seems and is willing to try anything to help my chances.
--We are going to continue to use PET scans as screenings, but also blood work. The blood will not only tell us about liver function, but there are some things called tumor markers that may be of some use to look for (though he said its not a proven way to detect cancer, it can't hurt to look for them anyway).
--Not sure how much I believe this part (will have to do some more of my own research), but doc believes that by using all 3 of these tactics, we can increase my overall 5-year survival rate to more like 70%! And my disease free survival rate (chance that I will not have a recurrence in 5 years) to 60%. So that's a good bit better prognosis, now that we are throwing everything we can at the cancer.
--It's still not the greatest prognosis, and you could tell by the way everyone that read my report asked how I was doing that they know how serious it is. But I feel better just knowing that we are trying everything we can.
--Also, Cody and I made an appointment with the psychologist at the clinic, and we are going to ask her to refer us to someone closer to where we live. We feel like we are taking everything fairly well (of course, I am up to 2 anti-anxiety pills a day) but we want to make sure we don't spiral downward (plus Cody is not on any medication and is stressed with work and his ailing grandfather as well as me, he may need it more than I do!).
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| Climb to Prevent Breast Cancer |
[28 Apr 2009|05:40pm] |
http://breastcancer.care2.com/
That's a link to a site where your free clicks will generate donations (from advertisers) to support the prevention of breast cancer. I click every day. It's free and easy and I think it does some good.
I'm also a member of care2 and try to help out with their other causes.
-- Elizabeth
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| My update (post-mastectomy appointment) |
[28 Apr 2009|05:46pm] |
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I just copied and pasted this from my personal journal, read if you feel like it. It's more detailed than y'all need since I was posting for people who don't know as much about breast cancer, but I didn't feel like cutting it down for y'all! (Main points are 9 nodes were positive after neoadjuvant chemo and mastectomy which is prognostic of about a 50% overall 5 year survival rate; more than 9 nodes, which I could possibly have, is prognostic of more like 25% OS rate.) ( More here )
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| Mastecctomy Question |
[23 Apr 2009|09:17am] |
Hello ladies. In August it will be 2 years since my bilateral mastectomy. I seem to have a LOT of scar tissue. Does anyone else feel this way?
I should just make an appointment with my surgeon but I don't have insurance until June 1st.
Any input?
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| Path report |
[21 Apr 2009|05:32pm] |
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Chemo before mastectomy, mastectomy last week. Doc just called and said 9 out of 10 nodes were positive. Also said that the area where tumor originally was (a 7 cm tumor that shrunk to 1.3 from chemo) remained positive, even though the mammogram made it look like only tiny spots of cancer left. I have tons of questions for him that I'll ask next Tuesday at our appointment. Does anyone know in general what this means though? He said we would do radiation, which was the plan anyway, and no need for more surgery. So it seems like it doesn't really mean much, but he kept saying he wish he had better news for me and such. I'm guessing this means I have a poor future prognosis...
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| Did that! |
[20 Apr 2009|06:10pm] |
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Just a quick update about what I've been doing -
Bilateral mastectomy - Aug
Left axillary disection - Sept
Thyroid removal (there were multiple tumors) - Oct
Chemo from Nov - Feb
Radiation from Feb - April
Today was the last of 33 radiation treatments!
Hormone therapy starts tomorrow.
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| Babies after cancer? |
[07 Apr 2009|11:05pm] |
So, my husband and I had our first appointment at the fertility clinic. I'm 41 years old and have one special needs son who is two. He is the only child of his generation in either of our families. I had a mastectomy and axillary dissection to remove a 2.5 cm invasive ductile carcinoma, with three of sixteen nodes positive for cancer cells. My tumor was estrogen and progesterone positive. I've got a couple of weeks until my last period before chemo to decide whether to gamble on expensive in vitro fertilization (IVF). Since I've got one shot at it, and I'm a bit past my "sell by" date, they will hit me with the maximum dose of FSH and thus estrogen. There is the possibility that I could combine that with letrazole to reduce the risk of stimulating any stray cancer cells.
My questions are many at this point. Survival is a huge priority with me. Does anyone know how much risk of reoccurance there is with either fertility treatments or a second pregnancy? Has anyone else had to make this decision? What made up your mind? Has IVF post chemo and post tamoxifen been successful for anyone?
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| Tissue expanders after radiation |
[07 Apr 2009|09:38am] |
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Met with plastic surgeon yesterday. He said you can do tissue expanders and implants after radiation, by using a latissimus (back) flap. Anyone had this done or know about it? I think I'd love to go with implants and treat myself to bigger boobs, lol! :)
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| port is finally out. |
[05 Apr 2009|10:13pm] |
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I got my port out. Now I really feel like things are moving in the direction of being done. I am still not sure what I am going to with that time I don't spend at the doctors. I am sure I will figure it out quick.
I have to say I had a freak out. My left breast (unaffected) was hurting really bad and I made my regular doctor feel it just to make me feel better. I hope that it gets better when it comes to aches and pains and not thinking the worst.
Otherwise things here are looking up.
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