Starting Chemo in JAN 2007

NOLONGERREADINGORPOSTING

Well barely, it is now 11:30 AM. I decided to let myself sleep as much as I needed to. I DO feel a WHOLE better but I have a very small and truncated day to look forward to, and how on earth will I get to sleep at a decent hour tonite?!!

Radiation gets very tiring right at the end, and I had my last *Big Shot* yesterday. Now I get little zaps to the scar. They say that you can get recurrence around the scar because the surgeon may drop little cancer cells there, but there is no way to detect microscopic cancer, so they just go ahead and treat you as though you have it.

My heart does fine when I am not tired. I am wearing this monitor for a month, and then they'll evaluate what's going on. The arrhytmias are short lived, they do get established as they did before my cardiac ablation, so it's not really scary.

Some of you are wondering who Mena is...Mena is a BC sister here. She was dx'd in '99 and was diagnosed with mets in August of 2006, when she registered on the boards here. She is an incredibly dynamic, fun loving, warm, caring person and she brought the boards alive with her humor and compassion. She is very much loved by many women here, especially those Wagon Circle women.

She started the *Mojo* thread, which is full of great information about how to deal with libido problems during treatment. It all started very innocently and then practically turned into a Soft Porn thread, but is still fun. Anyway...the story of her life is in that thread.

One night I found it about 2 am and stayed up ALL NIGHT reading about Mena and her life, and found out that she lost her husband...after all that worry about maintaining their sex life he just walked out on her one night...and broke her heart. Around six AM I began PMing her, and she was ON!!! She began PMing me back and we talked back and forth, and we've been friends ever since.

She went through a very bad time with her family last January and stopped posting; this was about the time I started chemo. For a while I was the only one she was talking to and believe me, I was a lot more worried about her than I was about my chemo. Then just when she was coming out of it and feeling better, she found out that her tumors had started to spread.

So that's part of Mena's story...sorry to make this such a long story, but whenever I post here I cannot help thinking of Mena, and thinking what a wonderful warm friend she is, and how much I'd love to see her back here again, happy, the way she was when we first became acquainted.

DH and I are going to read the healing service from the Book of Common Prayer for Mena this evening when he gets home from work. I would so much love for someone I know to get a total and complete cure from this Beast!!! And I think she can.

Sorry to make this such a long post!!!!

Thanks so much for your prayers!!!

xxxooo Mizsissy

meliaanne

Ok girls, I am losing it. Who is having an mri? I missed it and can't find it.

Rebecca

Hey Melia...that would be me. It is over now, and the waiting begins. I will say that the MRI machine makes interesting, almost beautiful rhythmic sounds which I would have enjoyed more if I was not so sore and uncomfortable....it has been a rough week on my chest...expansion, Radiation setup and now lay on your belly for 45 minutes and do not move while your breasts are sticking out through two small holes in a metal plate. The magnet also tugged on the port in my expander, and that felt a bit odd as well. I will post the results as soon as I hear!

NOLONGERREADINGORPOSTING

Joni...great to see and hear from you. Enjoy everyday. That's what you should do and what all of should do, because as Mary said, the joy of living is not knowing ahead of time what is in store.

Mary, so sorry about your BIL. Hope your family recovers soon. Hey, when are we going for that bike ride? I'll probably be OK in a few weeks.

Melianne, I am not surprised you are having trouble keeping track of things..we have such a large group now it's very hard to keep up with everything that's going on.

I apologize to *everybody* for not being more responsive but my brain has been a little overloaded lately. It's very important to keep together, because we'll really need each other years from now. The spreadsheets and shared docs sure do help.

Hey, what about that photo album, Joni?

Love to all, Mizsissy

Amera

Sorry I have not been around. My parents were here for my youngest's 5th birthday. She's having a friend party tomorrow so I've been busy with that. My oldest had a cello concert last night so between that and rehearsals, taking care of the dog, getting to rads, trying to make sense of the mess that was once my home...too much all at once.

I have tried to keep up with the posts but have not been able to respond.

My chest is now a big rash that itches. I did take a bath today with bubble bath not approved for rads and it didn't bother me a bit. I am also feeling slight fatigue. Nothing during the day but I am having a hard time waking up in the morning and have been oversleeping. Not good when I have two kids to take to school. I have two weeks to go.

And I was having a hot flash in the waiting room the other day and an older woman who was there said she was having them too since starting rads. So who knows what is causing them? I've heard it from pre and post-menopause, chemo and no chemo, taxol and no taxol. Seems that no one can escape them.

Okay, off to walk the dog. He is taking over my life these days. A good distraction I suppose. Hope everyone is feeling well and recovering quickly.

viddie

Hi,
Dear Shorti,,
Thanks for identifying with me. MY dd can be very communicative, and as you say, it has be when she is ready. I also have to learn when to let go. It will be a challenging summer, but it will be nice having her around, as long as we stay out of each other’s way when we need to. We usually go to our little cottage on a little pond from July- Sept. It is only one town away but seems farther. Meri asked if she could stay at our house. It is closer to both colleges, and that way we will not be in each other faces. She will also most probably stay with us on the weekends and whenever she wants. My dh wants her to mow the lawn in lieu of rent. We will set up some rules, like keeping the house in tip -top shape, locking doors and turning off lights. I know that sounds insulting, but when we let our son stay here alone a couple of summers, he often left the door unlocked and the lights on during the day. He paid us rent because he was working.
Have fun at your yard sale, and I hope you make lots of money.
Melia,
Thanks for your understanding. As I told Shorti, we are fortunate to have a summer cottage that we enjoy that is only a town away. Meri wants to stay at our house. I think this will be a good solution- and she will visit whenever she wants—for some meals, I bet, but that will be fine.
Actually it is a very good solution. I will not be watching her watching tv or whatever and worry about when she will study. As in college, out of sight out of mind. I know she has a goal and she knows that she has to ace these prerequisites in order to reach her goal. I rationally know she can do it. She did graduate cum laude. It just bothers me when she procrastinates, so it will be better if she stays at our house.
Thanks Tina,
Her boss told her that he will keep her on her insurance until June 30. She can then get insurance here as an individual. Another expense she knows she will incur. I guess this is all a learning process for her. Since the prerequisites all have labs, it would be very hard to find a full time job while taking these 2 courses. At least she can get a jump on them this summer, and then go back to DC and her bf and perhaps take another night course at a Virginia Junior College while she is working. It will not be easy because of the commute, but hopefully possible.
Rebecca,
I am sorry you were hurting during the radiation tattoo segment. I get the shutters thinking of your experience. Good luck today on your MRI,
I suggested she stay put and go to night school next fall, but she says she started working a week after college ended, and she is burned out. Her boss does not give vacation time, nor lets them take any time off, She doesn’t even get sick days. She never called in sick or has never taken any time off. She doesn’t get lunch time- she works 10 hours straight in a very busy demanding office.She told me yesterday that if she doesn’t leave & take some time off, she will have a nervous break down. That broke my heart. At 23, I guess I have to respect her decision. The pediatrician did tell Meri to give her a call when she returns in August and if she is still hasn’t found someone, she would be hired.
Mary,
He feels the same way as I do. He is even stronger that we do not give her any money for gas and that she mow the lawn in lieu of rent and that she takes very good care of our house. I have to say, he misses her as much as I do.
Caya,
Thanks for your words of wisdom. You are right, she does have a goal and is getting impatient that she had not had the time to take any courses yet. She e-mailed me last night that she is signing up for the other course an hour away. It will be 3 evenings from 6-10.00 and the school here will be mornings from 10-3. She will be very busy, but doable. Two days she will have to get on the highway after 3 to get to her 6:00 classes. They will be long days, but she is young. She will have off Tuesdays and Fridays. Not too bad. She did listen to me. I also agree that she also might me a little worried about me and want to be around me right now.It sounds like you will have a great time with your daughter this summer.
Skye,
That’s too bad that you are going to miss the wedding. My new fat is also going straight to my middle, and my shrinking tops just do not work anymore. Gotta get to the Mall.
I guess I am not the only one with kids entering out “empty nest.” Mayba Caya is right, maybe they want to be here for us and are worrying a bit about us.
Joni,
I am glad you are feeling better. Keeping busy is the best thing. Sounds like you are having lots of fun. Hiking sounded like a lot of fun. You are ambitious to tackle on a kids soccer team- good luck with that. It will certainly keep you young.

Sorry for this being so long- I am feeling a bit better about this situation- thanks to you all- thanks for all your support.
Viddie

mer1957

I attended the most wonderful, moving funeral for my BIL. I am pretty much a traditionalist and this was far from that. It began with a eulogy by the grief counselor for their cancer support group. Then friends got up and shared Ken's courage, strength, spirit, determination, his sharing beyond himself, always more concerned about how everyone else was doing, his positive attitude. It was truly moving. Then they played a song selected by him, played by him on his guitar and recorded for the funeral - how he believed his spirit would go on and there was life after - which was a relief for someone who did not have any formal religion. Then my husband got up to pray the religious part and do the readings which I helped pick out. He was amazing. The Spirit truly lead him to share who Ken was, what faith was about. I have never been so proud of him and so touched by something in my life. Ken's wife and son held up well. Tomorrow we are going to Ken-Fest, a party at his house in his honor. I just wanted to share how this story ended. Yes it is sad he is gone, but there is so much hope that his spirit lives on.

Let us all live our lives in that hope. Love you all,

mer1957

Mizsissy - I would like to get together for a bide ride before the effects of rads start hitting me.

mer1957

Joni - glad you are doing well. Keep up the good attitude and enjoy life.
Caya- Good advice for Viddie and Viddie- things seem to be working out.
Amera- glad to hear from you. Your life is certainly busy.
Rebecca, I'm thinking of you until you get your MRI results. I'll be with you doing the rads soon.
Skye-it's so hard being an artist and making a living!

TPPJ

Mary, funeral sounded very unique and like a great send off. I love the "Ken Fest". That is great! I'm sure it's what he would have wanted... anyone, really.

Joni, I like your "I am 100% alive today." We should all make that our mantra, esp. when we get down in the dumps.

IowaCindy

providing some good thoughts. Sounds like you and your DH have reached some decisions that you both can live with. And so can your daughter.

As the mother of two girls, 27 and 24, I can understand being in a quandary over how to help when there are problems. Wanting to help, needing to allow them 'growth opportunities', having to step aside for their independence. Yeow, that's so hard as a mum.

I'll be keeping your family in my thoughts this summer as y'all adjust to the new situations.

Cindy

Robbin65

MizSissy,

I didn't realize that you were that far along in the rads department. I am on my 9th day and nothing so far.

Did you ever get any extreme heartburn during your rads? I have had 2 issues so far with major heartburn where I thought I was gonna' die for like 4 hours...

I sure hope they ain't hitting my esophagus!!!!!!!

I hope you feel better!

Nancyab

Hi Ladies, Saw my Onc. today before treatment. She checked me for the pain I have been having and evidently my chest wall has some inflamation, I did notice my white count was up but not in the danger zone. So I am taking ibuprofin 600 mgs for the this. We also discussed me going into a study with the tamoxifin, arimdex and ovary removal. A lady called me this afternoon and said that I had to be pre-menpausal so in 3 weeks they will do a estra dial level test. If I pass that then I will get other info regarding this. Because my cancer is so high receptive on the estrogen, guess my chances of ovarian is high. I am seriously considering the removal of the ovaries. I just am ignorant on the SE's and long term effects. So I need to do some researching. Open for advice. Now I only have 2 more taxol treatments then rads.! Tomorrow is the Relay for Life, weather sunny and 72. I hope it will be fun, I have never done this before. I hope to at least raise 1000.00 myself when all said and done. This is for us ladies! The event has raised over 37,000.00 so far! Mary My sympathy and prayers in this sad time to your family.

NOLONGERREADINGORPOSTING

RobbinJaye,

Are they hitting the upper part of your chest with the rays when they zap you? I wonder if the heartburn could be caused by radiation. Which breast is getting zapped? Try taking Zantac every day. Do you have Mylanta on hand for those heartburn attacks. I'd be sure to tell the radonc about it.

I started having little heart flutters and shortness of breath about the second week of rads, and was told it had nothing to do with rads. However, it is obvious to me that the more radiayion fatigue I get, the worse the heart issues. I just read a post about a woman who has some heart problems as a result of radiation 5 yrs ago..

The fatigue is cumulative. It is important to sleep a lot, even if it turns your day around. Don't overdo exercise; you don't find out you've done too much until the next day and then it is too late!!! But short walks are great...

Hey, how much hair do you have?

It will be over soon!!!

xxxooo Mizsissy

Robbin65

MizSissy,

My left breast is getting zapped. I am large breasted and they had a hard time lining me up...

~

Oh, here are my two cats Ziggy and Angel. They are brother and sister and will be 11 years old on Memorial Day Weekend:


ZIGGY


ZIGGY


ANGEL

mer1957

Wow they are beautiful. Thanks for sharing. My son in Houston just adopted a stray cat, about 1 year old. Ozzy has a real flea problem which I guess is not uncommon in Houston since it is so hot and humid. He took him to the vet for a flea bath yesterday and sprayed is apt. Hopefully that takes care of it!

Re the heartburn, try taking any heartburn meds 1/2 hr before you eat in the morning -- they work better that way. Prevention before you actually feel the heartburn.

Are they radiating you up to the clavical?

mer1957

Have fun - glad you are doing this. Regarding the ovary removal, I don't have any info. but I'm going to check with my gyn when I go as lobular has a greater risk of going to the ovaries. My friend who did not have lobular had this happen and was able to overcome the ovarian cancer as well but said it was better to prevent it by taking the ovaries. What kind of breast cancer do you have = ductal? And what stage?

TPPJ

Nancy, how did they know your chest wall was inflamed? Did they do a chest x-ray?

I asked about doing ovarian removal too....when I began this whole ordeal. My onc. discussed test driving it with ovarian suppression shots like Lupron and one other one. I was up for this because I wanted to take Femara vs. Tamoxifen because I heard it's 27% better at preventing distant recurrences. Anyway, he sent me to a gyno. and she said do the BRCA test and if I was + ,ovarian removal was a "no brainer". I then decided to not BRCA test, or maybe I just lost steam... I was afraid if I was +, my daughter or I could be discriminated against for insurance. But...we probably will be anyway. I truly believe that nothing is secret...HIPPA laws or not. So maybe now that I'm feeling better, I'll revisit the BRCA testing stuff..maybe in the fall when the kids go back to school. I never heard back from the results of that P-TEN study I did. Need to call on that.

Anyway, after all that blabbering, I feel like I really didn't get any clear info. on the ovarian thing. I need to call my new friend, Diana (our daughters are in the same class & we are both 41)...she had her ovaries out about 3 mos. ago. My brain is so gone...I can't totally recall what prompted her to do it. Endometriosis, perhaps. I think another thing that scared me off was my gyno said she may not be able to do it laparscopically due to all my abdominal scarring. I just couldn't take another major abdominal surgery...not now.

NOLONGERREADINGORPOSTING

RJ, your kitties are beautiful. We have four and they keep us going.

How long is the hair on you head?!!

Back to the radiation problem. Eeverybody said it's so easy but the fatigue at the end is worse than chemo; of course, I didn't do as much chemo as most of you.

It's scary to be so wiped out. I am just hoping everything comes back...

Mizsissy

IowaCindy

Mary, it does sound like Ken had a wonderful send-off! I love the idea of a Ken-fest.

I hope the gathering sets the stage for a period of grieving that on the life and gift of Ken and not the loss.

Blessings to your family!

Cindy

Robbin65

Well, here I go. I'm getting pretty brave. I would only show these to you guys. I think I look like a different person, perhaps an old lady?

My last day of chemo was March 29th. So this is 51 days out of chemo. MY HAIR IS GROWING. So much grey...






BOOM CANCER AT 41!!!
-----------------------------------------------------------


JUST BEFORE SURGERY (Surgery was Dec 5th, 2006)


My Daughter at 13 (She's gonna' be 22 this year)


14 YEARS AGO


22 YEARS AGO

Amera

RobbinJaye, that looks exactly like my head. Same length (if slightly longer) and same color. I think we stopped chemo at the same time. I was hoping it would be longer by now.

I was checking out the other ladies at rads who had been through chemo. Most of them were 6 or so weeks out and had enough hair to go topless. It was very short but almost looked deliberate. I think, though, that they had done taxol and some hair had grown back during that. I am worried I will not have enough by the time I go back to work in Sept. I will gladly sport a super short do as long as it doesn't look like I'm in some sci-fi movie.

Robbin65

Amera,

I am also worried about going back to work in Sept. also. I do know that I cannot go out in public without a bra, so I have to see how my rads go. I do intend to enjoy the rest of the summer even though I am struggling every month with bills. Don't know how I am doing it. You'd think there would be more help out there. My only income is SDI and it's only $472.00 per month. aaaahhhhhh... Oh well, as long as my hair is long enough by Sept to go back to work.

Caya

Good evening ladies,
It was a gorgeous day here, DH and I went to the garden shop and bought flowers and came home and planted - well, HE planted, I basically sat and directed him where to put the flowers and yapped with a few of the neighbours who stopped by. I agree with you Mizsissy, it seems like this fatigue is just never ending - I am so wiped out after this final chemo. And the night sweats are worse too - particularly my head gets very sweaty...
MAry - the funeral for Ken sounds very inspiring and the Ken-fest also sounds great. I hope everyone is holding up okay during this very trying time, especially your SIL and nephew...
Viddie it sounds like everything is working out with your DD - I am a worrier and hoverer like you, but I am trying to not be so wound up about things - it's hard though.
Nancy and Tina - I also am investigating yanking out the ovaries - I went to a gyn. onc. about 6 weeks ago and she also said we should wait until my BRCA testing comes back... my breast onc. doesn't want me to take them out right now but if you think I can remember why he told me that... good luck, it's chemo brain. I am going to ask him when I see him in 3 weeks when I have my first Herceptin infusion.
RobbinJaye - thanks for posting your post chemo 'do. My onc. told me I would be "blonde" - i.e. grey - but then I'm a few years older than you - (49 in September).
Skye - I hope you are feeling better. I know what you mean - "What was I thinking" I always have the day planned out with all kinds of activities, but I am pooped out by mid afternoon, and can't do much after that. I am hoping that my strength will return soon - My pants are getting tight too but I just don't have much energy to exercise.
Rebecca, hope your MRI is a-okay.
Joni, glad you posted, sounds like you are keeping busy, which is great. Hope you are enjoying Victoria Day weekend.
Shorti - I hope you are also feeling okay and not having any more dizzy spells.
I am probably forgetting to respond to a few of your posts, forgive me, like Mizsissy I am tired.
hugs to all
caya

TPPJ

Robbin,

My hair is very similar to yours too, except for that I threw some color in it already...it ties in w/the wig color. You don't look old because you have good, young skin. You are lucky. I'm still on the fence on what color to go permanently.... I've highlighted blond for years and the grey roots may show less with that, but I look more awake w/it a litle darker. Dilemma, dilemma. On another note, a few more brow hairs grew back in and they are coming in dark...not grey. Thank God. I don't even want to say what's going on "downstairs". Ha-ha! Let's just say my husband may be thinking he's hookin' up with Grandma.

TPPJ

QUOTE: well, HE planted, I basically sat and directed him where to put the flowers and yapped

That's my kinda gardening, Caya!

Laughed at your comment on you can't remember the answer to your ? about ovarian removal. That is soooo how I am on that topic. It's like they aren't sure what to tell you, so their answers aren't all that definite...and you don't retain it as a result.

Saw a blurb on 10:00 news that 77% of women w/BC are over 50. Wow. I was going to go to the Race for the Cure today just to check it all out, but emotionally, I wasn't ready for it this year... knew it'd produce too much of a boo hoo fest. I try to avoid that as best I can.

mer1957

Ken Fest went very well. Even the weather cooperated. We had about 60 people show up. The food was great and everyone was in an upbeat mood. The kids had a great time and no one wanted to leave. I am sure the next few days will be hard with the commotion over with and it being quiet. I know I need to reach out to my sister-in-law and keep in touch or we will lose touch.

RobbinJaye--I think it is harder for you regarding the hair since yours was so long bc. I always wore mine short. It's been 5 weeks since chemo and you can see my roots turning dark but no length yet. I went to Ken Fest without my wig - just my hat. As soon as I have any hair length at all, I'm going back to work without the wig.

Is it hard to wear a bra with rads?

Rebecca, I need the link to the spreadsheet again. Good night.

I hope I can sleep but I've had a lot of caffeine today!

NOLONGERREADINGORPOSTING

RobbinJaye..WOW, you are brave!!! I almost thought of doing the same thing. I can do 32 years agos, 15 years ago, 5 years ago, right before chemo...but wait---I cannot, cannot let anybody see my bare head now. Won't even let hubby look at it (except I can't help it when my hat falls off in bed).

He says my hair looks like yours right now, except a bit whiter. From your history, it is quite obvious that you are very good at producing hair, LOTS OF IT, so you'll probably have it again very soon.

Whew...I don't know how you are making it on 472..that's admirable!!! That is really rough; there should be more help out there. You'll be able to work by September easily, before then. The skin on my breast is healing fast; I wear a bra now to hold a tissue with Desitin in it; that's more comfortable than braless. The fatigue is better. Woke up at the crack of 8 AM this morning, earliest this week! Planted pansies and herbs yesterday too!!

Caya, Nancy, Tina I think it's a *good idea* to yank the ovaries. Finally got the *lowdown* on the antihormonals. Mena has had every medication there is, and she says Femara is hands down way better than Tamoxifen. She said the SEs on tamo were far worse than on Femara. Also, I can still take Prozac. So in a little over a week I'll start Femara and watch out HOT FLASHES, I'll be heating up this corner of Michigan!!!....I hope they don't get really worse.

This BC thing is insult after insult!!!

Just found out my health provider won't pay for the bone scan I had last week; the only conditions under which they pay are 3 months of steriods, 12 months of bed confinement, or renal failure; they don't allow them at all for the natural effects of aging. Crazy!!! Fortunately, we have medical reimbursable for expenses not covered by our health provider.

Mary, we should get you over here soon. Doing anything next weekend?

xxxooo Mizsissy

seasun

Robbin - I had my last chemo Feb 19/07 and my hair looks just the same as yours in length and colour. I used to be blond and short haired but now it is dark and grey. In a few weeks I plan to put a toner on hair. Hate it this colour. Hair was growing and then it just sort of stopped growing. Same as nails - they grew like crazy under chemo and have stopped now. Also after radiation (last one 2 weeks back)- the burns were bad but skin is healing (I had 5 "lines"). Radiation is "duck soup" (meaning easy) compared to my 6 treatments of FEC and Taxotere of chemo over an 18 week period.

TPPJ

Yes, MizSissy, I think if you can take Femara over Tamoxifen, go for it. And if the s/e's are less than Tamoxifen, you are golden...because I've had zero on Tamoxifen. Not a single hot flash either. I find that so odd.

Very annoying that you find out they won't pay for the bone scan until AFTER it's done. What's up with that??!!! I read an article a few months back about self employed types who have private insurance...as opposed to large group insurance through a major corporation, etc. Anyway, these insurance companies are taking these peoples money month after month and then denying them coverage...