anyone starting chemo in Nov 2005

kim825

Kaye, was waiting for your update. Sending you lots of hugs and some extra prayers coming your way. I pray that you are one of the people it works for. I wanted to ask you if you called the American Cancer Society. They have a program "Reach for Recovery". They set you up with a buddy that lives in your area that has gone through something similar to your situation. I have done this and met a wonderful woman who is there for me 24/7. When I am having a down day besides coming here I call her. I also started going to a support group. Did you speak to the doctor about the depression? There is something he can give you for that.
I hope you have a better day today.

hugs...
Kim

Odalys

Kaye - Sorry to hear you're having to go through all this. Hang in there. I think depression is expected, you're dealing with a lot and don't feel very good at the moment. All this must be overwelming for you. Please keep fighting and don't opt out. Count on us for support and to get you through the emotions. Cancer and Depression don't stand a chance against all of us! Vent, cry, get angry, feel what you need to feel but keep fighting. Let us know how we can help you get through this. Sending hugs, loving energy, and prayers your way.

lana17775

Kaye -
I'm so sorry you're having to go through is being as isolated as you are -- I think Kim's suggestion about Reach for Recovery is a terrific idea! Certainly worth a call - you never know - this disease effects so many people you may have a wonderful person close by that you don't even know about!
You are in my prayers all the time -- I bet you can feel the support you get through these boards if you really try!
It sounds like the whole brain radiation is certainly worth a try! And the depression meds are a good idea as well.
Love and hugs Kaye!
Chin up!
Lana

LauraCA

(((Kaye)))

I am so sorry you have to endure radiation. Please know I am thinking of you and praying for you each day. I hope you are feeling better soon.

Laura

Anonymous

Kaye-I was glad to hear from you. We are all surrounding you with lots of love and faith. I know this is scary, and you want to feel good again. We want you to feel good again, too.

I had AC#4 yesterday, and I feel icky icky icky today.
Liz-I'm not sure what carboplatins are...I just know that it will be given with the taxol. I will go every week for 3 weeks, then get one week off. This goes on for 12 weeks. I was all excited that I only had 8 weeks left of this crap.
Oh well. We all have struggles going on, don't we? I feel a little stronger each time I come here. You ladies ARE my support group. I really think we should plan a reunion down the road. My son has hemi-plegia, and I belong to the hemi-kids board. They all plan a retreat each year so everyone can meet the people they've been "talking" to each day.
Lots of love to all, Debbie

Anonymous

PS-I forgot to add that I had my first breakdown last night in a LONG time. I (forgive me) burped up the fruit sorbet I had during Cytoxin to avoid mouth sores, and even as I type about it, I want to puke. Anyway, I burped, and had to really fight myself from throwing up. I was trying to wrap my son's gifts at the time, and I wasn't feeling great to begin with, and I just burst into tears. My poor hubby didn't know what to do. He finally came over to the couch, and laid my head in his lap and stroked my cheek while I cried for an eternity. I got so fed up with not feeling good. I also got mad that chemo was getting in the way of my wrapping gifts for my baby!!!! I hate this sometimes.
Debbie

Odalys

Kaye - The Reach to Recovery Program is an excellent resource. One of their volunteers reached out to me after my surgery and it made all the difference in the world.

Debbie - I can relate to your breakdown, had one last Wednesday morning and thought I would never stop crying. Hubby was also very supportive. It must be hard for them to see us in such despair. Having a reunion is a great idea, perhaps we can plan one for our first year. Sorry to hear your son has hemiplegia. Is it from birth? Wow...you sure are dealing with a full plate. I think you're entitled to a breakdown every now and then. How about your hubby...does he have someone he can go to for support? My husband has a couple of guys he has known for a long time.

Anna - hope you're enjoying your daughter's company.

Wishing everyone a good Christmas.

Anonymous

Odalys, my hubby's best friend lives in Springfield, Missouri, and is the pastor of a church. He is the ONLY pastor, so he is horribly busy. Greg doesn't like to call him for fear of "bothering" him. I worry about him a lot. Also, yes, Daniel's hemiplegia was from his being born 9 weeks early. Daniel has far surpassed the prognosis given to him. He had the worst type of bleed on his brain, and could have had severe handicaps. He struggles with his left hand, and left foot, but USES them both. He is in therapy every week.
Lots of hugs and prayers to all....Debbie

spirit3kd

I am so glad that I am not the only one breaking down and crying. Not that I want that for any of you....but I thought I was the only one.

Debbie~ I know exactly how you feel.....I just cry sometimes and can't quit. I have my ups and downs.

I will check out the "Reach to Recovery" program and see if there is someone else that maybe has gone through this in my area.

I get so sad when I think that I started chemo, lost all my hair, and now have to get pulled from that, and start this RAD's on the brain. I am really scared of the brain swelling. They did give me some medication for that, so hope it works. They said I would probably sleep 12-14 hours a day. Have to have treatment everyday for six weeks. Will start next Tuesday.

I went today and they made up a mask to cover my face. I felt like I was Hannibal Lector in "Silence of the Lambs. They tied my feet together and my hands and put this hot woven cloth on my face, then in a few minutes it began to cool and harden. I could breath through it, but felt claustrophobic. They then taped copper beads on it where they will shoot the beams of radiation. Then they put me in a simulator to show me what it would be like.

Take care everyone, hope you have Happy Holidays.....Love Kaye

Odalys

Debbie - sounds like Daniel is a fighter...like mom! God bless him. Great he is going to therapy. I have seen kids not only beat all odds but develop skills beyond everyone's expectations. He is very lucky to have loving parents. Hope Greg finds it in him to call his friend. Pastor will probably understand and not feel bothered. Take care. Hugs.....

Odalys

Kaye - how frightning what you went through today! I am very claustophobic so there is no way I would have been able to go throught it without drugs. I'm inspired by your courage! Hope the drugs help you sleep and reduce the swelling. You're in our prayers.
Love and hugs!!!

sierrasusieq

Kaye, I am mostly on the new Dec. thread but I have been reading some of you guys who are farther into it all than those of us just starting this journey.

I just want to say I feal so bad for you . I , too would be very frightened with what all you have been going thru.
I am going to be adding you into my prayers Kaye.

Hang in there sister.

Nancy-SanDiego

Hello ladies. Hope you are all doing well. Enjoying family and all the trappings of the season. My sis just got here from Philadephis and went from 20's to 80's--she's flashing more than I am right now. Lat, so sorry about shingles--those really hurt. Debbie, Odalys, hope you feeling better. One of my support group told me that treating yourself to bed (and a sleeping pill) during the days and nights you feel crappy is OK to do.

Finished A/C #3 this morning. So far, so good. My RBC's are down and they started me on injections for the duration. Can't recall the name--anyone else taking these? If so, any side effects?

Talked to my onc about the SA Conference. She said the Finn study reducing Herceptin from 52 weeks to 9 weeks is "interesting" but the study was to small to take seriously at this point. She's hopeful that it will ultimately prove to be viable since it can reduce cardiotoxicity, save a tremendous amount of money, and get us through treatment sooner. However, she did say that studies of women getting Taxol weekly with Herceptive for 12 weeks (instead of T every 3 weeks and H every week) shows a slight decrease in reoccurence with no greater toxicity.) Herceptin would then continue for 40 additional weeks. She wants me to think about a weekly regime since I will be there weekly for Herceptin anyway.

Missed the on-line conference and am eager to read the transcript. Went to see Neil Diamond on Wednesday (lots of the oldies but nothing from his new/best album) and then saw Lion King last night with by little guy (spectacular). In the event I miss Christmas this year, already had a wonderful time.

About the port--it is a challenge. I used the prescription lydocaine an hour before my blood draw. I definitely felt that ice-pick going in and then it wouldn't work. So we started over, only this time she numbed it a bit first. Last month and yesterday, she left me hooked up over night so they didn't stick me again for treatment. Today, my onc nurse asked that we not do that anymore while I am on A--she said it is just too risky. Sounded too easy.

Still shaving much of my head. Grandson asked if he would come back a different color--he favors pink. Might be great from spring.

Please stay warm and well. You're all in my thoughts.

Nancy

Nancy-SanDiego

Kaye, I had not moved up far enough to realize that you were going through so much. I am so very sorry you are having to go through this--additional pain, indignities, uncertainties--the whole mess. We are with you every step of the way with love and prayers. The local support groups, buddy programs, and even some other threads here can be so helpful--connecting with women who have gone through it can give you first-hand info on what to expect. Keeping reaching out to all of us and take it one step at a time.

Nancy

LizM

Kaye, so glad you decided to proceed with the radiation. My thoughts and prayers are always with you.

I will be going for AC#3 on Tuesday since Mon is a holiday. At least I'll have one more day of feeling good before it starts all over again.

Merry Christmas to all of you wonderful ladies.

AnnaM

Kaye: I am praying for you and hold you in my heart. I agree that the Reach of Recovery program is wonderful. I too had someone in the area who called me regularly until I was okay on my own. She volunteered to come and see me, but I didn't need it at the time. It is good to know there is someone who has been through the same thing and who knows what it feels like. You deserve someone to hold your hand. We are all sending you love and positive vibes, but I wish we could hold you in our arms.

Liz: Good luck for #3. Mine went much like #1 and #2.

Nancy: I will be getting the Herceptin/Taxol weekly for 12 weeks, then Herceptin alone for 40 weeks or so. When do you finish with the A/C and move on to the H/T? My last A/C is on Jan 3, and then I get the first H/T on Jan 23.

Odalys: I am absolutely loving my daughter's visit. She'll be here through the 26th, then she goes up to be with her hubby in Boston and comes back on January 7th to stay till she returns to France on the 11th. It's nice knowing she'll be back in January so I don't have to fall apart when she leaves next Tues. She absolutely loves my bald head. She and my husband keep rubbing it and telling me how beautiful I am. Sometimes my husband calls me Mrs. Kojak. I still think I look like a little old man, but I like hearing them say those things.

Debbie: I had no idea you had been through so much! I am glad to hear that beautiful little boy of yours is doing well with such a scary situation. Will he get therapy for as long as he needs it? How old is he now?

I too have a thing about the popsicles I take to my chemo treatments. When I see them in the freezer I almost start to heave. I know they are doing their job, though, because all the people I talk to who got terrible mouth sores from chemo did not do the popsicle thing. I'll take them with me for #4, but do we need them for Taxol too? I can't get my oncology nurse to comment on them; he thinks they are totally arbitrary.

I agree that husbands or other caretakers need to have an outlet of some sort: a best friend, a pastor, a group of friends. I know that our local hospital has a support group for caretakers and that some men make friends there. My husband is not the support group type, but he has a sister he is very very close to, and I know she listens to him whenever he needs her. I do go to a women's support group, a spiritual support group and any art therapy, Reiki, writing, drawing or music workshops the local cancer center offers. I try to work as much as I can on making this mean something. I want to grow. I want to be strong. I want to come out of this better in some way. I am praying more. I used to be a French teacher, and I made my students learn some absolutely beautiful poetry. The only way I could get through those first nights in the hospital after the surgery was by praying and reciting those poems I had taught my students. I still use them to get through sleepless nights. I have to make something positive out of all this or else I will crumble under the awfulness of breast cancer and of all cancers. I feel as if my eyes have been opened to things I didn't want to know about and there is no going back.

My husband is a Moslem and he is in the process of reading the Koran (something he does every few years). He is actually writing a book about why Islam is not the source of what is going wrong in the Middle East, it has been perverted by rulers who want power and money and by rebels who want power, too. Anyway, the Koran says that when something bad happens in your life you should not wonder why you have been given such bad luck. You should realize instead that God (Allah) knows you and that He knows your strength and there is a purpose in everything He sends to you. Does that sound familiar?

I am going to be thinking of all my sisters on this board these next days. I am so thankful I found you. You mean so very much to me. I pray for you all and I wish you a very peaceful Christmas and Hanukah, a restorative Winter Solstice, a meaningful pause in your days of treatment.

God bless us all,

Anna

AnnaM

Hey, wait a minute! I just noticed our board got five stars! Is that a sign of something mighty nice or what? I have no idea how that came about or even what it means, but I am going to take it to mean everything good we want it to mean.

Anna

LauraCA

I just want to say that I feel fortunate to have found this group of ladies. You are all so warm, articulate and caring. Thank you all for opening your hearts and sharing your experiences. We all benefit in many ways! It would be great to have a get together someday.

Nancy, that was a very interesting post about self-help strategies and the teachings of the Koran. We can all benefit from our preferred spiritual support at a time like this and the positive thinking it offers!

Kaye, I cannot imagine having my hands and feet tied while something is applied to my face like that. I would have absolutely freaked out. They would have had to sedate me! I had a hard enough time with the PET scan and having to put my arms over my head. I made them untie my feet, promising to hold very still! How stupid I felt. You are very brave!

Debbie, I can relate to the emotional breakdowns. I tend to hold mine in or cry in private because my husband cannot handle my emotional releases, he barely copes with his own emotional health (Bipolar). Sometimes I get cranky and have to explain that I am just sick of everything and would like to be left alone sometimes instead of people saying "What's for dinner" like everything is normal! It is not normal, I feel like crap and I don't want to cook!!!!

Laura

LauraCA

Debbie - I meant to say that you certainly do have a full plate with your son's condition. I'm glad he is able to benefit from regular therapy. I cannot imagine having a baby at a time like this!

It is amazing what we are all dealing with in addition to BC.

Laura

Anonymous

Anna-BLUSH!!!! I rated our board. I felt it was time....look at all the wonderful things we've shared with each other!!!!

Laura and everyone else who've shared thoughts on my baby-he and I thank you for your kind words. Yes, he will be in physical/occupational/developmental/speech therapy for years. It is ok, though, because the therapy he has received so far has worked wonders. It was tough when he was born because it was possible that neither he or I would have made it through the birthing process. I had HELLP Syndrome, and severe toxemia. That is why I am convinced that God has a purpose for me. He wouldn't have spared our lives just to take it away from me less than two years later.

I have another thought. Anyone interested in writing a book with me? I was trying to keep a journal and (blush again) have not updated it since Halloween. However, I think it would be SO beneficial for people to read about the stuff we go through on a day to day basis...popsicals making you want to barf, people not understanding that we DON'T feel good, we don't care what is for dinner, the scary treatments we have to endure.....all of it. I really feel that is one of the things God wants me to do for Him. Help other women beginning this journey. Let them know that what they are feeling is OK.

sierrasusieq

Hi Debbie, I am on the new Dec. thread but I like to read the Nov. one to see what to expect. I am so sorry that you are going thru so much with your little boy and your cancer on top of that. I am sure that God does have a plan for you. You sound like a great lady and this must all be for something allthoug it is hard to know sometimes what .

are you a writer?? A book is a great idea and I would love to participate. This is the second round of BC for me and I have also lost 2 aunts at young ages to it . My mother has also had BC 23 years ago and 2 years ago has had mets to the lungs . She is doing pretty good now with the mets in remission. So, I have been exposed to BC all my life basically with watching my aunts die and me getting it and my mom.

Happy Holidays.

Nancy-SanDiego

Its a time of blessings and sometimes it is hard to get past the discomfort, pain, memories, worries to get to the blessings, isn't it? I'm 1 day past A/C#3 and not feeling too badly, but not great. I am looking forward to a little time with my son's family tomorrow but am also keeping an eye on that far away point when all this treatment is behind me (1 more A/C, 12 weeks of T/Herceptin, 40 more Herceptin, 35 rads, and then forever on Arimidex.) Spring should look pretty good and summer even better. By fall, I'll have hair again, a spring in my step, and wounds that are totally healed. Now that's a blessing. I also have all of you and the support and information and love that is shared so freely on this board. Kaye, Debbie, everyone who is in pain out there, we are with you. I love the idea of getting together somewhere, sometime. It also sounds like we have some stories to share. Thank you all so much -- you are a huge blessing for me this year.

Happy Holidays,

Nancy

mrsz0619

Good Morning to all the wonderful November 05 Ladies. Merry Christmas. It is a beautiful morning here in Massachusetts, and I am getting ready for church, I have to go pick up my mom and my aunt. We had a Christmas eve candlelight service last night at 7pm, that was wonderful. It is so nice to hear the beautiful story of our Savior Jesus. My whole family went, it was lovely. I have a lot of posts to catch up on (19),later this afternoon. For now I hope everyone is feeling good, and looking forward to enjoying their day. LynnZ

LAT56

Merry Christmas to all on the Nov. board. Lots of posts to catch up on!! I was having a bad case of the blues and retreated into self-pity. It is taking some time to recover from treatment #2 of ACF (done the the 19th). I just feel like crap. I can't taste food & liquid intake has become a problem. Luckily, I read previous posts regarding those issues and will take in all of your suggestions. Thanks everyone for sharing!

This has been a very emotional holiday! It's been a tough year and I must say that I am looking forward to ringing in a NEW YEAR!!

Happy Holidays to all!
LAT56

Odalys

Merry Christmas ladies. Hope everyone is feeling good enough today to share this holiday with loved ones. If you're not feeling up to it today, hang in there. Hope tomorrow is a better day. Every year we celebrate Christmas Eve (Noche Buena) at my house, not this year. I missed that but still felt incredibly lucky to be alive and have enough energy to play tennis (novice) with hubby and our little guy. Somehow, this Christmas we have all become closer. Interesting...the BC diagnosis and Mom's illness have also brought my sister and I closer together. God works in strange ways...Hugh?

LAT56 - Sorry to hear you had a "bad case of the blues". It’s OK! Hope you're feeling better. Glad to see you back on the board missed reading your posts. Hang in there and keep coming back.

Hugs...

mef_rn98

Just wanted to say Merry Christmas to all of you wonderful ladies, and to let you know what a wonderful gift you all are! You are all such a wonderful source of information, support and inspiration, and I am so blessed to have you all by my side as we make this journey. My Christmas wish is for health and happiness for us all in the coming year.
Love to everyone!
Mary Beth

Anonymous

Hi Everyone, just checking in to say Merry Christmas, and a VERY blessed New Year!!! We had a full and tiring day today, but it was a wonderful time. My hubby bought me a beautiful white gold cross pendant to replace one I lost.

I hate the taste of water, and am struggling to get my intake today.
Sierrasusieq-I'm not a writer, but have always wanted to be. I just feel led to write a book to make the journey easier for women after us. I imagine it as a narrative from lots of different women, documenting their experience. I really want to do this. What do you think?
God's blessings to all, Debbie

kim825

Stopping by to wish all my Nov. buddies a very Merry Christmas. Hope you are all feeling good today. We had a wonderful day yesterday and today. Very tired, but I rested when I needed to. It was pretty emotional day also. I had my cry w/dh this morning and then had another one with my mom and that was it. Dh had an emotional day also, he said just seeing me so happy w/ my family made him upset. But all in all we had a great day.

Kim

AnnaM

Debbie: no blushes necessary. Thank you for giving us stars. We deserve them! Whenever I am at the grocery store or somewhere like that and see a woman who is obviously wearing a wig, I feel like walking up to her and putting my arms around her. I think she deserves stars. I hold back because my husband says maybe some women wear wigs for other reasons. Whenever I am in a parking lot and see a car with a pink ribbon I wish I could stay around and catch the person who goes with the car so I could hug them. Silly, huh? And there are all those (like me) who don't wear ribbons or port signs. I feel humbled at the sheer notion of how many cancer survivors there are out there. All those other cancers, too! And all their caretakers and family members. I guess it makes me want to be nice to everyone I meet, just in case....

Here I am in week 3. So many blessings: I feel good, strong, my daughter is here for another day, she and my husband are being wonderful, the sun is shining here in Virginia (sort of anyway), I can eat pretty well, I can drink my water, I'm comfortable in my fleece cap, the stubbles no longer hurt when rubbed the wrong way. I have a whole week before chemo #4, my reconstructed breasts are beginning to feel softer, my scars are getting smooth, I still have a few eyelashes and two or three eyebrow hairs, the list goes on. But most of all, I live in an age where I get top-of-the-line treatment for this cancer and where I can communicate with powerful, caring and very very dear women who understand me. My oncologist told me that when she started her practice women got the kind of chemo we get for a full year, and that they didn't have the strong anti-nausea meds we get now.

I love looking at the Christmas tree. I keep it lit all day long.

Happy Hanukah for those of you who celebrate.

Anna

Nancy-SanDiego

Anna, bless you for sharing all those thoughts. I, too, am humbled by all the women of our community and appreciate their strength and courage, especially when I am feeling vulnerable and blue. Most days I am feeling pretty good and want to hold anyone close who is in pain or struggling with the uncertainties of our dx or just miserable with side effects. You are a gift.

Nancy