Starting Chemo April 2009

BetsyBuzz

Hi all,

Sorry I haven't posted lately. Work has gone from busy to CRAZY. Plus it's my year to host Thanksgiving. I'm not use to hosting as I always went to Seattle to visit my folks. But my sister is getting a divorce and my brother & his dw didn't have anywhere to go so they are being added to my dh's family. I think the count is up to 15 at the most, I'm hoping 3 will not show (they are iffy). It was only about 5 years ago that I even started eating poultry. I still don't eat red meat. So cooking a turkey is a new thing. The good thing is everyone is a good sport and pitches in. So I guess I shouldn't worry.

I stayed on tamoxifen as I already experienced the worst SE (endometrial cancer). I choose the evil that I know instead of Al's. Al's have a slightly higher risk for blot clots, so that made of my mind. The onc quit even asking me to switch. I guess that is a good thing.

I went to my GI dr and will be schedule for a colonoscopy soon, next month or two. He swears I have Lynch syndrome and is treating me for it, even though my genetic tests were neg. He says they only tested five sequences and there are many more. I told him I did not have it and would give him two years between exams, if after that time I have a clear test, then I will most likely move to three years. He said do you argue with your Priest or Rabbi like this? I laughed and said "of course!" and smiled. Hey it's my body. He was mad at me for not having a colonoscopy in the past four years. I said, it was not like I was sitting around twittling my thumbs, I had a few other serious issues to deal with. He gave me that one.

I'm glad it's been quiet on this board, that means everyone is feeling pretty good and doing ok.

I'm thinking of my dad today. He was a Veteran of WW2 and a prisoner of war in Germany. I miss him and feel thankful to him and all the other Vets that have made America safer.

Betsy

Titan

Hey Betsy!  good to hear from you!  Your Ducks are doing awesome...keep it up!  gotta keep the SEC out of the national championship (hope I didn't offend anyone here)..I haven't had a colonoscopy either but thinking about it...I just hate the idea of any medical procedure right now...just not in the mood for bad news....I know I'm pushing it here but I can't help it...

That's cool about your dad...veterans day was really ramped up this year and I'm glad to see it...guess after all the political stuff we have been through everyone was anxious to honor our really heros..tired of the politics posturing and bull *** we have had to endure for so long.

Hope everyone is doing well...my son is coming home next Wednesday after 3 1/2 months at school...I'm soo freaking excited...he tells me to calm down but I just can't...

JudyNaomi

Betsy, so good to hear from you. Thanksgiving was my favorite Holiday when I was in the US. I am sure that your gathering will be great and lots of fun. I was always in awe of Veterans Day when I was there too. Honoring those who flight and sometimes die for their country is so very important and such a crucial part of educating our kids. So much is taken for granted today and we need to be reminded of how things came to be what they are.

When I saw the Oncologist yesterday she started hinting about an annual colonoscopy and I said "I don't think so". I didn't want to do it in the first place and I know that it is a risk, but sometimes we have to say "enough". Otherwise our lives are taken over with appointments, tests and procedures. Anyway, she will no doubt let me know what she thinks at our next appointment. She has given me some routine stuff to do, and I will get around to that in the next few weeks and months.

Titan, enjoy your son's homecoming! I am sure you are excited! My eldest is in 11th grade and I am already wondering what it is going to be like when she leaves home.

I am making a flying visit to the UK today; unfortunately, my grandmother passed away and I am going to spend a day or so with my Mum. She was in her 90s and had been sick for a few years, but it is still a huge loss for the family. She was quite a legend amongst family and friends and the response to her passing has been overwhelming.

I will come by when I get back. Hope everyone is doing ok. Hugs to you all, Judy x

inthemoment

Judy - So sorry to hear about your grandmother...good that you can be with your mother. Although it is a blessing to have the ones we love for so many years, it is still such a loss when they leave us. I'm sure your presence will give your mother great comfort.



Geri

JudyNaomi

Thanks Geri, I arrived back last night. I was pleased that I went, it was good to spend time sitting together, talking and wading through boxes of old photographs. I am very fortunate to have had a grandmother all this time and that she could enjoy 11 great grandchildren too.

Hope everyone is doing ok and has a good weekend.

Sending love and hugs to you all, Judy x

Alaina

Hi Ladies!

I feel like it's been forever!  I've missed you!

I'm doing well and am ready to start dating again *ugh*

I finally decided I'm done with surgeries and revisions...my twins will have to remain fraternal although I really was trying to get them as identical as possible!  LOL!!!

I've started exercising, although not as consistently as I should, but I'm still doing something every now and then.  Life and work keep me really busy.

I haven't been on here since we lost Dana.  I spent the majority of the summer silently grieving and while it still hurts like hell (I still try to call her just to talk), I know she would want me to embrace the fearlessness we so often talked about and get out there and reclaim all the GOOD parts of life that cancer tried to take away.

How are you all doing?

Alaina

hrf

Hi Alaina and welcome back. You have been missed. Glad to hear that you are moving on with life. It's not easy, is it? I laughed when I read your description of "fraternal". I was at an information session recently and the docs all said they are "sisters not twins" ... guess you are saying the same thing. Sorry about Dana. Losing someone important is so difficult. Let us know how the dating goes. Please stay in touch.

inthemoment

Hi Alaina. Nice to hear from you and to know that you are venturing into the dating world. My 11 year relationship recently ended and I also am willing to give love another try. I have been on a few " coffee dates" and one day in the country, but have had no reason yet to discuss the " sisters". I will cross that bridge if things progress to that point. So, good luck to you!



Judy, I am saying many prayers for you, your family and friends, that you are safe with all the new fighting in the area. It was very scary watching the news tonight, with the missiles coming in to Isreal. I hope you are not near the danger, although I doubt there is any place in your country right now that is truly safe. I will continue to pray for your safety, and please stay in touch so we know how you are.

hrf

Judy, your family has been through a lot recently. It must be difficult. How fortunate you are to have had a grandmother. I never had (or never knew) my grandparents as they all were killed during the Holocaust. Becoming a grandmother myself has been an amazing experience as I never understood the relationship before this. 

I'm so worried about you and all my relatives in Israel right now. The news is quite alarming. Please let us know you are safe.

inthemoment

Helen, prayers for your family in Isreal as well (and anyone else here who has loved ones in that part of the world)

JudyNaomi

Hi Ladies, thanks for your caring as always. We are ok at the moment. Israel is a small country so you are never really far away. Nothing has hit our city yet, but we are never quite sure what is coming next. In the meantime, we are at work and school and carrying on as normal (whatever that is..). The kids are a little nervous, and we are trying to reassure them as much as we can.

Helen, I think that grandparents are like gold dust to their grandchildren; enjoy every minute you have with them.

Alaina, so good to hear from you! Your photo is gorgeous! I was so happy to read that you are busy and ready to get out there again. Please keep us posted on that and all your other news.

Geri, how are you doing? Thank you for your prayers.

Betsy, Titan, Lesley and Amy, I hope you are all doing ok.

I will come by again soon, hugs to you all, Judy x 

Alaina

Good Morning Ladies!

Thanks for the warm welcome home :-)

Moving on is NOT easy, but oh so necessary. 

Judy, please stay safe, and I'm praying daily for peace. 

Anonymous

Hi, ladies - checking with you on this Thanksgiving week (for my U.S. sisters) and not to miss anyone, hugs all around.  Judy, I pray every day that you and your family are okay and safe (as can be) and Helen, I will pray for your family as well.  It truly is frightening what is happening and I hope there can be some resolution soon.

Alaina, nice to see you again too!  I had my 6 mo. onc follow up last week and everything is A-Ok.  Bloodwork was perfect and they are impressed at my energy levels (I guess we're not supposed to be like energizer bunnies and keep going and going, but I am).  I'm on the 6 month follow up schedule and as I come up on my 4 yr dx anniversary in February, and move into the 5th year, I am not sure how they begin to space out the visits afterward - maybe 1x a year or it probably depends on how long they keep you on tamox.  All I know is that I am finally starting to feel "normal", whatever that was, meaning, for the first time in 4 years, I am feeling more like I did pre-BC.  My hair is as long as it was in November 2008, that I feel good (for the moment) and am trying to keep moving forward. 

I am too saddened by the passing of three women who I had "chatted" with and were bc sisters and friends - I am not sure if one of them was on BCO, but we lost Sue Barnes Augustine, and Reneepals, and Lynn Brinks Connell.  It is still startling at the number of sisters who are suffering and struggling so, and saddens and frightens me.

I am getting ready for the holiday - we're having about 8 people over and I'm cooking a 21lb turkey (I have the three wise-men bottomless pits: my 19 yr old nephew, my husband and my firefighter brother) because I like to actually have leftovers!  Pie baking will start tomorrow and I do enjoy cooking the huge meal - its my favorite meal of the year, and I don't have to do any cleanup, which is a bonus.  Also getting ready for my 50th birthday - it's coming up next month on the 24th and as I am the chief party planner/organizer in the family, it is a challenge for my daughter & sisters to plan a "surprise" party for me on the 15th.  Only reason I know about it?  My sister called and asked me to pick her up at the airport and she is staying with me.  I think the guests are going to be more surprised than me, because I had to give my daughter the list of people to invite and how to reach them.  My daughter told me, "I don't know how you do this so easily, this is so hard!"  It will be a fun party and I will relax and enjoy it - which will be hard to do, but I know I can!  Give me a glass of vino and I'll be set.

Wishing each of you a wonderful week - stay safe, warm and well fed!!  Hugs to you all.

JudyNaomi

Thank you again for your love and prayers. We are doing ok here where we are, for the moment.

Chelev, so nice to hear from you! First of all, Happy 50th Birthday!!! I am sure your party will be great! So good to hear that you are feeling good and that your check up went well. Hope your Thanksgiving is fun, I do miss the Holidays in the US.

Sending you all hugs for a great day, Judy x

AmyIsStrong

Happy 50th Chelev. Glad to see you checking in here again. Your photo  is BEAUTIFUL!

And hi, Alaina - glad to see you too, although I see your goings and comings on FB all the time. You look like you have built a happy and busy life and that makes me smile. The last time I saw you was when you were in the hospital after reconstructive surgery. You have come A LONG way since that day!!

So we went to our VA vacation last week, and it was low-key, but restful and nice.

Except for this ONE THING.  So my DH is a photographer and one of the key purposes on these trips is for him to take lots of pictures. And these are landscape pictures - with no people in them. But lately he has taken A FEW of me (under a little pressure, lol). So he takes a pic on a mountain top at the end of a hike. And i forget all about it. So when we get home, he is looking through the pictures on his computer and says he took a really good picture of me, maybe his best ever. So I go over to see. And there are these weird white lines  on the side of my head. I said "What are those white things?" And he says, TOTALLY CALMLY like it is no big deal, "Oh, that's your bald spot."  And I was like  - WHAT???????? My BALD SPOT???  Of course he backpedaled furiously - oh I meant, the wind must've blown your hair, etc etc (which was sort of funny to watch but I was pretty upset by that point)

I have been noticing one side of my head where I can see my scalp sometimes, and i mentioned it to the hairdresser and she blew it off like no big deal. My hair is very short now so maybe that's why. BUT STILL!!! I kind of freaked out and made him promise to delete the photo (and maybe I won't ask him to take anymore, lol).  But now I am thinking my hair really IS thinning to the point of being noticeable to others - I thought of you Helen, and wondered if it is my turn now. I always had VERY VERY thick hair (too thick) so I guess it would take a while to be noticeable.  I haven't noticed any hair falling out - but maybe you don't.  Sigh.

Judy I think of you so often. The sadness of the loss of your grandmother (although how fortunate to have her in your life for so long), and all the turmoil in Israel now. Our thoughts are with you so much for safety and our hopes and prayers for peace.

So Thanksgiving is a big deal in our family - big group trip up to NJ for a huge family gathering. A little loud and noisy for my taste but I usually seek a quiet corner, or even take a walk if weather permits, and have a few more quiet conversations with some relatives, which is nice.

Lots to be thankful for, of course. But for us on this thread, i don't think we need one day to remember that.

Love to all

Amy (baldy?)

ps.  Been on the AI for two weeks - don't see ANY SE's at all.

inthemoment

Hi Chelev, as everyone has been saying, it is so nice to see "sisters" return. Happy 50th..for me it seems like a loooong time ago (well, it was 14 years ago, so I guess that qualifies as a long time ago). It does my heart good to hear about birthdays, grandchildren, weddings etc. We all deserve some good things to celebrate. I guess we are all coming up on entering the beginning of our 5th year. When I think about it that way Chelev, it is quite amazing! I will be down in Fl in March to visit friends in Venice...looking forward to it! How far from there are you?

Judy, glad to hear you and your family are safe right now. I am hearing that there may be a chance for a cease-fire...let's hope so, although it is doubtful how long that will last. Helen, is your family ok there?

Amy, I can only imagine your face when your husband told you about your "bald spot". I know I have an area on the crown that is very thin, and I also had extremely thick hair - to the point I couldn't manage it and had to constantly have it thinned out! Now I have to practice a "comb over" to cover up that spot. I guess small price for waking up this morning, but sometimes vanity gets the best of me.

This is a good time to wish you all a Happy Thanksgiving, whether your country of birth celebrates this holiday or not. I know all of us who come here are thankful for many things - friends, family, safety, and most of all, that since 2009 we have been here for each other, good times and not so good, and we have our health (as fragile as that feels sometimes), and we are moving further and further away from the one of the most challenging times in our lives, and looking ahead. At times like this, I get all teary remembering our Lena, and pray that she is at peace. I wonder how rat pack is?

So, my sisters, Happy Thanksgiving to you and your families.



Love,

Geri

hrf

Chelev, good to see you back and doing so well. Happy Birthday ... like Geri, 50 was 14 years ago for me ... such a long long time ago. Nice to see several of our sisters return. It is coming up to that year 4 for me too. Amy, the hair thing is BIG. Today I had an appointment with the RO for a regular check up (have been alternating b/w MO & RO up till now)......anyway at my hospital they ask you to fill out a survey before you see the doc - like how u feeling? Thinking that no one would look at it, I filled it in honestly as I've been feeling quite down lately. Anyway, one of the nurses who knows me saw the form and came in - started asking me questions and I just cried. RO came in and was concerned so after she checked me over, she called in the MO....she is asking if I want to change from Arimidex to Tamoxifen - said it is only 1% - 2% slightly less effective but the se's might be easier - especially maybe stop the hair loss....couldn't decide what to do so am going back to see her again in a few weeks. Really don't know what to do. Anyone care to offer advice? I wonder if the AI affects my mood too. There are just times that I feel so overwhelmed and feel that no matter what I do, there are just some things that will never get better anyway......I still wish I could go back to who I was before bc. 

JudyNaomi

Helen, so sorry to read that you are feeling so low. It is completely understandable and normal to have periods like that. I have it too as I am sure we all do. There is so much to deal with, even if things seem normal to others on the outside. I don't take any meds, so I cannot help you with that, but I am sending you (((hugs))) and hope that you feel better soon.

I also used to have very thick hair and now it is much thinner than it was. Along my hairline above my forehead it is very thin and my scalp shows through around my parting. It always upsets me when I look in the mirror and then I try not to think about it during the day. Helen, I know you have been dealing with this for a long time now.

Amy, thank you for caring, it has been a difficult couple of months, and things are stressful here as you know. I am glad you had your vacation in the end.

Geri, thank you too for your kind words.

I can hardly believe we are almost in 2013, nearly starting year 4...

I am sending you all much love for a wonderful Thanksgiving (to all those who celebrate), and a wonderful weekend to those who don't. I am thankful for having all of you in my life every day. Enjoy your families and friends; these are the important things in our lives.

Hugs to you all, Judy xxx

Anonymous

Hi, Helen.  I have been on tamox after trying, quite unsuccessfully, the AIs (the se's were too severe) and honestly the only real se I experience is insomnia, which my onc gives me a prescription for ambien .5 mg, which does the trick.  I had a little bit of muscle / joint pain but it quickly went away.  I've been able to tolerate it very well, and given my strong reaction to most drugs, we're sticking with it.  

I too have a "bald spot" where my hair is thinner than in other spots, and it is noticeable when my hair is either combed funny or getting too long in that spot, it seems to make it more pronounced.  I thought everything growing back from chemo would fill it back in, but nope.  I don't know if it is part of thinning hair as we age or chemo related.  I'm blaming it all on chemo.    Helen, I hope that if you go on tamox, it helps slow down or stop your hair loss - you have been struggling with that for so long and maybe this will help.

hrf

Michele, thanks for your response. I hadn't heard of anyone else starting on AI and then switching to Tamoxifen. So this is a good thing to know. My MO said the Tamoxifen is slightly less effective in my situation but only 1 or 2 percent. Of course the hair may not come back - I know that. In the past 6 months, it has been coming out in handfuls. Not like when we were on chemo, it's a different pattern. But I really wonder if the AI is affecting my mood as well.



Judy, hope you and the family are safe. The news here is very alarming about what is happening.

Anonymous

It very well could be affecting moods, Helen.  I know when I had tried the AI's,  in addition to feeling the aches and pains like I was 80, I was depressed, cranky and not happy.  I have not been like that on tamox.  It might be worth a shot to try.  Best of luck with it, if you decide to try it out.

I am so troubled by the news of what is happening in Israel.  Judy, know I am praying for your safety.

AmyIsStrong

I was on the Tamox for 3 years. Had some SEs in the beginning and then not. I guess my body got used to it.  After the bleeding/cervical polyp/D&C thing that i went through in Oct, I went off it and took a month off. I didn't feel any different. Then i started Arimidex on 11/1 and it has been a few weeks and I dont feel any different on this either. I had been told that my body might be 'used to' the lower estrogen (from being on Tamox) and that it might not react obviously to the AI, so maybe that is true.

I've only been on the AI 3 weeks so any hair loss/thinning was definitely from BEFORE I started it.

Who knows. This is all very hard to pin down.

Happy Thanksgiving to all - whether you celebrate it or not, I am wishing you a wonderful day tomorrow!

And Judy - you are in our hearts every minute, for peace and safety.
Love

Amy

JudyNaomi

Thank you all again, things seem to have quietened down for the time being. I hope we will have a peaceful weekend. Helen, I hope you are feeling a little better, sending you hugs and support.

Sending you all much love for a good day and enjoyable Thanksgiving.

Hugs, Judy x

JudyNaomi

Hope you all had a good Holiday! (those of you in the US).

Enjoy the weekend everyone!

Hugs, Judy x

inthemoment

My Thanksgiving was wonderful - hope you all felt the same!  Happy weekend.

Geri

BetsyBuzz

Happy Belated Thanksgiving to all!

Helen, I am still on tamoxifen. My hair has thinned a bit but I'm not sure it's from tamox or from the chemo. I have had relatively few se's from tamox, except the biggie...endo. cancer. But if you have had a hysto, you won't need to worry about that se. I have pretty consistently rejected Als, as I did not want the joint pain or depression. It's been a good decision for me. I too had very thick hair once upon a time. Not so now but it's not bad either. I'm sorry that you and Amy are struggling with this se.

We had a very festive Thanksgiving. Three out of five of my siblings came & their spouses My IL's too. It was fun. First year ever I did all the cooking and did not get stressed. I figured life was too short to worry about details and it all worked out. I am grateful.

At the table we all shared one thing we were thankful for, I said a year of good health. It wasn't a perfect year but it was good overall. I have three more months to go before I can say I've made a year without a visit to the ER or hospital. I'm looking forward to my March anniversary.

Titan, congrats on the Buckeye's season this year.

Betsy

hrf

Hope all my American friends had a great Thanksgiving long weekend.



Judy, how are things in Israel?

JudyNaomi

Betsy, sounds like your Thanksgiving was fun. It is so nice when family gatherings come together and everyone enjoys it!

Helen, thanks for asking; it is much quieter this week and hopefully will remain that way. I work in tourism so last week was not great, but there has been a definite pick up this week. I think the kids are still a little nervous, but we just carry on as normal and hope that we can all get on with our lives in peace.

We are starting to get a bit of colder weather here now, but still not what I would call a proper Fall or Winter. I do find myself tired alot, but work is hard and stressful so I am sure that has something to do with it. I am also not a fan of shorter days, when I leave the office it is dark outside. I think the seasons definitely affect my mood. I am trying so hard to watch what I eat, but my "spare tyre" around my middle seems to be very attached to me, LOL! I try not to become obsessed with it; I excercise 4 times a week, for my good health more than anything and try to accept that I will more than likely not go back to looking how I did before BC and the menopause.

That is enough rambling from me; hope you all had a good weekend, a relaxing and fun Thanksgiving and are all feeling well. Enjoy the rest of the week !

Sending hugs to you all, Judy x

AmyIsStrong

Lovely Thanksgiving here. And nice long weekend. We cleaned our (large) house from top to bottom. I wish tomorrow was Christmas so everyone would be here when it was so clean! 

Judy - i am getting more used to my 'spare tyre' as well. I fought so long/hard at the gym but it really isn't going away. I am reconciling myself more to it, but am determined to stay fit and healthy as well (via the gym) even though I do not look the way I did pre-bc and probably won't get there again.

I talked to a lady this morning on the phone (for work)who told me that she had an anyuerism removed recently. She said it was found during a routine u/s for something else entirely and they told her they had to wait until it grew large enough to remove, which took THREE YEARS and she had to live/wait that time with the knowledge that she could die at any moment. Damn! I asked if it changed her a lot, and she said "Well, yes, I have very little tolerance for foolishness anymore."  Now THAT is a long time of waiting. I'm glad she had a happy ending and sounds like she is doing great now. But wow - something to think about. Three years of wondering if every moment could be your last.

Everything else is fine in my world. Glad to hear from you Betsy, and that your holiday was good.

Love to all - 

Amy

JudyNaomi

Amy, so pleased you had a nice Thanksgiving and long weekend.

That is quite a scary story you wrote - I cannot imagine the fear that she must have lived with all that time.

I don't remember if I told you about my friend in the US who had BC the same time as me and last Fall she was sick again? I have just heard that she is now sick again - third time! I understand from the people that I have spoken to that it may not be such good news this time,(not that it is ever good news, but I think you know what I mean...) but I am going to call her this evening and talk to her myself. I have felt sick to my stomach ever since I heard. We went through it together the first time and the second time she seemed to come out of it ok. But now this...

It is like my worst nightmare come true; I go to check ups and am convinced that the Onc will find something, and then am so relieved when she says that I am ok. I don't think that I am prepared for being told otherwise, but are we ever? I cannot imagine what she is going through now and how she has the strength to fight the fight all over again.

I want to be supportive when I talk to her, I hope I can find the right words. Hope you are all doing ok today and thank you listening.

Hugs, Judy x