Starting Chemo April 2009

florbo

Helen--I will ask about the Vagifem.  Somehow, I don't think my MO is going to say yes because I'm ER + and that little amount donw there may be absorbed.  But I will ask.

Yes, I think daughters probably are more attuned to mom's feelings.  However, I know that you WILL have a great time.  The Bazinga sounds like so much fun.  What a way to celebrate.  Again, I'm sending you prayers for tomorrow's rehearsal and dinner, and then the wedding.

Titan--I will be thinking of you as you do all your appointments.

Judy--How is the head?  Better after the fun night with friends?  Have a good week and remember to take care of yourself despite your heavy work schedule and caring for hubby.

I had a good Mothers' Day.  I got to enjoy a brunch at a fancy restaurant and have my 11 year old ask me, "Mommy, would you like a mimosa?"  It's been a dream and a joke between my husband a me for the last 8 years.  I told hubby that when my boys were finally old enough, I'd like to finally have a Mothers' Day brunch at a formal place with china and silverware while being served a mimosa.  Then I had a fabulous nap!

AmyIsStrong

Happy Mother's Day to all mothers out there.  I had a very nice weekend and am feeling MUCH better. Still the hot flashes but not the mood problems. Who knows why or why not, but I'm enjoying feeling good today.

Re the dryness 'down there' ..... I HOPE this is not TMI for anyone but... I have tried a whole variety of lubricants and never liked them - too messy, too sticky, too yucky, etc.  Finally a friend suggested one to me and it is AMAZING. It actually rubs into your skin like a moisturizer in addition to helping with the issue at hand.  The brand is called P'jur and the specific product I am recommending is called Eros Women's Bodyglide. I ordered it from a site called tootimid.com but I am sure it is other places as well.  I actually recommended to to a coworker who was complaining about the same issue (don't know exactly HOW that came up in conversation, lol). I got an email from her this week and she said she ordered it and LOVED it. I cannot recommend it more highly. Amazing product.

Helen - I get a lump in my throat thinking of you dancing at the wedding.  After all we have been through (and are still going through), it is so sweet to be present and healthy at the milestones in our family.  I hope you DO get makeup done - I did for my daughter's and step daughter's weddings (I am hopeless at makeup) and it did make a difference and the pix of me are....well, I would say they are acceptable. But others said I looked wonderful.  I have a song that has been like a mantra to me through this whole bc ordeal - it is called "I'm Still Standing" by Elton John.  It has seen me through a lot of hard times.  Maybe find it on Youtube and give it a listen. Maybe it will help you too. It plays through my head and gives me that heads-up fighting spirit.  

I believe you will walk down that aisle (and dance and everything else) with grace and dignity and your head held high. And they always say a smile takes years and pounds off our appearance. So SMILE!  
PS - I wanted to read about the ceremony - it is spelled MEZINKA. Anyone interested can google it for details. I never heard of it before - but ENJOY!!!

Going to Philadelphia to spend tomorrow/night/Tues with my daughters. They are both still struggling some with the situation with their dad (who is actually doing ok now).  So they need some 'Mom' time, and we will make it our little Mother's Day celebration as well.

Flor- the Mimosa story cracked me up.  I am glad you enjoyed your dad.

And Judy - your husband sounds like he is turning the corner. I find I can deal with ANYTHING as long as I am making progress in the right direction, no matter how gradually. Hopefully he will be able to as well, now that he is starting to see improvement.

Love to everyone!

PS - Titan and Judy - deep breaths this week and next for your appts. I have full trust that you will be walking OUT of the labs and offices with SMILES on your faces and good news. We are right there with you every step of the way!

hrf

Amy, thanks for looking it up and finding the correct name. I will check. Yup going the whole way.....hair, makeup, mani/pedi....doing everything.



Florbo, I am 100% ER+. I went to my gyno first and he made me check with MO but he swears it is safe. It actually thickens the vaginal wall which makes it impossible for that tiny bit of estrogen to get absorbed. I've been on it for more than 3 1/2 years....started several months following Arimidex. It truly was a quality of life issue. I really trust my gyno and have been with him for more than 32 years. He gets annoyed with MO who don't understand how to address QoL issues for cancer patients.



Titan and Judy, thinking of you and sending positive vibes.

JudyNaomi

Helen, that sounds fantastic! What fun!  Enjoy the rehearsal and dinner - so nice to have so much celebration in your life. May it always be that way...

Hope the Mothers' Day lunch was fun for you too. Florbo, glad you enjoyed your lunch too.

Amy, a beatiful post, thank you again, I am feeling very emotional this week. I am so happy to read that we are also dealing with the good times in our lives. Hope you have a good time with your daughters too.

Hope everyone is feeling well today, hugs to you all, Judy x

Anonymous

Hi, everyone.  Happy Mother's Day.  Had to go out of town last week for my great aunt's funeral - she was 85 and lived a wonderful life before alzheimers took her away, so it was a relief to end the suffering.

Day before that was my mammo and I just go the results back - all okay.  Yay - no extra views, no come back in 6 months to check anything.  That's good!  This afternoon is the onc and she and I will discuss tamox.  I have been off it now for a couple of weeks and I feel so much better - the bone aches and pains that were getting worse and worse are gone, the jaw and headache pain, gone, and even the chronic constipation is letting up.  Insomnia is still there, maybe it will get better, maybe it won't.  It's amazing at how much better I feel.  Before I stopped it, I was honestly wondering if this might be the start of bone mets.  I don't feel that way now.

Even though I have been in menopause for a long time (surgical, since 1997), every time I start or switch onto an AI or tamox, I get hot flashes for a while.  I was getting them somewhat regularly on tamox, depending on how warm it is outside.  Not seeming to have them now as much now that I have stopped them.  On tamox, since we were talking about "that area", I wasn't too dry.  I'll have to see now how dry it is.  We use lots of lube, but since I've been in meno for a long time, it feels dry and arid and it is sometimes painful and burning, no matter what we use.  You become creative at what else you can do, at least we have had to be.

Have a great week and i'll report from the onc.  Hugs to you all - I loved reading about your mother's day celebrations and hope everyone had a beautiful day.

JudyNaomi

Chelev, sorry for your loss, sending love. Let us know how the Onc appt goes, thinking about you.

We begin a Holiday tonight called Shavuot when we eat mainly dairy foods and lots of cheesecake! This is definitely one of my favorite Holidays...I always remember the "cheese cake dialogue" with Lena, it is funny what can make you remember someone...she is very much in my thoughts today.

Hope you are all feeling well, sending hugs, Judy x

inthemoment

Enjoy the cheesecake Judy! Good luck with your appointment Chelev. Everyone else, have a good day!

Anonymous

Ooooh, I love any holiday that starts with cheesecake.  

Have to go back in 5 weeks - not really 100% sure why - but think it's because I am on a tamox holiday for this month, and start it back in June.  Kind of a weird appointment all around - there is construction in the building, so the A/C wasn't working well, and right after my onc did the body / lymph node check, she had to take a phone call, came back in, and said, "I need to palpatate your abdomen again" and then the fire alarms went off due to construction workers mistake, and she had me get dressed, just in case it was for real and we needed to evacuate, and then we went out in the hall, without going over bloodwork or anything and there was so much confusion over the fire alarm, that the nurse handed me a card saying I needed to come back in 5 or 6 weeks.  I am thinking it is simply to follow up after I start back with the tamox, but it is still kind of nerve wracking because I have never been asked to come back so soon.  Oh, the things that go on in your head.

JudyNaomi

Goodness Chelev, that doesn't sound like a calm appointment at all - so sorry about that.

Try not to worry about her wanting to see you again in 5 weeks. I know that our imaginations run wild, but I am sure if she was worried about something, she would have either talked to you today or asked you to come back sooner. Can you call there and talk to her about it? Let us know if you do.

And thanks Geri, I have already started enjoying the cheesecake!

Sending you all hugs as always, Judy x

AmyIsStrong

Chelev - that sounds like an INSANE and totally chaotic appointment. If it were me, there is NO WAY i would wait and try not to worry for five weeks. I would call the admin for your onc and tell her that due to the chaotic nature of the appt, you did not get the full info you needed; and that she needs to ask the onc and call you back with full info on why you need to be seen so soon. That is absolutely what i would do. It is NOT WRONG to put a little pressure on others, to relieve some of the pressures on US - esp when we are the patients and they are the professionals. Remember when someone on here (sorry i forget who) said that when the doctor says "hmmm" while examining her, it makes her start to panic.  Well, same thing here. Five weeks of waiting without knowing why? NO! (Please call and put your/our mind(s) at ease.)

Judy - bring on the cheesecake. Enjoy/savor each bite. And raise a fork to Lena for all of us.

I guess everybody read/heard about Angelina Jolie. Everyone around here is talking about it. I feel for her, as I do for all who suffer from bc or the gene abnormality. But maybe her going public will bring more attention/money to this disease. if so, then something good will have come out of that. Otherwise, it's just very sad.

hrf

Yes, heard about AJ first thing this morning. Judy and I also have BRCA. Maybe something positive will come out of this. Interesting that she is being called "brave" when so many of us have done the same. I never felt brave.

AmyIsStrong

Helen - I don't believe 'bravery' is an emotion that you feel or do not feel. Rather, it is revealed in actions that you take.  I consider you VERY brave. We were scared but we moved forward and kept moving, kept fighting, kept going, and we still do.

I talked to someone who has a family member who has said for A YEAR that she 'knows' she has cancer. She had some serious symptoms. rectal bleeding etc. She did nothing about it all that time, too scared to find out. Recently it got worse and she could not avoid getting medical care. Cancer? Yes - and very questionable whether treatment is going to work, since she waited so long. That is not brave.  She have two young children. A terrible thing - and quite probably preventable if she had been BRAVE.

So YES, you/we/AJ are brave. To walk TOWARDS the challenges, whether we want to or not, whether we FEEL brave or not.
Every test, every surgery, every treatment, every mammogram, every follow up visit, every wait for test results - those prove us brave without question.  I feel very strongly about that. 

I also hope AJ's coming forward is helpful to the bc community and all women. One thing I DO think is brave about her is that now EVERYONE will be looking at her chest to see if the surgery looks good, or natural or whatever. I said this to my daughter today and she said she thinks someone like AJ is used to people staring at her chest. I know I would hate that but maybe it is true.

To ALL of us brave women - I am proud to be one of you!

inthemoment

Chelev, you most certainly should NOT have to wait and worry for 5 weeks. I agree with you that it is likely to follow up on the restart of tamoxifen, but from the one who just went through the "hmmm" anxiety that Amy refers to, sny reduction in our stress levels is a no brainier...so call and ask for the onc.

Amy, I agree that there is a inherent bravery in every action we take when dealing with this disease. The one thing I know is that when I decided to have the mastectomy on the non/affected side it had nothing to do with bravery...quite the opposite feeling, it was fear that motivated me. I read somewhere today, from a medical ethics professor, that questioned AJ decision based on his opinion that her "real risk" of dying from breast cancer was rather slim, since once the BRACA gene abnormality is known, she would be carefully monitored and any breast cancer would be found very early. He went on to say she could have waited many
years before doing this, since there was no immediate sign of cancer

So, pick option 1 or option 2:

Option 1 - we give him a diagnosis of "early stage breast cancer" and tell him he is prohibited from worrying about it

Option 2 - we draw blood for the genetic testing, look at the lab results in front of him, say "hmmm" in a very concerned voice and tell him we'll share the results with him in 10 years.

WHY are intelligent people so stupid! Since we are speaking of Lena lately, can you just imagine her response to that? LOL, our board would be shut down for profanity.

Everyone have a stress-free evening - we deserve it! After this discussion, I could really use some cheesecake, Judy.

hrf

I'm sorry but that medical ethics professor is an idiot! He doesn't know what he is talking about and clearly knows nothing about the disease of breast cancer. We all know that the screening is not as accurate as it needs to be. Mammograms miss a lot of cancers. And we also know that finding it early is no guarantee of a cure. Being BRCA myself, and being monitored closely for 10 years prior to my first dx and then being even more closely monitored I still got a second dx. We also know that BRCA women can get dx in their 20's and 30's. it is not an old lady disease. And who the h*** wants to go through chemo, rads, and have to take drugs with terrible se's?I hate when idiots get public exposure and give bad information.

florbo

You ladies are some of the bravest people I know.  My 7 year old had asked me months ago if knew super heroes.  I told him yes.  I know a bunch.  He asked who were these super heroes.  I showed him the women on the BCO forum.  

Helen--how did the rehearsal dinner go?

Chelev--sorry that the apoointment was so rushed and now you have to wait.  

Judy--I'm willing to take a carton of lactaid to enjoy cheesecakes galore.

I finished rads today!  Woohoo!  I feel like bacon, look like a piece fo bacon, but unfortunately do not smell or taste like bacon.

JudyNaomi

Chelev, did you manage to call the Onc's office and get some answers? Please come by and let us know. Hope you are feeling ok and not too stressed about this - we have enough stress in our lives and don't need any more.

I think that I definitely felt more fear than bravery when I was going through my BC. People around me told me I was brave, but I certainly didn't feel it at the time. But if I had to look back now at what we have been through, I think that we were/are braver than we think we were. As Amy wrote, we walked towards all the challenges that we had to face, our surgeries, treatments, side effects and the numerous other impacts the BC had/has on our lives. We can always say that we had no choice, but we always had a choice and the fact that we took hold of our situation and did everything that we could to help ourselves stands for so much. And most of us are here to tell our story...

Florbo, I like the thought of being a super hero! LOL! Congratulations on finishing your rads : - )

Helen, hope the dinner and the weekend went well. Enjoy the last few days leading up to the wedding and sending you many congratulations!

Well ladies, the cheesecake was fabulous, and Lena was most definitely in my thoughts when I was enjoying it...

Sending you all hugs for a great day, Judy x

inthemoment

Congratulations Florbo on completing your rads!

JudyNaomi

Wishing everyone a great weekend! Helen, congratulations!!! Enjoy the wedding and looking forward to hearing all about it.

Love and hugs to you all, Judy x

Titan

Any holiday that involves cheesecake has to be a great holiday...I'm in...could you send some my way?  Cheesecake is the ONLY dessert that I will never turn down...

Never thought I was brave...lol...just something that I had to do...but hated every minute of it.

JudyNaomi

Hi ladies, well I had my check up this morning, but when I arrived the Oncologist had called in sick - so I have to go back on Wed. I did have my ultrasound though and that was clear which was a relief. We have rescheduled for Wed morning...a little frustrating but nothing I can do about it.

Helen, hope the wedding was fun and that you danced the night away!

Titan, have your had your appt this week yet?

Hugs to you all, Judy x

hrf

Hi everyone. Welll the wedding was beautiful. Everything was perfect. It was a very happy event with much laughter and much dancing. I got a little misty when I took his arm to march him down the aisle but regained my composure quickly. Everything worked out. They are perfectly matched, both enjoying the same things and very sensitive to each other. So now I have married off all my children. I've done my job. Now their wives can take care of them.

Titan

Good stuff Helen..you did it...!  proud of you lady....

had the mammo today.....don't know anything yet...now that I am back to being a "normal" person...the mammo is not diagnostic anymore...which sucks...so now I wait...

JudyNaomi

Helen, so happy to read your post that it was a beautiful wedding! Wishing you and your family only happy times to come in the future!

Titan, how long do you have to wait for the results? Keep us posted...do you have the Onc this week too?

I am back tomorrow to see the Onc, hope it will all be ok.

Florbo, how are you feeling?

Sending you all hugs, Judy x

Titan

Hoping to hear today...my onc appt is tomorrow also...will be thinkin of you too! 

AmyIsStrong

Helen - SO happy to hear the wedding went well. I wish the happy couple a lifetime of joy together.

Titan - good luck, I am sure the mammo will be fine. BUT I totally get the strain of waiting. Our cancer center lets you schedule the mammo and the surgeon visit 2 hours apart. So you go right from the mammo to see the surgeon and she has the results when you walk in. And even THAT is a stressful two hours. So a few days is TOO long. I would ask if they can do it my way next year. That's how they should handle ALL mammos for bc patients, IMO.  Waiting SUCKS and should be minimized in every way possible.

Hang in and report back your good news.

Judy - will wait to hear from you too!  I never worry about seeing the onc because all they do is ask ME how I'm doing. So I figure if i say I'm fine, they will agree. it's the mammo or other tests that cause the stress.  If your u/s was all clear (congratulations), is there any other element of the appt that is worrisome, or just BEING there at all? (Hey, I get that too!)

Love to everyone. Amy 

Titan

Mammo was fine....onc appt. tomorrow morning...sigh...1 down 2 to go....but at least the mammo was over...I can handle the appts...feel fine

JudyNaomi

Good news Titan! Glad the mammo was clear. Let us know how the Onc appt goes.

I saw the Onc today and she said I was fine. She examines me quite thoroughly, the whole neck area etc, I find that worrying, but she didn't feel anything which was a relief. Today I saw her in the outpatients department which is where cancer patients come for their treatment. (I usually go to a different department to see her). I found it very unsettling and came out and found myself crying my eyes out uncontrollably. I bought myself a coffee and sat down to calm myself and then came to work. It clearly had a much greater impact on me than I had realized. I am exhausted now...

Thank you all for being here, hugs to you all, Judy x

Anonymous

Hi, ladies.  Okay, after emailing my onc nurse about one more se from the tamoxifen that occured to me that I was NOT having since stopping it - increasing blurry vision that I was putting down to aging, and was trying to augment with stronger readers has cleared up and I can read clearly now with the readers without squinting or anything - my onc called me on Saturday morning to discuss.  We also discussed my bloodwork that we did not go over at the crazy appt.  It is all fine.  She simply wanted to see how was doing after resuming the tamox on June 1.  But, given I was having vision issues that I did not realize were related, she said NOT to take tamox anymore, and get an eye exam before my appt. with her on June 17.  Apparently tamox can cause serious and permanent eye issues, including glaucoma or cataracts.  Yikes!  So, I have gotten insurance preauthorization and will be calling my eye doctor this week to get in next week.  Sheesh.  This has completely pushed me toward not wanting to take anything more.  I feel great without the se's - am finally not constipated after 3 years of that getting worse and worse, but the eye thing?  Nope.  Once your vision is screwed up, it is screwed up.  So . .. I'll let you all know how that goes.

Glad to hear everyone's visits are going well, treatments are being tolerated and everyone is doing okay.  Helen, I am so happy you had a great time at the wedding - you deserve that so much!

Hugs to all, and talk to you soon.

florbo

Helen--I'm so proud of you for handling all the details of the wedding with aplomb.  The wedding sounded beautiful and I am so happy that you were able to dance and enjoy the weekend.

Judy--It must have been so unnerving the other day!  I wish we were all closer so we can even make it to appoinments with one another if no one can accompany us.  I hope you are having a better day and better week.

Titan--So glad the mammo is clear.  I had no idea about the eye changes with Tamoxifen.

I'm doing a bit better.  Peeling all over and itchy everywhere.  I like to spend my days topless with Vitamin E oil all over my chest.  I've turned down quite a few lunch dates because I rather not wear clothes.

We had really bad storms and tornado warning going off.  This didn't help considering the tornadoes that flattened the 2 elementary schools in OK just the day before.  I was a nervous wreck getting the safe rooms ready and wondering when I needed to get my kids.  Last year in April, I was up volunteering at school when the sirens went off and I was under the tables with a 3rd grade class for over an hour.  My boys were in restrooms in separate wings of the school.  Our school is pretty safe.  It is definitely safer than our house.  It is just a hard call as a parent when to get your child or leave your child in a safer place.

On the way back from my breast surgeon's appointment last Thursday, I was at Costco getting gas.  The woman behind me scraped the side of my bumper when leaving.  I was parked and got out.  God was watching out for me.  She came out, saying it was her fault, showing her insurance card and telling me to take a picture of it.  A man comes by and give me his information as the witness of the accident.  I get home, kind of numb from everything.  I called her insurance company and she had already started a claim.  I go to school to pick up my kids and found that I got a voicemail from the lady.  She called to let me know the claim number and everything.  I just thank God for putting me in the best possible situation in that scenario.  It just was so nice to have restored faith in people.

Titan

Judy..glad your appt. went well..mine did also...in and out in 30 min...one more with the BS and I am done for six months..

Can I tell you guys that I'm so ready to be DONE with cancer....I just want someone to say that I'm cured and get out of here..and that I never will have to go through this again...ah well..that won't happen.