Starting Chemo April 2009

Quick update from me - new well is drilled. LONG way to go before we can use it but at least we are making progress.

Ruby spent the night with me Sat night - first time. Went great. Beyond thrilled.

Business deal is over. Sellers were unreasonable. Am sad but resolved.

Saw a neurologist for some intermittent motion sickness I am getting from SOUND, rather than motion. He thinks maybe a small tear in the lining of my ear canal. Getting CT scan this week. We will see. I have had it for decades, but it is getting worse and starting to affect my QOL. We'll see what the test shows.

All else fine with me. Tired of being cold already and it is just November. Ugh.

But - glad Pink-tober is over. I really hate all those reminders everywhere.

How is everyone else, especially Geri's daughter?

Love to all! Amy

Judy, glad you enjoyed your trip to London. Amy, I hope your well is working by now. Geri, how is your daughter.

My son seems to be managing his symptoms for now but there is nothing he can do about the heart issue. Just have to wait to see what the further tests tell us.

We have another baby on the way. Son #2 and wife are expecting baby #2 in May. This will be grandchild #5. They are all so special.

Oh Judy I am so sorry things have been hard. "Reached a breaking point" sounds very painful. But maybe it had to get to that in order for you to be willing to reach out and start to get better. My strong suggestion is that you think about what will help you (what skills or strengths you need to develop in order to cope better) and be very directive with the therapist about helping you gain/develop those. I believe in therapy, BUT i also have seen many times where it is used as a place to vent (which has some value) but not to really grow. And some therapists will allow that to go on and on (and on and on). I really believe that a good therapist helps you grow so that you do not need them anymore - and not all of them do that! I am proud of you for taking this step!

To my great surprise, my CT scan came back showing a 'Superior Semicircular Canal Dehiscence' - which means that there is a true physical reason I have been getting sick in noisy crowds. It has to do with a thinning of the bone in my ear canal, allowing sound to penetrate improperly. For YEARS I thought it was some sort of personal weakness/character flaw/panic issue and felt very guilty about not being able to overcome it. To learn there is a physical issue at the root of the problem is quite a change for me to absorb. The neurologist referred me to a special ENT guy who focuses on this type of problem. I have an appt on 12/18. I have read online that there are a few surgical repairs they can do, but I am not sure if I would do that, or if I am even a candidate. Will learn more in December.

Ruby came to my house for her first overnight - it was wonderful. Pic is here if you want to see: Visit to Grandma

AND they are SUPPOSED to come and work on the well on Friday. Cannot believe it is taking this long, but I am more or less used to it by now, so it is not bothering me.

Geri - how is your daughter doing? Please bring us up to date. This is a very very long process - I am sure it is very stressful for all.

Helen - another baby to add to the family. So thrilled for you. And healing thoughts to your son - anything cardiac is upsetting.

Love to everyone - almost Thanksgiving here, and as I reflect, I am always so thankful for each in our little group.

Amy

Hi ladies, thank you as always for your concern. My first session went ok and I think I may well be able to work with this therapist, I will keep you posted. Things are still not great at home, but we try to keep on going and live to fight another day...

Amy, the photos are adorable! Please also keep us posted on your ear situation and I hope that you are feeling ok.

Helen, I really do find that I am constantly focused and busy on doing things for the family and worrying about their happiness and well being. It takes a lot out of us I find.

Geri, I am thinking about you and your family often and sending you good thoughts and prayers every day.

Wishing all those who celebrate, a very Happy Thanksgiving this week! I still miss the Holiday Season in the US.

Much love and hugs to you all, Judy xxx

Hello ladies, just popping by to check in with you all. I hope that you are all doing ok and enjoying the lead up to the Holidays.

I am doing ok, the therapy is going well so far and I feel comfortable in my sessions. My daughter has actually gone away with her class for a few days this week, I hope she will be ok. She will check in with us regularly. She was anxious to go, but having taken that step is definitely progress for her. I am worried, but each small step is important.

Thinking of you all and sending you all hugs, Judy x

My ear/brain problem is getting worse fast. I see the specialist in a week and cannot wait. If there is surgery as an option for me, I am more and more ready for it every day. Now, I get queasy/nauseous from the sound of my own voice very regularly if I talk too loud. I got it on Sunday eating taco chips/salsa from the crunching. It is very unpleasant and I feel 'off' a good portion of the time now. I am trying to stay very quiet and low key and speak quietly.

I am starting to think strongly that the Arimidex may have caused this bone thinning. I had this before but MUCH less severe. The increased severity (due to the bone thinning) coincides with my timeline of being on the AI. I will see what the specialist says. I know the onc will say I can stop the AI - she offered me to stop it last time I saw her, but I wanted to continue (before this whole thing started worsening). So if I have this problem and the AI may be contributing to it, I know she will agree with me going off it. She said she thinks my tumor was HER2+ driven more than ER+ anyway so she isn't so convinced about the need for the extended AI dosage.

Other than that, life is wonderful. Our new well passed its first water test. The second one is tomorrow - if we pass, we get our certificate and we can drink it. I am SO tired of lugging water bottles. Glad to be at the end of this whole thing. It's been months!

Looking forward to Christmas with a little one around - Ruby is talking non stop and is so much fun.

I will let you know what the specialist says.

Judy - glad the counseling is worthwhile. Helen - please post the scan results. I trust they will not show anything bad.

Love to everyone

Amy

Just a quick update...life has been SO hectic that I truly haven't had a moment to write.

The good news is that in 9 days I will be a grandma. They will start my daughters induction on the 22nd and hope it goes well and she can deliver vaginally on the 23ed. They would prefer not to do a C-Section because of all her previous surgery and grafts, but if she labors too long or too hard, that can increase her blood pressure and also affect the grafts. Very complicated and my poor daughter is scared but determined to do whatever she has to to give the baby the best outcome.

As for me, I understand everyone's stress - along with the fear of will my daughter and grand daughter be ok, my niece is constantly on my mind. They just did an 8 week pet scan, and there are no new lesions in her spine, so that is very positive news. They will continue blocking her Estrogen and no breastsurgery planned at this point (?) She is being treated at Duke Medical Center in North Carolina, near where they live, and for those who are familiar with Duke, it has a wonderful reputation. The other issue is that my brother (her father) has also tested positive for the ATM and CHEK2 genes, so my other 2 brothers and I will also need to be tested, and on down the line depending on our results. I haven't told Kim about my brother being positive yet - She can't do anything about it, and it will just be another thing for her to worry about. As you may be able to see on this post, it is Sunday morning at 5:30 AM and that is because I can't sleep with all these thoughts going through my mind!

Thankfully I retired on December 5th, so one less stressor - I will be putting in 10 hours/week from home, just to keep my connection there and help with expenses.

Wow, this started with the intent of a quick update, but as I went on, I realized there is no such thing in my life right now.

Amy - I'm glad you finally have your well dug, and hopefully by now, you can drink from it - we never realize what the seemingly mundane things in our life mean until something like this happens. You sound like you are madly in love with Ruby, as it should be - I will be looking at her latest picture as soon as I finish writing. I also am hoping the ENT can offer you some help with your hearing...I have a significant hearing loss in one ear and a moderate in the other (also on AI and it was pre-existing, but definitely getting worse quickly). I haven't had time to have it checked, but I would be interested in what your doc has to say). Once we have our little girl, you can tell me how to upload and we can share pics! I am sorry that your business did not sell as you had hoped, but I'm certain that means there is a reason, and something better is in store. When all this happened to my daughter and niece, I remembered a saying that has helped me through some frustrating times "We plan, and God laughs". How true that has been for me - I have stopped planning and just surrendered.

Judy - best news I read...you are taking care of yourself! I am sure the time with the therapist may not immediately solve your problems, but how happy am I that you have someone JUST for you!

Helen Congratulations on Grandbaby-to-be #5! Very exciting. Prayers that your sons tests do not turn up anything serious.

Well, I hope I haven't taken up a whole page with my "quick note" but I think I've brought you up to date. Happy Hannukah to those who celebrate (I know Helen and Judy do..not sure if there is anyone else)

The next post, I will hopefully have news of a beautiful baby girl,👶 a healthy mommy 👩 and the start of a wonderful new adventure🙏🙏

Geri

Oh Judy, words cannot express my sorrow at your news. We hurt so much when our children struggle. I am glad you have a therapist to help you during this time. My love and prayers for you and your whole family.

Helen - waiting to hear about your scan as well. Please post when you have the results.

Geri - only 3 more days until the baby! I am counting down with you. Please know we are all pulling for your daughter. PLEASE send details as soon as the baby is born. You have such wonderful times ahead, but I know that it is scary in the meantime.

I saw the specialist on Thursday. He was a very odd, mad-scientist type of doctor but was clearly brilliant and specialized in my type of problem. He said he understood everything and it all made perfect sense to him. Apparently I have a sound-sensitivity-induced migraine problem, and the bone thinning in my ears is causing more triggers for it, but that thinning is NOT the root problem. (It just makes it worse.) He wants me to try a pill daily for 2 mo which is supposed to help stop it from happening in my brain. I read the info on the drug and it scared me A LOT. I hate the daily meds concept (as I know all of you do as well). I think I will TRY the drug, and take it only once daily (mornings, for daytime) instead of 2x/daily which he prescribed. He wants me to take the pill and experiment - go to places where the noise would normally make me sick and see if the pill helps. Of course that concept is terrifying to me, but I did agree to try it. I also have to have 2 balance tests which are run at the hospital. That is a little scary too but my husband will come in case I get affected and can't drive home.

So I am on my way to getting help, although it is not going to be a quick or smooth road. But every step is getting me closer and I am trying to take comfort in that.

I skyped with my (elderly) father yesterday when I was with Ruby, so he could see her. He seemed somewhat confused by the concept and would not stop talking, so i had to speak loud to interrupt him, which was bad for me. After about 10 min, I could definitely feel the migraine starting from the loudness of my own voice. I concluded the call and stayed quiet for a while and the feeling went away. So I AM getting better at recognizing the triggers and controlling the situation. But it is not easy and kind of discouraging. Not sure if surgery will be warranted, the doctor wants to wait and see how the drug does.

He DID say "I am going to help you get your life back" and I took great comfort in those words.

Seems like our little group is facing our share of challenges lately. The only good news is that Geri is at the edge of grandmotherhood and Helen has a new grand on the way. Hang in there everyone.

Love - Amy

Geri - today is the day? Thinking of you - sending love. Welcome baby!

Hi everyone. Wishing everyone a very happy and healthy holiday season. I'm also thinking of our children and grandchildren. I know several us have struggles and worries about our kids.....may they all be well.

My son is under the care of an excellent neurosurgeon and cardiologist. The meds seem to be helping and he is making lifestyle changes which are so important. He had a heart MRI last week but haven't heard any results yet so we still don't know the degree to which the heart/valve disease is progressing.

Also the U/S showed a very very slim possibility of a problem with the new baby so while the doctors are being very optimistic that all is well, my DIL will be having some further chromosomal testing just to be sure.

Happy NEW year everyone...Life has been good to me. i quit working in Sept, we left on a three week trip to France and had a wonderful time. My husband retired too so its been an adjustment for both of us but we are loving it. i am so happy to be out of my stressful work environmnent.

i had a bit of a scare in Oct. Went in for my first ever breast MRI, didnt think anything about it until I got the call back. Had an ultrasound...so now they are monitoring the area. TG NED. its on the non bc breast so i told my dh at least if there is a problem they can make the girls match up. but that is a story for another day...or hopeully never.

my resolution this year is to get and stay healthy. i start my second tia chi class next week and i also am taking a gentle yoga class.

wishing you all health and happiness this next year.

hugs

betsy

Betsy it has gotten very quiet around here lately. Titan does not come around much. It is mostly Judy, Geri, Helen and me, although we are always thrilled when you or Titan or Alaina or Florbo or anybody else comes by to check in.

That game last night was amazing. The Ducks left no doubt!

So good to hear from so many ladies this past week or so. Helen, I hope that your son is feeling well and that all is ok with the baby. Sending love. Please keep us posted.

Amy, so sorry to read that you are having family issues; Sending love to you. I was so happy to read that Ruby brought so much cheer to your Christmas.

Betsy, all sounds good with you and you sound positive, other than your scare. Hope you are doing ok with that.

Titan, sorry to hear that you too had a scare, but relieved to read that it was normal tissue.

Geri, please come by when you can to let us know how things are.

Unfortunately, things with my daughter have declined and she is back in the hospital; we just could not keep her safe at home, it is heartbreaking, but we had to face the reality that she needs the kind of help that we cannot give her right now. We are meeting with her doctor this evening and one of us goes to visit her every day. It is definitely taking its' toll on the family and my youngest is really having a hard time with it. We are due to celebrate his Bar Mitzvah in April and now we are not even sure that she will be there. I am trying to take it one day at a time. We have decided that he deserves his day and we will make it as special for him as we can. The family from London will be coming out and hopefully, things may look a little different then.

My therapy is going well and I think that the medication may have started to kick in as I am not feeling quite so down as I was before. Still lots of challenges, for all of us I can see.

Sending hugs to you all for a 2015 filled with only good health, happiness, trouble free days and lots of laughter for us all!

Much love and hugs to you all, Judy x

Amy, I share your concern about Geri, her daughter and the baby. I hope we are worried for nothing. So glad the meds are helping you.

Betsy & Titan, I think we have all had scares....whether a new bc or possible mets. We will always have that cloud over our heads I think.

Judy, I agree with Amy's advice. But nothing worse that having a child who is not well. It's very hard.

I'm feeling a bit down these days.....the cold, dark winter doesn't help. Mostly I think I see some friend relationships changing and it makes me sad. But I guess people do drift apart for a variety of reasons....not necessarily anyone's fault but life changes.

Judy sending you a cyber hug! It sound like life has been tough for you, never a dull moment! You are a strong , loving, caring mom, hang in there.

Amy and Helen you both sound like you'very been dealing with health issues too. Sorry to hear. Helen, I think you are right, this is all par for the course.

GOOD THING WE ARE ALL STILL HERE! Sending everyone a big hug.

PS I hope you are wrong about Geri...I will pray all is well with her and her family.

To my favorite Nut...Go Ducks! May the best team win...I'll be thinking about u tomorrow.