Starting Chemo April 2009

Geri, snow this early is not acceptable - you have a right to complain.

I hope i don't jinx things but our weather here has been lovely. A few days of rain which is normal but overall brisk but comfortable days. A great night for Hallowe'en - kids had a great time.

Betsy, hope you are not too anxious about the upcoming surgery but certainly understand those feelings.

(((Lena))) sorry you are feeling too tired for.......  not fair. Hope you get some of that energy back

Betsy, good to hear from you! And you sound ok and in control of things. You are a strong woman and you have a positive attitude! I am thinking about you and hoping that everything goes smoothly for you next week. Please keep us posted.

Lena, I hope you are feeling a little stronger .

Amy, hope your vacation was fun and you are feeling well. Helen, good to hear from you! Geri, how are you doing?

Hugs to you all, Judy x

LENA!!!!! -- what a scary story! I am so glad you are ok. And yes, it is ironic, but still - the good news is you were not hurt, so let's just take that! I do wonder if you will be a bit sore tomorrow though.  And I was not aware you had an expiration date - any more than anybody else does. Docs can 'guestimate' but that is all it is. Many people have far exceeded the ones they were given.
Re the car  - don't be afraid to negotiate a bit on the settlement from the ins company. I've heard their offers are a least a little bit negotiable.

I am back from our trip and settling back in. I have a large piece of business that is at risk because a new person has taken responsibilty for it and from what I've heard, has his own favorite vendor and wants to move the work to him.  We have to bid to keep the work, which is a very complex and involved annual project. It is going to be a huge amount of work for us (the bid), and I have this sick feeling that the guy has already made his mind up. But of course he won't admit that. So we have to go through the motions.  I made a HUGE change when I got bc to not take work so much to heart anymore and be stressed because of it. I think (in part) that contributed to my diagnosis. And I have done very well - taken it easier, taken more time off, not let things get to me (as much). This is a hard one, and I am working hard to stay calm and not let it eat at me. We will see how it plays out. If we lose it, I will have to just work to replace that business another way. But it is bothering me.

The week away was very nice. We went on the Blue Ridge Parkway and saw a very beautiful part of our country. My DH got to enjoy some good barbeque (I don't care about it). We did some really good hikes and pushed ourselves to see some beautiful views.   We came home a day early because the snow was forecast and we didn't want to drive 6 hours through snow in the mountains to get home. Good thing we did - Saturday really was awful (which is when we would have been driving).  Went to a lavender farm on the way home. It was very pretty. Lots of uses for lavender - I bought some little bottles of the oil which you can rub on your temples in case of stress or headaches. I will give to my daughters and keep one for me. It was a really sweet little farmette.

Lena - please post again tomorrow and tell us that you are still doing ok. I am concerned......... 

Lena, what a story!!! Regardless of anything, having an accident like that is frightening. I'm glad you weren't hurt. I agree with Amy about the insurance. They always offer less so you have to negotiate to get the best possible deal. 

Amy, glad you had a good trip. I agree with you about work stress. When I had my second dx, I had been going through a lot of stress at work. I don't know if there was a connection but I will always wonder.  

Judy, so sorry to hear that things are not smooth at home. Would it be your preference to return to the U.S? Clearly moving from one country to another and then back is difficult no matter but with our other worries, it does make it more difficult. Is there anyone you can talk to like a counsellor? Of course you are always welcome to vent here - you know we will listen and emphathize but there is only so much that can be posted on this site. I think you need a hug too (((Judy)))

Hello all - I just want to write a few lines to catch up.  I had to go to my daughter's house on Sunday after the snow here in NY that downed all the power lines - I had no electricity for 3 days, but fortunately my DD did, so my dog Chyna and I bunked in with her and her boyfriend and I went to work from there.  It was fine, and I'm so glad I had that option, as many of my co-workers did not and they were in hotels or toughing it out in their homes at 48 degrees - I just couldn't do that!  So I am now back home and happy to be here!

Today was my birthday - 63!! I don't think of myself as that old, although these past almost 3 years have seemed like an eternity.  Topping that off, I am sick with a cold and feeling blah...woe is me

Now, to the important stuff - Lena I am SO glad that you were not hurt in the car accident...how scary that must have been.  I'm hoping the transfusion perks you up after the effects of the Benadryl wears off  - did they give you packed red cells?  A good boost from them and that Lavender oil could get a real workout from you and Pack Rat.

Judy - I'm sorry that things are hitting a rough patch for you at home.  When you think of that list of "most stressful things" and realize that serious illness and moving are right at the top, it's really no wonder you are experiencing difficulties.  AND you had two major moves in a relatively short period of time.  AND those moves were not to the next town - they involved different countries, different cultures, changing doctors...boy, I'm exhausted thinking of the stress!  I think Helen suggested - is there anyone you can talk to, as in professional therapist.  Taking care of our emotional health is just as (maybe more) important than our physical health.

Amy - your trip sounds like it was wonderful, and I'm glad you got home before the snow.

Helen - is retirement more real now?

Titan - have you settled into a non-wedding planning mode yet.  I imagine that consumes an awful lot of time and energy until the actual day.  I wonder if my 32 yo DD and her long-time live-in boyfriend will take that path.  I think I'm pretty good about it - I'd rather they stay the way they are if they are happy and not sure about marriage..much less traumatic than divorce (which, unfortunately I know first hand).

Betsy - ramping up the good thoughts your way - a week from today and you will be recovering and this too will be behind you.  We are all behind you, and actually I plan to virtually be in the O.R. with you...let me know what time the surgery is scheduled for - anyone want to join me?  I'm not losing my mind (?), I had read on a different thread when one of the women was going in for surgery and was scared, that they formed a virtual team to be in the OR with her, and then in recovery - according to the woman, she felt the energy of her sisters and was comforted that she was not alone.  I would have NEVER been thinking, much less writing, like this before bc, but boy has it opened my mind.

Well, I think I'm up to date - hope I didn't miss anyone.  My brother and sister-in-law from North Carolina arrived at my place a few hours ago and are staying the wekend to celebrate my middle brother's sixtieth birthday, so I'm hoping I feel well enough to enjoy their visit (this is the brother who had prostate cancer surgery in July who you all held in your thoughts.)  He looks great, for which I am so thankful.

Hi all, hope you are all having a good weekend!

Thank you so much for your support. It is amazing how even though the move to the US was stressful, I am finding this much harder. I do have less energy now than I used to have and find it harder to cope. I have thought about getting some support, but seem to spend all my time making sure the rest of the family are doing ok. I think that it may be time for me to put myself first and find myself some counselling or something similar. I got to really like our life in the US which is making the adjustment that much harder. It is a real comfort to know that you are all behind me - Thank you!

Lena, I hope you are feeling a bit better now and managing to rest to get some strength back, sending you big hugs!

Geri, Happy Birthday!!! I hope you are feeling better now and will be able to enjoy your time with the family. I am sorry that you lost power, but great that you could move in with your DD! You can count me in to be with you in the OR to hold Betsy's hand, I think it is a great idea!

Betsy, sending you hugs!

Titan and Amy, hope you are both doing ok this week.

Right, must go and have some supper now. Sending you all hugs as always and I will come by again soon.

Judy xxx

Betsy - make sure they book you a large OR - let them know you will be having a support team there with you!

Geri

Betsy!  I just wanted to know that I will be in the OR with you too! Please post again when you feel up to it..that OR will be crowded with all of us in there...hope Lena behaves herself..ha ha..

Happy Birthday Geri...63 is not old at all...

Judy..hope things are going well for you with your kids..I KNOW that you enjoy them so much but believe me the time goes so quickly then they are off to college and married...it's a big adjustment...

Lena..I've read on here that no one can give you an expiration date...you survived the accident..so you must be meant to be with us....

Saw the onc and bs this past week..didn't freak out like I used too..it is what it is...I'm good to go for now...

Chemo brain is very very real...how long did it take the rest of you since April 2009 to feel somewhat normal...I swear I'm still coming out of the fog but it is getting better.

Oh..and Amy..I read some of your posts on some of the other threads..you are seriously the common sense in some of these threads...you are brave to post sometimes...

Did I tell you that I got reprimanded for a post a few months back...I was so pissed off about some things..I don't go to those certain threads anymore

Hi Titan!

Don't worry, I'll behave. I've lost my desire since I've been wearing this f***ing bag on me. It does its job well but I hate it! Thanks to that (not wanting to actively seduce my Pack Rat anymore and actually dreading the idea of him touching me that way, all because of the f***ing bag), I no longer care if I live or die now. Having never gotten all my marbles back probably doesn't help either (the ones I lost on the 2009 chemo -- I got maybe 50-60% back; thought I was doing a little better than that until May when I saw and re-read some correspondence prior to cancer and chemo but no, looks I only got about half my marbles back and I still have to take Ritalin and Wellbutrin to barely hold it together). Everything I wanted to be alive for, once upon a time, feels like it's gone.

Please don't try to cheer me up or use this "meant for" crap because I was unlucky enough to live through that accident. Meant for by whom? Some supernatural entity I think is a crock believed in by people who cannot fully face reality on ALL fronts? Thank you but no thank you. I have had enough already.  

What post did you get reprimanded for, Titan? It's happened to me, I tend to ignore it. 

Ladies - what Judy wrote about really struck a chord with me.  When I went through chemo - I was TERRIFIED about chemobrain. My work relies on my memory and my ability to be fast on my feet with communication.  i didn't notice any symptoms or changes at the time at all.

But now (2 years or so later), I DEFINITELY am having trouble with, as Judy put it, 'word retrieval.'  I find the phrase "what's that word again?" coming out of my mouth mid-sentence, ALL THE TIME. I lose the thread of my train of thought as I'm talking and have to regroup. Sometimes when I have an anecdote or piece of information to tell my husband that is somewhat complex or involved, I just think about starting and then think "Oh that's too much trouble."  That is TOTALLY not like how i was before.

I talked to a friend who is my age (54) about this and she said she notices it too  - she has never had cancer. She said it is part of aging and she notices it is much worse later in the day, which I notice as well.  But I don't know - could it be related to my treatment, even this far out? Or just normal aging? I don't find myself forgetful about facts, appointments or things like that - just the communication piece. It is very hard for me to even admit this - it feels very scary. It's not terrible or debiliating - just definitely noticeable.  Any of your thoughts are greatly appreciated. (And I know it is not comparable to what some of you have gone through with REAL chemo brain - but I thought maybe you would have some advice or feedback for me.)

I am taking L-carnitine (liquid) to help rebuild my heart. I 'think' I can tell a difference already in terms of my endurance. Not a huge one, but noticeable while running or exerting myself hard. I'm encouraged about that. I read about it on another thread on this site - someone who had heart damage from chemo was taking it.

Lena - I don't know what to say. I know you well enough to know you don't want platitudes and have an up-front approach. Just know that I (and all of us) have really grown to love you over the years and want the best for you - whatever you determine that is.

 I am going up to NYC to see my parents this week, staying overnight Thurs/Fri.  I determined a while ago to go every 8 weeks, just to spend time with them. They are 83 and 78 and in SUPER good health, incredibly fit and active. But still - you never know.  While I am there, I am going to meet my oldest friend for lunch. We have been friends since we were 4. She lives up somewhere near the Bear Mountain Bridge - Geri, isn't that up in your neck of the woods somewhat? She is driving down to see me. I am looking forward to it.

We got new windows installed this week. The house is so warm and quiet.  I LOVE IT. Expensive, but I am hoping it will bring some energy savings (and more comfort).

Love to all.  

OK - so we are all meeting up Friday in the OR - do you have a time Betsy?

Lena - I will echo everyone else's understanding of who you are - what you DO have from us is acceptance for whatever you determine is best for you, and what you DON'T have is what might make others feel better - the "It'll be all right" syndrome.  You are very special Lena, and for me, you bring a whole new perspective on what quality of life means.  Just as we will all stand with Betsy on Friday, we will all stand with you, Lena.

Titan - good to hear from you..and yes, the Penn State situation is a real mess.

Amy and Judy - we seem to have somewhat of a consensus here, across a few age groups and time spans, that Chemo Brain does indeed exist.  I noticed some of the effects early on, but didn't pay much attention, since I was more concerned with getting through treatment.  When I first went back to work, it wasn't that noticable, because everyone was being very easy on their expectations of me.  Now that I am back to "normal" as far as my work goes, it is extremely noticable.  Like you Amy, my job relys on quick recall and fast on my feet thinking as a nurse administratoe.  The work retrival is also my biggest problem - even names that I definitely know, I can stumble over until someone else "fills in the blanks".  As I mentioned here, I just turned 63, but I cannot attribute this to my age because too many people have identified the same problem after chemo - so, are we just stuck with this..will it get better, worse?

Amy - Bear Mountain is about 20 minites from my house!  Too bad you were not heading up this way to visit your friend - we could actually meet!  Well, we will meet in a way, in the OR with Betsy on Friday morning

Helen - I guess we are the "Senior Members" here - I also wonder what happened to the plans I had - oops, I forgot, I'm not in charge!

Betsy - today are your two pre-op appointments, so let us know how everything goes. We are with you.

Geri

Looking forward to meeting everyone on Friday. Betsy, you will have lots of company and when then tell you to start counting backwards, we'll be counting with you.

Lena, as the others have said ... we love you for who you are and want to support you in whatever you wish. You are a very special woman and have had a significant impact on me.

Hope everyone is doing well. 

So, we have a time now - I know Judy will find out what 1:30 PST is for her in Isreal, and for most of the rest of us (or at least we East Coast girls), we should meet outside the OR suite at about 10:15AM to be ready to get our places around Betsy - for EST, her surgery would start at 10:30 AM EST.

Betsy - we will all be watching out for you and with all that woman power, I know you will pull through just fine.  By the way, I claim a spot by your affected LE arm, so that I can monitor that nobody does anything to cause you more problems there! You just have to remind me which arm

Oh, I just realized that part of Oregon is Pacific Time, and part is Mountain time, so Judy be careful of that when you figure out your timing - Betsy is in Portland Oregon, which is Pacific Time.

Have a good sleep tonight Betsy (did they give you anything to help you sleep?), and we will all be lined up tomorrow

Geri

Now we can synchronize our watches .... love the music choice, Betsy. With all of us there with you, everything is sure to go well as we will be reminding those docs of how important you are to all of us. We are a team.