Cancer is back...I just knew it. - Page 4

Laurieanne · 09-24-2009, 07:18 AM

Hello Chelee,
Just want you to know I am praying for you at this difficult time. You we're the first to respond to me when I was diagnosed last year. You helped me so much. I wish I could do more.
Love, Laurie

freyja · 09-24-2009, 08:41 AM

Chelee,
I've been thinking about you constantly and the last couple days and now finally have time to sit and write. We are all shocked and angry and scared right along with you. We are also strong, and determined and optimistic with you, too. You are not alone. You're also not the only one who had issues with her husband during treatment. I know exactly what you're talking about. My husband seemed to turn into a zombie when I was diagnosed. He was completely absent to me, and I had to deal with everything myself, or call my mom in to come stay with me during the hardest parts. He also had anger issues and I was shocked that he could get so angry with me for so many tiny little things that weren't even my fault, while I was going through so much. It doesn't make any sense. At times I thought my marriage was doomed and if I had been in the position to be ABLE to leave I probably would have. Now that I'm not in treatment any more he has come out of his fog and has admitted that he completely couldn't deal with it and was useless through the process, so hopefully he learned something about himself and can react much better in future crisis...we shall see. Men are not actually made of steel, are they?

The really important thing is communication. If he's not doing what you need, tell him. He really can't know what you want him to do unless you communicate clearly, and the other most important thing is that you both agree to try to not take anything personally. Emotions are amplified now, and that makes communication harder because feelings are easily hurt. You're joining forces against a common enemy now, so being angry at each other only weakens our defenses.

Forget one day at a time, just take things one moment at a time. Keep a notebook and calendar with you at all times so you can write down EVERYTHING so you won't forget, and a tote bag or backpack with all your medical records and forms you need, snacks and a book or craft project. That way you don't have to scramble every time you're headed to another appointment, and you'll have something comforting with you when you need it.

If your husband doesn't have the energy to be there for you sometimes, call your family and friends. They don't know what to do either so they need you to tell them.

Take a lot of very deep slow breaths. Slooooow dooooown. It's hard to think clearly if you're thinking about everything at once. Start at the top of your list and tackle one thing at a time.

It all seems simple but those are the things that have helped me the most, and it's easy to forget simple things when faced with so much complicated things.

My love to you Chelee. Your instincts are strong. Trust yourself and you'll do fine. You're doing everything right. Go ahead, cry...I'll do it to. Celeste

Linda · 09-24-2009, 06:24 PM

Chelee:
I'm so so sorry to hear about your recurrence.
I wanted to pass on the name of an LA bc expert that I consulted when I was dx. I know she's a heavy hitter, although I don't know if she's still at this practice, since I saw her 4 years ago. But you can google her and see where she is now and if she's someone you might want to consult.
Dr. Silvana Martino
(as of '05) The Angeles Clinic
(310) 582 7900
I wish you the best
Linda

charlotte · 09-24-2009, 10:03 PM

I want you to know there is a great deal of folks praying for you (me too)We are here for you.. I don't post a lot, because I hardly ever get any good news to share..We care about you and I hope you can get some rest, before you start fighting this #******
Cancer. let me know if I can help you in any way..You are a strong person... take care, please keep us updated as to your progress.. Charlotte

vickie h · 09-25-2009, 07:54 PM

Oh Chelee, @#$%^&%$#! I am so sorry to hear this latest news. I just found out as I have been away and dealing with my own stuff, but you are always here in my heart and prayers. Try to breathe deeply and know we all love you. Dr. Slamon is 2 blocks away from my Oncologist, on Santa Monica Blvd. in Santa Monica. Dr. Kimberly Hervitz is seeing his patients and he oversees all of the cases, so please call them and see if you can see Kimberly. You'll be in great hands there...I just know it. In the meantime, my sweet sister, I love you and know you're going to get the right treatment and soon.
Love and Hugs,
Vickie

loveher · 09-26-2009, 06:11 PM

stay strong Chelee!!! you will get through this storm.
-Sue

sarah · 09-27-2009, 07:16 AM

how you doing Cheleee???

juanita · 09-27-2009, 07:49 AM

sending hugs and prayers your way!!!!

schoolteacher · 09-27-2009, 08:57 AM

Chelee,

You are in my thoughts and prayers.

Amelia

Chelee · 09-27-2009, 02:03 PM

Sarah you ask how I'm doing? I am just feeling so overwhelmed and have so many things going thur my mind of what I need to do...and how I'm going to get it done. Plus all the questions my onc won't answer. I know I won't feel any better at all till I talk to a "couple" other onc. One is Dr. Mortimer that Joe referred me too...hopefully they will get that set-up this week! They are already past the 72 hrs they had to get it done. I called the case manager at my place & her excuse for why it's not set-up already is because I saw a different onc at City of Hope within the last 18 months so that onc has to release me to see Dr. Mortimer. Well that shold NOT take this long...I'm in a hurry. (What about laws...it said 72 hrs...period!)

All these delays and just more added stress. Then I am a bit nervous about starting Herceptin tomorrow "without" a port...but yet I want to get started now. They keep saying Herceptin one time without a port won't damage my veins like other chemo. (I hope that's true...my veins are shot as is.) I get my port Tues., the day after Herceptin. Seems they did this backwards.

I did go on Saturday & had my ECHO...couldn't get a read on the tech to see if my heart is in good shape? Last time I did Herceptin my EF was always high...70% & I believe 65% was the lowest it went...so I hope its still fine. If I had my game plan I'd feel better I think? Trying to figure out which onc's to get opinions from...& being realisitic about how far I can drive back and forth for chemo is just stressing me out. So many things to think about AND do. I want to get at least a "Consult" with Dr. Slamon if at all possible..that would really give me some peace of mind. I've had such a great response from so many of you on the board and via PM with good idea's and referrals to great oncologist's to see. I'm over whelmed...in a good way. But yet it's hard to pick which ones to go too. I still have to call my HMO directly because the case manager at the hospital told me flat out I could NOT have more then one 2nd opinion. I find that HARD to believe. They just don't want me doing that. I'm just at my wits end about now. This entire last wk has been a nightmare to me. My appetite has been gone & I'm dropped weight & having trouble sleeping since this all started.

Until I get a 2nd opinion I won't know anything and I think thats whats causing me the most anxiety. Navelbine & Herceptin was mentioned...along with Taxotere, Tykerb or Avastin to add to the Herceptin (alone) of course. Or a clinical trial. I first need to know if I really have chest wall recurrance...my PET/CT doesn't sound like it to me...it's my seroma that's been there forever! But right axilla does suggest neoplasms.

I want to know what they can do about that since I can't have rads? This waiting for 2nd opinions is going to kill me first. I'm just rambling like always...not to stressed out. Sorry!

Chelee

'lizbeth · 09-27-2009, 02:17 PM

Chelee, I know you are understandably upset. But Herceptin is a targeted therapy not a chemotherapy. It won't damage your veins like chemo does.

You'll be okay with one treatment without a port, so don't worry about that one.

I hope that you get good news with your heart's LVEF. You deserve some good news and I'll be praying that you receive it.

We are here for you,

'lizbeth

harrie · 09-27-2009, 06:16 PM

Chelee, I am so sorry to hear of your news.
Ok second opinions. I was going to get a second opinion from a Dr. David Chan. I believe he is in Redondo Beach. I really liked the book that he wrote. I ended up not seeing him and was referred to Dr. Pegram for the opinion that I wanted regarding the HER2. If it were not for that particular situation, I would have consulted Dr. Chan. I was very grateful to Dr. Chan's office for going out of their way to refer me to Dr. Pegram. They didn't have to do that and they never me me personally.
I go to Breastlink down in Manhattan Beach and there is a Dr. Waisman who is my onco. He is amazing. Not only is he very smart, but extremely compassionate and on the cutting edge. Let me know if you would like more info.
Dr. W is so on top of everything with me, if I have ANY concerns or questions, he is always available via email, any day of the week and he gets back with me with hardly any delay at all, dispite his busy itinerary. Unbelievable.
I have had my share of experiences with bc and Dr. W is my guardian angel.
Email me if you want more info.
Take care.

WolverineFan · 09-27-2009, 06:35 PM

Chelee,

I can't imagine how frustrating it is having to wait, as that is always the hardest part for me, but you can do this. I agree that you will feel somewhat better once you have a game plan and can start on that. Until then, please know you have a big crowd cheering you on every step of the way, and praying for a complete recovery for you!! Take care and good luck tomorrow.

sarah · 09-28-2009, 03:24 AM

glad to hear from you Chelee. Good that you're getting Herceptin right away. sounds like the board has given you good references.
If I were you, I'd go with Harriecanarie's advice. you need a very good doctor and a compassionate one.
once you start getting the chemo, you're feel better.
the waiting and deciding is the most worrying period.
hugs and love
sarah

DianneS · 09-29-2009, 09:24 PM

Chelee,

Just wanted to chime in to say I had all my herceptin tx's with no port. They use a tiny pediatric needle - very painless and does not leave any marks.

Thinking of you & wishing you the best treatment ASAP!
Dianne

WolverineFan · 09-30-2009, 12:27 PM

Chelee....any updates? You are in my thoughts and prayers.

Hayley

chrisy · 10-01-2009, 12:03 PM

Chelee,

Sorry to hear your news...I know it's scary as you gather information there's just too many questions swirling around right now. Chelee you are a fighter and although I know it feels like you have to hit it all with guns blazing RIGHT NOW...but you do have time to get the best information, go for that 2nd or 3rd opinion, and come up with your plan.

The big difference now is that you are planning for a marathon, not a sprint. What has not changed is that you need to remember to breathe.

You're not alone.

Trish · 09-25-2010, 07:26 AM

Oh Chelee I am so sorry you are feeling so bad. I am glad though that so many of us on this web site are right behind you. I am confused though. I thought Joe , the Webmaster was Joe Christine's husband who recently died. Was I wrong?
I am hoping that you will soon get better news.
Trish

KDR · 09-25-2010, 09:46 AM

Sorry to read your upsetting news, Chelee. Stay strong, there are so many new and good treatments available now. I think UCLA is one of the best places, too. Warm thoughts your way,
your new friend, Karen

Lien · 09-25-2010, 11:11 AM

Rats, Chelee! That SUCKS! You must be so scared and confused. However, you managed to get a good plan of action going straight away. That's really impressive.
Get those second, third opinions and decide on what feels good to you. Does your present onc work with you on that basis? I hope so! Check out dr. Slamon, as he's given you good advice in the past.

About your husband: I bet he is as scared and confused and upset as you are. He just went into denial, probably. Sometimes it's harder to handle this kind of news for people around you than you would expect. I'm not saying he was right, just that he obviously loves you very, very much, or he wouldn't be this upset.

I hope he realizes that he let you down and apologizes. My husband never went with me for the appointments. I couldn't deal with his fear.
Just once, when I went for a checkup, I was standing by the side of my car and said: I'm so scared! I never say things like that, so he asked: do you want me to come along? I really have an important appointment and three people are waiting for me. I said: cancell the appointment. He did and came along and never said a single word. He needed me to spell it out for him, or he would never have come with me.

Hugs

Jacqueline