Message from a coward

Delaney · 08-24-2010, 12:02 PM

Got ct scan results today. Lung areas show decrease. Skin mets and lymph/chest wall mets increasing. So am going back on Herceptin along with the Xeloda/Tyverb that I'm already on. Have been told that this combination has been known to work for my situation. Anyone tried this? Had to go to doctor for painkillers last week cos of pain in rib, especially when bending, got Naprosyn for this. I immediately thought bone mets so we are 'watching' it and will have bone scan if still have pain in 2 weeks. Had bone scan end of June and it didnt show any trouble there. Getting scan results is SO stressful and this will be how it is from now on. Have been reading posts from stage iv people who have been dealing with it for years (the lucky ones), would love to know if theres a formula out there to transform me from the big coward that I am, had to take anti nausea pills today cos I was so nervous of the results.

michka · 08-24-2010, 12:49 PM

You are NOT a coward! You are going through a difficult period again and it is normal to be stressed and afraid until you get the treatment right. The good news is the lungs. I hope some stage IV will jump in and share their experience. Keep strong but if you want to express your fears, you can do so. We are also here for that. But you are not a coward. Hugs. Michka

tricia keegan · 08-24-2010, 01:58 PM

Helen, you are NOT a coward!!! Many of the stage iv ladies here possibly have had longer to deal and get used to their diagnosis but still have their down times too.

I'm sure they'll be along to give you advice and their own tips that helped, I found Andi B's threads so inspirational and encouraging, not just for a stage iv but helped me when first diagnosed. I have'nt seen her post in a while but if you have time search for some as they may help you too

In the meanwhile its great news on the lung mets and keeping everything crossed this new regime will help with the skin mets too. Don't ever feel you're a coward, this is a tough thing to get through and we all have to find our own way in dealing with it and getting through each day without cracking up lol...we're here for you to vent anytime!

P.S Just found some here http://her2support.org/vbulletin/sea...earchid=608189

Jean · 08-24-2010, 06:05 PM

No such thing as a coward when we face this disease.
It is plain and simple - women and men who are dx. with bc - realize how wonderful life is and all the silly non important issues that most people make so much drama out of - is a total waste of time.

The stage IV members are very wise and have lots to share with you. The rest of us are all here to support you.

Please keep us updated.
Best Wishes being sent.
Jean

vlcarr · 08-24-2010, 06:35 PM

I've not met a coward on this board and you are not going to be the first--none of us are cowards. It just sucks what we have to go through and we're all entitled to feel what we feel, without being judged--that's the great thing about this group!

Lori R · 08-24-2010, 06:48 PM

Delaney,
As the other wise women before me have said....a coward??? Are you kidding??? The tests and awaiting scan results has to be THE most stressful situation anyone could ever face. The fact that you are not in a padded room says a lot about your strength of character.

Just so you know...you are not alone in terms of high anxiety. When I received my recent scan results, I had an intuition they were bad and started to cry in the Drs office the moment she opened the door. My husband and Dr. looked at me like I was crazy.

But....we do exactly what you are doing. We regroup. The most defeating thought process you can entertain is the various twists and turns our future may (or may not) take. For now...you have an option that is encouraging. That is enough for today. If that option should fail, there will be another one. (Abraxane, Ixempra, Gemzar...I am sure there are others I am not aware of)

Also.....to divert those deep dark clouds...FORCE yourself...I know it is not easy...to be appreciative. What do you appreciate about today? Is your Dr. kind? Do you have a family member that's been supportive. I think it is someone on this board that said you can't be fearful and appreciative at the same time. When the fear creeps in..repeat process.

Please keep us posted and do not hesitate to return with your fears. Leave them on this site and then go and enjoy your day.

Keep the faith....Lori

ElaineM · 08-24-2010, 09:31 PM

You are definitely not a coward !!!!!!!!!! Do not ever think of yourself that way. You have great strength to be able to fight breast cancer. You are definitely a champion!!
Now I wanted to share something with you. Below is a link to a site with postings from people with breast cancer skin mets. You are not alone. The postings are about what other people are doing about skin mets.
The information provided might help you.
http://www.ibcsupport.org/search.php?q=skin+mets&s=s
You might also want to consider seeing a good dermatologist who is willing to work with your oncologist. A good dermatologist might be able to suggest treatments for skin mets. Dermatologists treat various kinds of skin cancers. Some dermatolotists can treat breast cancer skin mets.
Take good care of yourself.

Jackie07 · 08-25-2010, 12:36 AM

More than 30 years ago, I helped a vocational rehabilitation consultant from California translate a collection of his speeches into Chinese. He was a Jesuit missionary and caught polio in Taiwan during his training. He went back to the states and got his polio treated, fitted with an electric wheelchair and earned a master's degree before going back to Taiwan again as a consultant. He started a foundation with his salary and helped numerous disabled people in Taiwan.

He mentioned about 'courage' in one of his speeches. He said that 'courage' derives from the things/persons we love. Nobody can go to the store and ask for '3 lbs of courage'. But if you have a goal and a desire, you will have courage.

The fact that you have evaluated your situation and shared your thoughts with everyone here shows that you are a brave, 'smart cookie', definitely not a coward!

Delaney · 08-25-2010, 09:33 AM

Thank you all, each and everyone of you, SO MUCH for your wonderful messages. Tricia and Elaine, I will look up the info on the skin mets (they are SOOOO disgusting, makes me feel like a leper, hopefully I will get rid of them). I would really agree that cancer makes a person much more appreciative and I am really able to let the little insignificant things just go now, dont worry about the small stuff anymore. I woke up today and thought to myself that I did get some good news yesterday and no really awful news so I will enjoy life now and appreciate that really I'm ok and let the next scan take care of itself. I am so grateful for this website, thank you all so much for your kindness and humanity and I hope to be able to be of help if I can also. Yes, we are courageous, we're all facing the monster head on. "You cannot be fearful and appreciative at the same time" - love that, wont forget it! HUGS to all.xxxxxxxxxx

chrisy · 08-25-2010, 01:57 PM

Delaney - I saw the title of your post and smiled, thinking "I don't remember posting that!". You are most definitely not a coward - and it seems we are unanimous in that.

You are facing down cancer - that's not for the faint of heart but you are doing it! I love Lori's comments, so true and it is just one step at a time.

I'd love to say it gets easier, that there will be a day when you do not have any anxiety about scans. But I haven't had that experience yet. Of course it is stressful and nobody is immune from it but I think you will find ways to live with it.

Some mind games I play that sometimes help:
1. Remember, it is just information. Knowledge is power and although we always hope for great news, even not so good news gives us information necessary to make adjustments (as you are doing now)
2. Don't think about it until it's time. Ha ha ha. No really, I used to set my mental "now you can stress about it" clock for the moment I walked into the doctors office for results. And it worked surprisingly well (until it backfired one time when I had the appt date wrong, showed up a day early and had a COMPLETE meltdown!) So nothing is foolproof.
3. No news is no news. If you don't get a call when you expect, it could mean the radiologist is backed up. Or the nurse forgot to call or went home sick, or any number of things. My mind instinctively goes to "they're not calling because the results are bad" - but that is not necessarily what's going on. Call if you think you should have results.

Delaney, you seem a very wise person - to recognize that fear and appreciation can't exist in the same place. The fear stuff comes and finds you. Sometimes you have to look harder for the "appreciate" things.

Hang in there, one step at a time and don't forget to breathe.
Chris

Sherryg683 · 08-27-2010, 09:39 PM

The first two years of my treatment, I had scans done every 3 months. I have since had scans done every 6 months. Every time I go in for results I feel like I want to puke. One time I was literally so afraid that I told my husband that he could just go for me and get the results, I wasn't going. He finally dragged me down there. I haven't found that it gets that much easier. What I have found though is that I have learned not to stress over it too much until a day or so before the results. The first couple of years, I would start stressing about a month or so before scan time and be really worked up. I then decided that I was wasting so much valuable time worry and it wasn't doing any good at all. So now I just try to enjoy every day I get and try to put scans and results in the back of my mind until the day of...sherryg

Delaney · 08-28-2010, 09:58 AM

Thanks Chris and Sherry.
Chris - I see the TDMI got you to NED. Must ask if thats available in Ireland next time I see my Oncologist. He mentioned at least five more drugs that he has in mind for me if needs be, didnt recognise them, all long latin sounding names.
Sherry - congratulations on your 4.5 yrs NED and wishing you years and years and years.