Opened my mail...

[SoCalGal]

Blue cross just turned down my herceptin. My onc already told me that she would call and straighten things out - "not to worry". I hate that my insurance company has the right to issue a cold and insensitive letter that deems my treatment "experimental" not to mention that they are wrong on their interpretation of the latest PET/ct. It's a waste of my docs time and a waste of paper work and an obvious strategy on the part of the insurance companies. BUT - It makes me furious. And so depressed that I have to again fill out a zillion forms to fight them. My doc must feel confident that she's right since she already gave me the treatment they turned down.

UNRELATED to that is the worst for me (and anyone) PAIN - my neck/arm/shoulder pain returned. It's been almost one year since my neck epidural pain block and my neck has been fine. It's my right side - and I'm right handed - need I say more? I swear I never feel it's unfair with having cancer - to me it is what it is and I deal with it. But ANYTHING else on top of that tips the cart and it is UNFAIR and I cannot handle it! No CAN DO.

Ironic that the cancer is stable but I am feeling shakier than ever. I'm clouded by the fear that this nerve pain will never end. And exhaustion from my triple drip and 3 nights of bad sleep. There are no real meds for this - but I'm watching the clock and will call the pain mgmt. guy again and beg for an early appointment. I feel like I've been sick more than well this vacation when my kids are here and I'd like to be able to be cooking for them and filling our house with the comfort foods they would probably like. Instead I am resting - waiting - always trying to feel better or figure out what to do next to feel better so tomorrow is a better day but so far it's not. If I spend all my time resting and waiting then what good is my time?

I am so sick and tired of this fight. Down to my bones tired. I'm not going to quit but I would not be unhappy to leave in my sleep - it sounds like a luxury vacation of peace.

thanks for listening. I just can't keep it inside another moment.

[Believe51]

Dearest Flori, your post is what I have been hearing from Ed for a long time. I am so sorry that you are feeling so terrible. I cannot grasp the words I need to say today since I have a 'corker' of a headache. Just wanted to reach out and send love and empathy to you. It pains me to hear you got kicked again.

"If I spend all my time resting and waiting then what good is my time?" Ed has asked me the same exact question and we all know the answer. This too shall pass, be patient with your body and get to the pain management clinic asap. The patch Ed is using in a Godsend and allows the pain to dull enough so he can rest. You will find your magic potion there and I pray that it will be soon. I have not spent much time with him since the pain he is in, I miss him so but I know we too are off to better days very soon. Believe it or not, 80% of our Christmas gifts still lay under the tree. Our gifts will be late but the big man will be delivering then, even if it is the end of January.

Hang tough My Sweetness, help for pain is on the way. Your family may be missing you but not for long. When you are past this, the comfort foods you make and share will be all the better. Take some time after you are up to par and bake away. Although missing you, your family knows you are right there.

I love you. Sending you a gentle hug and whispering in your ear that I am so glad if you had to vent that it was with us. After all, who can understand better?>>Believe51

[Debbie L.]

Flori, just wanted you to know that I hear you. Loud and clear, nodding head, sad for your hard times, and sending good thoughts.

Your kids don't care about goodies, they care about you and your presence. But you already know that, and I do understand, at least a little bit, what you're saying.

Insurance hassles - arrggg. It seems that more and more, knee-jerk denials are their first response to everything. Kudos to your onc for being ready to take over this worry for you.

Pain is so draining. Do you have meds that you can take to tide you over until you see the pain specialist? It sounds like you got amazing results from the epidural last time. May it be so, again.

"What good is time spent resting and waiting?"

Oh, great question. My kind of question. I don't know the answer, especially not for myself, but I do know that many people have found the answer, by learning to believe that what is important and essential about them is not what they do or what roles they fill in life. It's about who they are - their soul or spirit or essence - so many words to describe that deeper part of us that is not how many cookies we bake (or how clean we keep our house or how good we do our job), but how we connect with those that we bake the cookies for. It is that feeling (love, connection, trust?) that needs no words, and it is the important part of who we are.

The people that I know (and have known) who are able to pull this off do not have it perfect all the time. But when they do have it, it is beautiful. There is such peace and love - for them and for their loved ones.

I had to read Ram Dass's "Still Here" several times before I began to get even a glimpse of understanding about what he was saying about dependence. Being dependent is not exactly the same as not being able to do what we want - not exactly the same as "resting and waiting", but his discussion of dependence touches on the same issues. He wrote it after a debilitating stroke. I suggest it to everyone who rails against downtime, from any cause. Reading his words always helps me - I can feel my body relax, my breathing soften, and sometimes I find myself smiling for no reason.

Love,
Debbie Laxague
PS: I do not know how this is going to look. There were a bunch of color options when I explored my "new" (not exactly) username and I went wild with green, yellow and purple. But typing this now, I don't see that - so maybe nothing will happen.

[Believe51]

Deb, your post and pm has brought me to tears, all good ones. Thank you so much for your reply to Flori's post. It hit home for me and has brought inspiration to me as I know it will for Sweet Flori. Today I am leaving early since we are having a large snowstorm. Upon my return home I always light my candles for family who needs prayers and then another one for someone special who touched my daily life. You are that lady today. Thanks for the inspiring post, I did not know how much I really needed that but I surely know how much Flori does! So glad you are part of the family.>>Believe51

[Lani]

I am sure your oncologist will be able to challenge this successfully

The insurance company computer probably "spit" out your name as someone on herceptin for more than a year, not looking to see if you are Stage IV or not...or more sinisterly..they try periodically to scare oncologists to see which will respond and just stop the herceptin, saving them money.

Now that you have "erupted" I am sure you will gather your considerable forces and tell them"No way Jose'!"

It is funny that the most potent way to ruin a human being's mood is not by giving them bad news about their prognosis, but rather by nudging them into "victimhood".

Kidnappers know this--that is why they tell their victims "everybody has forgotten about you, no one is looking for you, noone cares"

If cancer can't get you down, don't let "victimhood" Don't even go there!

And forget about "fairness"--it is a wonderful concept, but in the real world
how often are things "fair"?

Insurance companies figure if they can scare your doctor and/or get you depressed they might push your doctor into changing your treatment or make you suicidal and they stand a chance to save some money. They are betting on a cruel scenario and you and your doctor won't fall for it!!!

Take a Jacuzzi or a swim, put on some inspiring music, take some deep breaths and reemerge out as the stubborn feisty woman that you have always appeared to be from your posts

A New Year's peptalk, from one who rarely gives them!

[Joe]

Flori,

Contact these people. They are really great.

Disability Rights Legal Center

You may also wish to contact Genentech

Regards
Joe

[Mary Jo]

Dear Flori,

I have nothing as eloquant as the rest to say....just wanted to say, I, too, hear you loud and clear and although I can't understand, I can imagine. I'm so sorry this "ordeal" is laying in your lap....in so many forms. Truly sorry I am. If I could take some of your "pain" know I would.

I know my words probably sound trite...and I apologize for that. I guess the only true expression of my love I can give you is to say....I really am sorry.....but know in my heart of hearts you shall rise above this as well! Tomorrow is another day.

Love and Peace I pray for you,

Mary Jo

[freyja]

Flori,
I hear you, too. It sucks that our suffering from cancer has to be compounded by all the unfair weaknesses in our society and particularly health care system. I know you're strong. I can sense it from your posts, and your photos. The holidays have been hard for me, too because while trying to make cookies for Santa with my boy, I got really sick and had to lay down and get my husband to finish them.
I send healing thoughts to you, and everyone here, and will share any energy with you I can find. Keep faith and someday this will be a memory and you'll be even stronger than ever because you got through it. There's always a way, but the only way out is through.
You've heard this all before...but it's true, isn't it? Just want you to know I understand. I wish I didn't but I do.
Celeste

[hutchibk]

I can't add to the current AMAZING posts except to say - Lots of love to you, girl. It's a rocky boat we are in, and sometimes it sways more violently than other times.

[SoCalGal]

To all who replied...thank you so very much for your words and prayers. I have just printed out all replies to this thread and am going to paste them up to be reminded. I am actually feeling better - emotionally. Thank you so very very much.



PS:Aside to Debbie - thanks - you really gave me something to think about and to try to better incorporate into my life. I will find the book. And Lani - thanks because I know you don't usually "go there" but that really makes your words even stronger - You are right about both the insurance companies and me
Celeste thanks as well for the reminder - my daughter lives in Eugene - she's a "duck"

[caya]

Dearest Flori,

I hope today, the first day of 2009, finds you in feeling better on all levels - physically, emotionally, and spiritually. Please know that your voice on this board is very valued, and also know that we understand that there are moments when we all feel like this.
I cannot begin to tell you how in awe I am of the stage IVers on this site - you are the bravest, most gracious people I have ever "known". Please realize that I pray for you often, and hope that your struggles will vanish and that 2009 will be the year of the cure.
To you dear Flori, I say Baruch Hashem (BH) - Blessed is the Lord - keep the faith, you are allowed to feel down, kvetch here whenever you feel like it -
We will be here to give you strength to go onwards...

all the best
caya

[Gerri]

Dear Flori,

I will not presume to know what you are feeling since I have only had to go to battle once with this horrid disease. However, I could feel the pain, sadness and desperation emanate from your words. I think Debbie did a wonderful job of summing up exactly what I was thinking. Your essence, as she so profoundly put it, is what makes you such a great person. YOU are what your children come home for, not what you can do for them. The life lesson you are teaching them with your indomitable spirit will take them far and serve them well.

I just read a book, Deep Survival, Who Lives, Who Dies and Why, by Laurence Gonzales. This is probably more of a “guy” book because most of what he studied was survival dealing with Mother Nature – mountain climbing accidents, survival at sea, etc. However, there was a common thread that ran through the book – A survivor is someone who takes his/her present surroundings and makes a plan based on the current situation and options. While reading this book my thoughts were always turning to the members of this board who must deal with survival on a daily basis. You are one of those survivors. You take “what is”, look at your options, and then you move forward. Sometimes there are set-backs, and you lose a little ground, but when you are able, you pull yourself together and move forward with renewed strength and determination.

I hope you are able to get your pain under control and start to feel better. You are an amazing woman.

Love to you,

[Mary Anne in TX]

Hi Dear Sweet Flori! Sometimes pain steals our courage and resolve, but never our heart and soul! Yours are most certainly intact, mighty warrior! You've raised up so many of us off our knees so many times and I know that you will do so many more times! Much love to you mighty one! ma

[Joan M]

Flori,

I'm praying that the new year brings you better health and peace of mind.

Our main battle is tough both physically and emotionally without the various bumps from the likes of oour insurance companies or perhaps our jobs.

Your oncologist should probably be able to straighten out the problem, but it's unfortunate to have to be put through the worry.

Hang tight. Better times are around the corner.

Joan

[sarah]

Flori,
So sorry you're going through this but I'm sure your doctor will get it straight. Meanwhile, take some deep breathes, lie with your eyes closed not thinking about anything and then go and give each of your family and friends a big hug - you'll feel better.
BIG hug and love
sarah

[Believe51]

Thinking of you and sending more love. Happy New Year.>>Believe51

[vickie h]

Flori, I know how you feel and it is almost unbearable at times. I, too, had several epidurals and was in pain management for over a year. They even resorted to giving me a bottle of morphine to take home. I spent weeks sleeping upright in a recliner because the pain was so horrific. There were days that faded into nights that blurred back into days. I felt that this was to be the rest of my life and I began to look at that morphine bottle as my possible way out. It was the bleakest time I can remember through this journey and I felt no one really understood...how could they? Just as I was about to give up, A friend handed me a copy of "When Thing s Fall Apart" and it changed my life. The pain slowly started to subside (this was 3 1/2 years ago) and I began to walk on the beach, collecting sea shells and taking hikes through the sand dunes. I threw the morphine away, and my hopelessness away with it. I pray that the pain is resolved and you have some comfort. I know how that pain can make life miserable, everything becomes skewed and resting all the time makes life questionable. I am thinking of you and sending you much empathy. This pain will pass and you will feel energy and strength again. Don't give up, my friend, you have so many who love you and you are never alone. I am very glad that you shared this with all of us. You need to express that pain and ask for help and understanding and compassion. Please let us know how you are doing and I would be more than happy to drive down and help you in any way I can. Much love to you today, Vickie

[Sheila]

Flori
Sorry to hear that the insurance is being a pain in the a**....sometimes I think they "hope" we will just give up and they won't be spending the money! You just need to let them know what fighters us survivors are....it is just sad that they really know how to kick us and sit back and watch for our reaction. We have so many battles with this disease......one at a time, breathe, one at a time!

[Soccermom]

Dear Flori,
just want you to know I am sending gentle ,loving thoughts to you...and this as well...

"El na r’fa na la." "O God, pray heal her!

Marcia

[schoolteacher]

Flori,

I hope you are feeling better this morning.

Amelia