If, Not When

Started by anonymous, May 01, 2015
27 replies for this topic
anonymous

N/A
N/A
Posted on
May 01, 2015
I'm going to knock on wood before I post this (really). That's what I do. I knock on wood. I comment that I don't believe in God, but I do believe in knocking on wood. By that, I mean that I do not believe God does stuff to us, gives us cancer or takes it away. I wasn't given this. I got this. But for some reason, knocking on wood just makes me feel better.

I do want to talk about the concept of 'if, not when.' So I'm going to knock on some wood before I type this to keep the evil eye of cancer away. Wouldn't it suck for me to say that I'm doing well, and then the cancer came back?  Knocking on wood here.

So back to 'if, not when.' When I visit my oncologist, her patter includes the concept of "when the treatment stops working." Now I understand that her experience has been that her metastatic breast cancer patients' disease eventually learns the treatment and the cancer progresses. But it wasn't until recently that I realized how her constant talk of 'when' was affecting me. It was bumming me out.

'The Land of When' has me thinking ahead to the day when the cancer will progress — how that will result in my disability, my job loss, my eventual pain-filled death. In the 'Land of When,' I am afraid to make plans, I wake up in the middle of the night in a panic, and I watch and wait in fear. I am tired of living in the 'Land of When.'

Sadly, I don't think doctors realize how much what they say affects a patient. People can live and die on a doctor's word, demeanor, approach.  My oncologist certainly does not mean to harm. Instead, I think she is trying to help. I often joke that she is like the parent who doesn't want her child to be disappointed. "Honey," I could hear her saying, "I know you really like that boy. But he might not like you, so don't get your hopes up."

But my question is: What is wrong with getting my hopes up? What is wrong with expecting the unexpected?  What if I'm that very rare patient whose cancer doesn't progress or stops progressing? What if, 10 years from now, I am still taking Kadcyla and the cancer has remained in check (knock on wood)? And what if I live those 10 years in constant fear and panic?

That would suck. 

I don't want live in the 'Land of When.' That's like living in purgatory, and I hear from the Catholics that that's not a pleasant place. I want to live in the 'Land of If' instead. A land where wonder if the cancer progresses ... if I am disabled ... if.

That's the land that most people live in. Most people don't go through the day thinking: I will be disabled, I will be in pain, I will suffer.

What can it hurt for me to live in the 'Land of If' too? I might be disappointed if the cancer progresses. I'd rather experience disappointment if the cancer progresses, than experience the disappointing expectation of death every day of my life. Even if I only live 30 more days, living in the 'Land of If' sounds much more pleasant than living in fear.

So screw the 'Land of When.' Screw the 'Land of Fear.' Screw the 'Land of Pain.' I refuse to live there anymore. I'm moving to the 'Land of If.'  Packing the truck and knocking on wood right now. If. If. If. If.

Now to tell my overprotective oncologist.
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Susan Fariss

Member
0 Replies
Posted on
May 01, 2015
I'm going to knock on wood before I post this (really). That's what I do. I knock on wood. I comment that I don't believe in God, but I do believe in knocking on wood. By that, I mean that I do not believe God does stuff to us, gives us cancer or takes it away. I wasn't given this. I got this. But for some reason, knocking on wood just makes me feel better.

I do want to talk about the concept of 'if, not when.' So I'm going to knock on some wood before I type this to keep the evil eye of cancer away. Wouldn't it suck for me to say that I'm doing well, and then the cancer came back?  Knocking on wood here.

So back to 'if, not when.' When I visit my oncologist, her patter includes the concept of "when the treatment stops working." Now I understand that her experience has been that her metastatic breast cancer patients' disease eventually learns the treatment and the cancer progresses. But it wasn't until recently that I realized how her constant talk of 'when' was affecting me. It was bumming me out.

'The Land of When' has me thinking ahead to the day when the cancer will progress — how that will result in my disability, my job loss, my eventual pain-filled death. In the 'Land of When,' I am afraid to make plans, I wake up in the middle of the night in a panic, and I watch and wait in fear. I am tired of living in the 'Land of When.'

Sadly, I don't think doctors realize how much what they say affects a patient. People can live and die on a doctor's word, demeanor, approach.  My oncologist certainly does not mean to harm. Instead, I think she is trying to help. I often joke that she is like the parent who doesn't want her child to be disappointed. "Honey," I could hear her saying, "I know you really like that boy. But he might not like you, so don't get your hopes up."

But my question is: What is wrong with getting my hopes up? What is wrong with expecting the unexpected?  What if I'm that very rare patient whose cancer doesn't progress or stops progressing? What if, 10 years from now, I am still taking Kadcyla and the cancer has remained in check (knock on wood)? And what if I live those 10 years in constant fear and panic?

That would suck. 

I don't want live in the 'Land of When.' That's like living in purgatory, and I hear from the Catholics that that's not a pleasant place. I want to live in the 'Land of If' instead. A land where wonder if the cancer progresses ... if I am disabled ... if.

That's the land that most people live in. Most people don't go through the day thinking: I will be disabled, I will be in pain, I will suffer.

What can it hurt for me to live in the 'Land of If' too? I might be disappointed if the cancer progresses. I'd rather experience disappointment if the cancer progresses, than experience the disappointing expectation of death every day of my life. Even if I only live 30 more days, living in the 'Land of If' sounds much more pleasant than living in fear.

So screw the 'Land of When.' Screw the 'Land of Fear.' Screw the 'Land of Pain.' I refuse to live there anymore. I'm moving to the 'Land of If.'  Packing the truck and knocking on wood right now. If. If. If. If.

Now to tell my overprotective oncologist.
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DMS

Member
0 Replies
Posted on
May 07, 2015
I am going on 4 1/2 years clean now from squamus cell carcinoma in my tonsils and I do not look at everyday as, am I clean or is there something lurking in me again it is hard but also it is refreshing in my thoughts to know that a new day has arrived and I am here to deal with what has been giving to me. I have panic attacks but my attacks have been that I am alone without my loving husband I lost 9 years ago to cancer - I will not be on this earth one day because something will eventually end my days here, but to make something out of what I have gone through to be positive not only for me but for others- the waiting game to see if you are a cancer free individual is something that only you can control whether you feel it is as important to you than to foresee you are having another beautiful day to wake up and to say hey I am here again to do whatever it is I need to maybe make someone smile or myself smile or laugh etc, I hope that whatever I can do to help someone else going through cancer or illness that when I do leave this world I have made someone elses place a good place. Donna
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Leigh

Member
0 Replies
Posted on
May 07, 2015
First of all Susan Farris, I understand your "what if" state of mind, and I'm not here to give you a lecture on how you should feel, but I am going to say that our Lord and Savior can, and will, take away any kind of anxiety from you if you'll just ask Him. You have to know, intellectually, that "knocking on wood" is not going to keep your cancer from coming back. You are allowing a piece of wood to determine what your cancer is going to do?? I can promise you that talking to God, who loves you in every circumstance, is the only way you're going to get any kind of peace and rest. I ask that you just give it a try for a week or two. Tell God how you feel (He already knows, but maybe He's just waiting for you to come to him). If you don't feel a sense of peace after a couple of weeks, then try it a couple of more weeks, but I can guarantee that He's going to listen to you, and eventually I pray that you'll see how much more comfort God gives you than that piece of wood.. I also want to add that our loving God is not going to send us to purgatory when we die. If you are "one of his", he's going to love you through your death all the way until we are sitting with Him on the right hand of God our Father!
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Susan Fariss

Member
0 Replies
Posted on
May 07, 2015
Donna, I agree. Live it one day a time and leave the world a better place. Leigh, spirituality always helps, and I am certainly a spiritual gal. I joke that living with metastatic breast cancer requires a black belt in spirituality. It's all about doing the footwork, and feeling that it's going to be okay no matter what. Lots of gods out there, and I respect all of them (Hindu, Buddhist, Muslim, Christian, etc). :-)
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Jbarbatti

Member
0 Replies
Posted on
May 07, 2015
Such a great perspective Susan...my husband's previous oncologist told us when his cancer recurred that he would either be bed-ridden or dead in six months. That was 21 months ago. Not only is my husband still alive and not bed-ridden, he is THRIVING! He has treatment every other week but other than chemo day, he is working full time, lifts weights, plays racquetball, golfs, travels, and lives each day to the fullest! God doesn't read statistics and no doctor should ever be so "realistic" to take away a patient's hope. Our new oncologist is realistic but also encouraging. I pray for every cancer patient to keep hanging on...there are new developments every single day in research and treatment. Each day is a gift.
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Susan Fariss

Member
0 Replies
Posted on
May 07, 2015
Jbarbatti, I totally agree with you. Nobody, not even a doctor, should take away our hope. I have a t-shirt that says "I am not a statistic." I have to keep reminding myself of that.
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Wintersnow

Member
0 Replies
Posted on
May 07, 2015
Hi Susan, I loved what you said. I am like you just waiting for the bomb to drop Again. I have Lymphoma that I have had for six years and I have been in and out of remission the whole time. I am now not in remission and they are deciding what to do depending on the results of the second Pet Scan. After the last one it showed it was back but not badly so they wanted to wait until it got worse because they are running out of treatments. I know one day will come when there will not be any more treatments left. How soon that will happen I don't know. I am living in the land of When and I want to be with you in the Land of If. Everyone tells me to stay positive. I have tried that so many times and I have be let down. So now I am neutral when I go to the doctors for my results. This way I am not disappointed when I hear that it is back and if I am in remission I think for how long? It helps me because I don't get that horrible let down feeling. I go in there saying It is what it is. After reading your post though I am going to join you in the Land of It. Hope to see you there and thanks for sharing.
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Susan Fariss

Member
0 Replies
Posted on
May 07, 2015
Wintersnow, I know what you mean. I try to stay neutral too when going to the doctor. Plus, I'm constantly looking at Clinicaltrials.gov to find trials I can sign on to. Maybe I can move from clinical trial to clinical trial to save my life. Good luck with your results. I'll be knocking on wood, praying, or whatever else you need.
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Leigh

Member
0 Replies
Posted on
May 07, 2015
Hey Susan, I can't even imagine having metastatic breast cancer. I'm a 7 year survivor, and I still get nervous every 6 months when I go in for my checkups, blood work, and tumor markers. I imagine you are a strong person, and I can't tell you to "stay positive", because if it were me I'm not sure I would! Cancer is scary anytime, but for me the scariest was thinking I'd be leaving my 5 and 10 yr old without a mother. I depended on the ONLY God to get me through cancer, and through many people praying for me, He did. There is only one true God, and that is our Heavenly Father. I pray that one day you, and so many others out there, will know Him. I'm not one to cause controversy, but it saddens, and scares, me when people don't know what a loving and caring God we have.
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DeniseBing

Member
0 Replies
Posted on
May 07, 2015
I signed up for this just so I could say to DMS and Leigh that your responses are both uncalled for and quite rude. It would have been better of you would not have responded at all.
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