Monday of this week I had chemo. Here comes the poison, Carboplatin and Doxil. On Wednesday, a Neulasta shot to pump up the bone marrow and replenish the white blood cells knocked down by the chemo.
Thursday and Friday? Nightmarish pain all over, the headache from hell, literally can't keep my eyes open, can barely move about, but can't sleep, stomach pain, nausea. I've probably left something out, but that's enough to get the point across.
But today the fog is lifting, and I can remember that all is not bad, when you are surrounded by love.
The kind of love from a husband who:
- tells you you're beautiful when you know you're not
- reassures you that this too will pass
- cries in the night when he thinks you are sleeping
- goes with you to all your chemo sessions and doctor appointments
- remembers to ask all the right questions when my brain can't
- reaches over and holds your hand in the middle of the night.
- learned how to grocery shop and cook so I don't have to
The kind of love from a daughter who:
- calls to see how I am doing
- makes me laugh because she knows I need to
- allows me to cry, because she knows I need to
- is smart enough to realize how much I hold back so as not to worry her
- continues to support me
- shares her life and her worries with me, because she knows it is good for me to still feel needed.
The kind of love from family and friends who:
- call me regularly
- send me cards
- don't sugar coat my illness
- remind me often how much they care.
My husband's side of the family recently held their annual golf tournament, the one we've had to miss the last two years. All of the winning female event prizes were dedicated to me; yes, so touching! I must admit tho, that I thought that meant I would actually get all the prizes in the mail. I'm still waiting, people!!!!!!
Lesson learned? Through all this, there are still gifts. It's helpful, so helpful, to pause and remember them. Thank you, all of you.
Saturday, August 18, 2012
Tuesday, August 14, 2012
Just the Right Words at Just the Right Time,.
I cannot say it any better than this.
You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.
You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. *When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand. * Great advice, but extremely difficult for me.
The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.
The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive. The last three sentences are questionable, when you have been told your disease is incurable, still, it has it's place in the battle.*
Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.
You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Most insurance policies don't pay for therapy. Shame on them. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. This is most difficult for me to do. Let it out for yourself. *You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever. This is one of my goals. *
You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking. *
*Red face type are my own comments.
*Bold face type are things I found particularly meaningful, or important.
Freelance Writer and
Founder of C2Bseen
by JEFF TOMCZEK
The Things I Wish I Were Told When I Was
Diagnosed With Cancer
Your relationships are about to change. All of them. Some will get stronger. They will probably not be
with the people you would expect. The people you want to handle this well might
not be able to for a variety of reasons. Some of the reasons will be selfish.
Some of them will be entirely innocent and circumstantial. All of them will be
forgivable because no one plans for cancer. Carrying bitterness or anger won't
help your recovery. Fighting for anyone to stick with you won't cure you. Those
who can, will.You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.
You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. *When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand. * Great advice, but extremely difficult for me.
The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.
The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive. The last three sentences are questionable, when you have been told your disease is incurable, still, it has it's place in the battle.*
Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.
You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Most insurance policies don't pay for therapy. Shame on them. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. This is most difficult for me to do. Let it out for yourself. *You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever. This is one of my goals. *
You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking. *
*Red face type are my own comments.
*Bold face type are things I found particularly meaningful, or important.
Thursday, August 9, 2012
The Shadow
Well, Monday is my oncologist visit where I will find out the results of my last blood draw, and hopefully get my next chemo of carbo/lipodox.
So, the inner voice begins: what will the numbers show, what if they're climbing, are my blood counts and platelets normal enough to receive the chemo, what if this treatment isn't working, blah, blah, blah. This is what living in the shadow of a cancer diagnosis is like. It's always there, following me. Sometimes I'm really good at ignoring it, and at times like this it's like he's constantly reminding me: "I'm still here; I'm still here."
What do I do about this? Keep busy, try to push the negative thoughts as far to the back of my mind as possible, visit with a friend or family member, and sometimes, a little retail shopping therapy, and occasionally, when I feel especially tired of it all, I cry. Luckily, that's not that often. But yes, it does happen, and when it does, I allow myself the pleasure, because it always brings a strange sort of relief and peace.
So this weekend, I will be busy, busy, busy. I can't keep Monday from coming, nor do I want to because it wouldn't be in my best interest, so I will concentrate on trying to make peace with that. Let's see how successful I can be at that!
So, the inner voice begins: what will the numbers show, what if they're climbing, are my blood counts and platelets normal enough to receive the chemo, what if this treatment isn't working, blah, blah, blah. This is what living in the shadow of a cancer diagnosis is like. It's always there, following me. Sometimes I'm really good at ignoring it, and at times like this it's like he's constantly reminding me: "I'm still here; I'm still here."
What do I do about this? Keep busy, try to push the negative thoughts as far to the back of my mind as possible, visit with a friend or family member, and sometimes, a little retail shopping therapy, and occasionally, when I feel especially tired of it all, I cry. Luckily, that's not that often. But yes, it does happen, and when it does, I allow myself the pleasure, because it always brings a strange sort of relief and peace.
So this weekend, I will be busy, busy, busy. I can't keep Monday from coming, nor do I want to because it wouldn't be in my best interest, so I will concentrate on trying to make peace with that. Let's see how successful I can be at that!
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