It's been a long time since I've made an entry in here. I have realized recently that cancer is about more than having a disease. It has been about a year and a half since my diagnosis. I can't believe that much time has gone by already. I can't believe it's been that long since cancer has essentially taken over the way I live my life. Not necessarily in a daily way, but more in a futuristic way. It seems that what it comes to planning future events, the first thing to come to mind is not excitement, but instead, how will that event effect my health. I try and try to plan a trip to MN, and keep coming back to that "I can't do that" part of the play. Instead, my mind becomes stuck in a "what if I need a doctor, how will this stress effect my health, what if I'm ill the day we are supposed to leave," never-ending loop. It's almost like being a teenager again, in the sense that before I can plan, instead of checking with my parents, I must 'consult' with my cancer first. And there are actually times when my oncologist tells me that "this may not be in your best interest right now," like, for example, when my brother passed away. I was told it wouldn't be wise to postpone my next chemo. In retrospect, I should have looked into getting chemo in Minneapolis, but then again, the after-chemo side effects would likely lead me to postpone my return flight until I was able travel without too much discomfort.
Healthy people make plans without stopping for an instant to think, what if I get sick, what if I need to be hospitalized? I know there are doctors in my home state, and excellent cancer facilities. And I know that if I need to be hospitalized, does it really matter if it's in Tucson, AZ or Minneapolis, MN. But the disease has somehow managed to erase the logic from my mind and replace it with fear and uncertainties. If a healthy person had these thoughts, we might consider them hypochondriacs, or neurotics. We may even (unkindly) tell them to stop being ridiculous and get on with their lives. Ironically, when you have cancer, you are not allowed the luxury of a simple fix to this solution. At least not for me. There are some people with cancer who can throw all caution to the wind and take their chances. That just doesn't seem to be me.
Tuesday, November 27, 2012
Tuesday, October 9, 2012
To sleep, perchance to dream?
Obviously, the title is borrowed from Shakespeare, but it's fitting for this post. Cancer = blood work, scans, chemo infusions, days spent recovering from chemo, shots to boost up white blood cell counts, and yes, facing one's own mortality. Some days, these tasks are easier than others.
And one other thing it brings is dreams...vivid dreams. In these dreams I see my brothers and my Dad, all who have gone before me. Most of the dreams are pleasant, some not so much. But much to my surprise was the dream I had last night. I was with one of my best friends from high school, Patty Prenevost. I'm using her real name in the extremely off chance that someone who knew her, perhaps even a family member, will see this and know that she is thought of and still missed. Patty and I kept our friendship alive by meeting for coffee every month or so. She passed away after a brief battle with liver cancer. I didn't know. My husband and I were wintering in AZ, and my last contact with her was when I sent her her annual birthday card in January. The day after our return from AZ, Patti's husband called to tell me she had passed. My breath literally left my body, my knees felt weak. She never told me she was sick. I couldn't take it in. I think it was the only thing she never shared with me. I hung up, sat down on the floor and cried.
But last night we were together again at a high school reunion, smiling, laughing, saying sarcastic remarks about certain people (yes, I admit it....they were sarcastic, but they made us laugh). And last night I got to hear that laugh again, see her face and enjoy her company.
So why these dreams about people I've loved and lost? Is it the chemo, the meds I take, or me trying to face my own mortality? I like to think that these dreams are a preview of coming attractions; that I will see them all again. I don't really know. But what I do know is that the dreams usually make me smile in the morning, and waking up with a smile sure beats the alternative! So thank you Patty. It was awesome seeing you again!
And one other thing it brings is dreams...vivid dreams. In these dreams I see my brothers and my Dad, all who have gone before me. Most of the dreams are pleasant, some not so much. But much to my surprise was the dream I had last night. I was with one of my best friends from high school, Patty Prenevost. I'm using her real name in the extremely off chance that someone who knew her, perhaps even a family member, will see this and know that she is thought of and still missed. Patty and I kept our friendship alive by meeting for coffee every month or so. She passed away after a brief battle with liver cancer. I didn't know. My husband and I were wintering in AZ, and my last contact with her was when I sent her her annual birthday card in January. The day after our return from AZ, Patti's husband called to tell me she had passed. My breath literally left my body, my knees felt weak. She never told me she was sick. I couldn't take it in. I think it was the only thing she never shared with me. I hung up, sat down on the floor and cried.
But last night we were together again at a high school reunion, smiling, laughing, saying sarcastic remarks about certain people (yes, I admit it....they were sarcastic, but they made us laugh). And last night I got to hear that laugh again, see her face and enjoy her company.
So why these dreams about people I've loved and lost? Is it the chemo, the meds I take, or me trying to face my own mortality? I like to think that these dreams are a preview of coming attractions; that I will see them all again. I don't really know. But what I do know is that the dreams usually make me smile in the morning, and waking up with a smile sure beats the alternative! So thank you Patty. It was awesome seeing you again!
Thursday, October 4, 2012
Pinktober
It’s October, and everyone know what that means. The color pink is everywhere, it’s goal to raise money for breast cancer research, or so many people think. Actually, only 20.9% of it’s annual budget goes to research, while 39.1% goes to Public Health Education. Really? Is there anyone over the age of 10 that doesn’t know what Pinktober stands for? And perhaps most shocking is the fact that a paltry 5.6% goes to treatment.
While I realize that
breast cancer is devastating to any women who find themselves faced with it, I’d
like to point out something that most people DON’T know. September is Ovarian Cancer Research
month. Our color is teal. Do you see that displayed on products you buy,
are you asked by any cashier, anywhere if you’d like to donate to Ovarian
Cancer Research?
Ovarian cancer
strikes a smaller proportion of women annually, approximately 22,000 women in
the US will be diagnosed each year. And
even if detected early, the disease is most often deadly. There is no screening for early detection. It is often not detected by an annual exam and
pap smear. It’s symptoms generally mimic
gastrointestinal problems and is often misdiagnosed as such until it has progressed to
late stage. I know this because it happened to me.
Know the symptoms,
which are often diagnosed as IBS or urinary disorders:
- Frequent urgent need to urinate
- Changes in bowel habits
- Quickly feeling full when eating
- Abdominal cramping, hardness, and bloating
- Lower back pain or abdominal pain
And the next time
someone asks you if you want to donate to Breast Cancer, go ahead and donate if
your feel the need, but you might also ask them why they don’t recognize that
September is Ovarian Cancer Awareness Month, and why don’t they publicize and support that? Because for the sake of all women, everywhere, awareness is key. Research is key. The right treatment is key. And the only way to turn the key and unlock the mystery of this disease is by calling as much attention to it as is called to breast cancer.
Monday, September 10, 2012
A Day in the Life (?) of.
Well damn it. Last night it dawned on me that my oncs office hadn't called to confirm my appt today. They always call. So, I started looking for my appt card: in my purse, in my billfold, in my makeup bag, in every compartment that zipped. Nothing. Next went to the car and looked in all the places I could have put the card. Nothing. Next, went to my closet and looked in all my pockets of any pants I would have worn, and every cotton knit jacket I would have worn (because it's always cold in there). Nothing. Got up this morning, got ready to go, but called the clinic first before we left. Nope, nothing scheduled, nothing scheduled at all this week. She didn't know what happened. Told me they would call me back. Didn't call for 4 hours, so I called them back. I am scheduled to see the doc tomorrow, and have chemo on Wednesday. Asked them to call me back and give me my ca125 number today. Said they would. That was two hours ago. So.......yes, I am pissed, and frustrated, and anxious.
Angry? Of course I'm angry. This disease (I'd like to purge the word cancer from both my body and mind). It robs you of your dreams, your, plans, your hopes. It leaves your future uncertain. And not just from me, but from my family as well. Well, disease, you will do what you're going to do with me, but LEAVE MY FAMILY ALONE.
Angry? Of course I'm angry. This disease (I'd like to purge the word cancer from both my body and mind). It robs you of your dreams, your, plans, your hopes. It leaves your future uncertain. And not just from me, but from my family as well. Well, disease, you will do what you're going to do with me, but LEAVE MY FAMILY ALONE.
Monday, September 3, 2012
It whispers!
Ladies, please take a minute to visit:
September is National Ovarian Cancer Month.
So much is known about breast cancer. We are all reminded about mammograms and early detection. Seems like very few know about ovarian cancer: the cancer that whispers. Educate yourself so that you have a stronger voice when you visit your doctor with concerns. I had g.i. issues. I was told it was IBS, I was told it was diverticulosis, I was told it was acid reflux. Actually, both doctors were wrong. This story of misdiagnosis is all too common. Seems like way too many doctors don't recognize the symptoms either. It was ovarian cancer. When your inner voice is telling you they are missing something, make them hear you!
Saturday, August 18, 2012
Just When you Think it Couldn't Be Any Worse
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.
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.
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!
Monday, June 11, 2012
Thursday, May 31, 2012
Protocol Perplexity
Lately there have been several discussions in my online support group about which diet is better for ovarian cancer. Or which supplements? Or which naturopath has the right plan? Some of these discussions can easily escalate to disagreements, which is when I leave. Do I really need to fight and bicker with women who share the same journey I do? No.
And most importantly, these discussions offer no concrete proof of any treatment or diet that promises healing. Sure, there are cases where "my aunt did the 'xyz' protocol and she's healthy 20 years later." Great! That's wonderful news! But guess what? Maybe she would have been healthy 20 years later, no matter what she did, be it chemo or some other protocol. Not nearly enough people who have done this or that protocol are still healthy 20 years later. If any of these protocols were successful even 80% of the time, why would anyone undergo chemo and all the ugliness that goes with it?
I'm beginning to think that if it's going to come back, it's coming back. Sure, a healthy diet is better for anyone, but the realist in me says that now that I have cancer, if it seriously mattered what I eat or don't eat, why do chemo? Why not just a healthy diet and forego the chemo? Or maybe I should combine the two???? Or maybe I should just do the chemo and eat whatever I want. Or, just maybe, there is no guarantee that what I eat or don't eat will keep it from coming back. Yes, there are women who have done everything right; some have survived and some have not. Just as there are women who have eaten whatever they wanted; some have survived and some have not. Will eating the right things help us to live with this disease in a stable state, longer? I have done a lot of reading, and I can unequivocally say I have no idea. In the end, maybe we all should just do what feels right to ourselves, for ourselves. The last thing we need is to feel guilty about the decisions we make.
Above all, what we really need in trying to live with this disease is peace of mind. I think I would rather concentrate on achieving that as opposed to freaking out if I put a chocolate chip cookie in my mouth.
And most importantly, these discussions offer no concrete proof of any treatment or diet that promises healing. Sure, there are cases where "my aunt did the 'xyz' protocol and she's healthy 20 years later." Great! That's wonderful news! But guess what? Maybe she would have been healthy 20 years later, no matter what she did, be it chemo or some other protocol. Not nearly enough people who have done this or that protocol are still healthy 20 years later. If any of these protocols were successful even 80% of the time, why would anyone undergo chemo and all the ugliness that goes with it?
I'm beginning to think that if it's going to come back, it's coming back. Sure, a healthy diet is better for anyone, but the realist in me says that now that I have cancer, if it seriously mattered what I eat or don't eat, why do chemo? Why not just a healthy diet and forego the chemo? Or maybe I should combine the two???? Or maybe I should just do the chemo and eat whatever I want. Or, just maybe, there is no guarantee that what I eat or don't eat will keep it from coming back. Yes, there are women who have done everything right; some have survived and some have not. Just as there are women who have eaten whatever they wanted; some have survived and some have not. Will eating the right things help us to live with this disease in a stable state, longer? I have done a lot of reading, and I can unequivocally say I have no idea. In the end, maybe we all should just do what feels right to ourselves, for ourselves. The last thing we need is to feel guilty about the decisions we make.
Above all, what we really need in trying to live with this disease is peace of mind. I think I would rather concentrate on achieving that as opposed to freaking out if I put a chocolate chip cookie in my mouth.
Wednesday, April 25, 2012
New Normal....Huh?
"What's it like living with cancer" you may ask. Or should I say want to ask. Most people just ask how I am feeling, or say, gee, you look great. No one has ever asked me what it's like living with it. I imagine they think it's an inappropriate question, but really, it's not. My dad always said "If you don't know something, ask." I think he was right. People can choose not to answer, but no one should be offended by an honest question. How else do we learn?
One of the phrases a cancer patient (I refuse to say victim) learns fast is "you will adjust to your new normal." I reject that statement. You do learn to live with it, but you never learn to adjust to it. Why? Because there is nothing normal about this new way of life. It's difficult to make plans for future events, because I never know what may happen between now and said future event. If I buy airline tickets now, I buy travel insurance in the event I have to cancel. I get nervous being far away from my doctor. She knows me, she know my medical history, we have bonded. She has become the friend I never wanted to have, but I am lucky to have her. If people say they are flying out to visit, my first thought is always "what if I don't feel well then? I don't want to ruin anyone's vacation." That's my new normal response. My normal response would have been "oh goody, I just can't wait to see you. We'll do this, this, and this, eat here and there, maybe play some golf, etc."
Every ache and pain is a worry....what is that, more cancer? Things I normally wouldn't have paid one bit of attention to now set off alarm bells. My doctor has always said "don't hesitate to call me if you have concerns." Well, no, I don't think she'd really want that....there are days I'd call her six times!
Then there are insurance issues. The first thing I looked into when I was diagnosed was coverage for 'mental health issues.' I wanted counseling, because if a cancer diagnosis isn't a good reason to seek counseling, I don't know what would be. I have a good policy, so I didn't expect it to be a problem. Wrong again! I discovered that mental health issues aren't covered. Huh? Really? No coverage for counseling???? Nope! I also found out that this is not unusual in most policies. So, I conclude that many insurance companies obviously don't consider one's mental health an important piece of one's overall health. See how wrong they can be? Left out in the cold again. Fortunately, I found a fantastic group of women online. This is a group only for women with an ovarian cancer diagnosis. The downside is, we are from all over the world, so we cannot meet face-to-face. The upside is, the door is always open, 24/7, and we all have had the same thoughts, felt afraid at times, shared each others victories and defeats in a way that those lucky enough to not have cancer could never understand. This is one scenario in which the old adage "you don't know if you haven't walked in my shoes" totally applies.
Every year that we age brings with it a little more loss of our naivety. This is universal; it happens to all of us. As we are celebrating yet another birthday, a bit more of that naivety is chipped off. It happens slowly, so we hardly notice it and it really doesn't cause much alarm, still, we are aware of it happening. A cancer diagnosis doesn't just chip away another piece of that. It totally rips it all the way off. It's gone and we are left without that protective shield. I hate being totally robbed of all of my naivety.
And, I hate waiting for the other shoe to drop. Another unwanted part of my new normal.
And then there is the way it changes the lives of your loved ones. No one, and I really mean no one, wants to bring that kind of change into someone's life. I don't want people to worry about me. Worrying is useless, accomplishes nothing and doesn't change anything. It just brings anxiety and discomfort, neither of which I want to inflict on my family and friends. "Regular" life does enough of that on it's own. I don't want to add to it. So, to my loving family and friends, if you are reading this, please don't worry. Much more helpful would be prayers, sending good vibes, and/or healing thoughts, to whatever or whomever you call upon during difficult times that would be much, much more appreciated. I have my loving husband who holds me in his arms when I need it, and through him I feel the warmth of all of you. What more could I ask for?
These are just a few examples of what it's like to have this new normal. I'll get used to it? Realistically, no, I don't think so.
Having said all that, it is NOT all gloom and doom. There is yet another old adage that I hold onto these days, and that is, when life gives you lemons, make lemonade. And I do. And yes, even in this new normal, I can and do still laugh, and still find joy in each day. Because life is worth living to it's fullest, even in the difficult times. It's still mine to live as I choose, and I choose to wrap myself up tight in all the good it can be. I've learned that when that blanket slips off, it can actually be picked up and put back on again! It's good to learn that.
One of the phrases a cancer patient (I refuse to say victim) learns fast is "you will adjust to your new normal." I reject that statement. You do learn to live with it, but you never learn to adjust to it. Why? Because there is nothing normal about this new way of life. It's difficult to make plans for future events, because I never know what may happen between now and said future event. If I buy airline tickets now, I buy travel insurance in the event I have to cancel. I get nervous being far away from my doctor. She knows me, she know my medical history, we have bonded. She has become the friend I never wanted to have, but I am lucky to have her. If people say they are flying out to visit, my first thought is always "what if I don't feel well then? I don't want to ruin anyone's vacation." That's my new normal response. My normal response would have been "oh goody, I just can't wait to see you. We'll do this, this, and this, eat here and there, maybe play some golf, etc."
Every ache and pain is a worry....what is that, more cancer? Things I normally wouldn't have paid one bit of attention to now set off alarm bells. My doctor has always said "don't hesitate to call me if you have concerns." Well, no, I don't think she'd really want that....there are days I'd call her six times!
Then there are insurance issues. The first thing I looked into when I was diagnosed was coverage for 'mental health issues.' I wanted counseling, because if a cancer diagnosis isn't a good reason to seek counseling, I don't know what would be. I have a good policy, so I didn't expect it to be a problem. Wrong again! I discovered that mental health issues aren't covered. Huh? Really? No coverage for counseling???? Nope! I also found out that this is not unusual in most policies. So, I conclude that many insurance companies obviously don't consider one's mental health an important piece of one's overall health. See how wrong they can be? Left out in the cold again. Fortunately, I found a fantastic group of women online. This is a group only for women with an ovarian cancer diagnosis. The downside is, we are from all over the world, so we cannot meet face-to-face. The upside is, the door is always open, 24/7, and we all have had the same thoughts, felt afraid at times, shared each others victories and defeats in a way that those lucky enough to not have cancer could never understand. This is one scenario in which the old adage "you don't know if you haven't walked in my shoes" totally applies.
Every year that we age brings with it a little more loss of our naivety. This is universal; it happens to all of us. As we are celebrating yet another birthday, a bit more of that naivety is chipped off. It happens slowly, so we hardly notice it and it really doesn't cause much alarm, still, we are aware of it happening. A cancer diagnosis doesn't just chip away another piece of that. It totally rips it all the way off. It's gone and we are left without that protective shield. I hate being totally robbed of all of my naivety.
And, I hate waiting for the other shoe to drop. Another unwanted part of my new normal.
And then there is the way it changes the lives of your loved ones. No one, and I really mean no one, wants to bring that kind of change into someone's life. I don't want people to worry about me. Worrying is useless, accomplishes nothing and doesn't change anything. It just brings anxiety and discomfort, neither of which I want to inflict on my family and friends. "Regular" life does enough of that on it's own. I don't want to add to it. So, to my loving family and friends, if you are reading this, please don't worry. Much more helpful would be prayers, sending good vibes, and/or healing thoughts, to whatever or whomever you call upon during difficult times that would be much, much more appreciated. I have my loving husband who holds me in his arms when I need it, and through him I feel the warmth of all of you. What more could I ask for?
These are just a few examples of what it's like to have this new normal. I'll get used to it? Realistically, no, I don't think so.
Having said all that, it is NOT all gloom and doom. There is yet another old adage that I hold onto these days, and that is, when life gives you lemons, make lemonade. And I do. And yes, even in this new normal, I can and do still laugh, and still find joy in each day. Because life is worth living to it's fullest, even in the difficult times. It's still mine to live as I choose, and I choose to wrap myself up tight in all the good it can be. I've learned that when that blanket slips off, it can actually be picked up and put back on again! It's good to learn that.
Tuesday, March 27, 2012
No Storm Waves, for Now
Yesterday was my first re-check by my doctor after three months chemo-free. The technical update is CA125 elevated by 3, no need for concern were the first words I heard. After my exam, I was given the "everything seems good" and we are still clinically in a 'good place'. Since I am currently feeling good, with the exception of a few on-going chemo side effects, we will continue on another 3-month no chemo cycle. What I learned yesterday is that even though the chemo drugs are out of my system, the after effects can remain for quite a while. She did not seem overly concerned about mine, just instructed me to keep an eye on things and call her if anything changes. I can do that! I must say that there is not one part of me that misses those 6 to 7 hour days of infusion. As wonderful as the chemo nurses are, and as comfortable as they make it for all of us there, it's really not a great way to spend the day. There has been a positive to those days, however, and that is that I met some wonderful people there. People who know what it's like to be me, who have and are still going through it. People with whom I put no disguise on for. That doesn't mean that it's all doom and gloom with them. Quite the opposite. We talk about things other than cancer, we tell stories about our lives, and we even laugh. But if I happen to be having a day where I'm feeling scared, or down, or just tired of it all, I don't have to hide that. My friends just nod their heads in understanding because they've all been there. That comforts me, because there are times when I'm with 'normal' people that I feel like I'm on the outside looking in. And I feel an obligation to appear upbeat and feeling good so as not to worry people. Sometimes, that is exhausting. This disease can do that.
But, enough of that. For now, the waters are still, and if there was a beach nearby I'd roll up my pants, take off my shoes and enjoy the feel of the gentle sea washing up and over my feet. But since this is the desert I'll just settle for enjoying the beautiful spring desert blooms, the lovely days and the beautiful sunsets over the mountains. And I'll thank God for the opportunity to do this.
But, enough of that. For now, the waters are still, and if there was a beach nearby I'd roll up my pants, take off my shoes and enjoy the feel of the gentle sea washing up and over my feet. But since this is the desert I'll just settle for enjoying the beautiful spring desert blooms, the lovely days and the beautiful sunsets over the mountains. And I'll thank God for the opportunity to do this.
Saturday, March 24, 2012
The Journey, to date.
So what road have I traveled this past year? I must admit that while it has had its difficult days, for the most part I've managed to stay at work (with limited hours) and take a trip to MN to see my beautiful daughter get married. The highlight of my year, I must add. There is nothing more satisfying than seeing your child happily embarking on a new life with a companion who will hopefully be at her side through thick and thin. Thank you, son-in-law!
But, I digress (however in a good way!). To begin, my gynecologist/oncologist (which, by the way, is a must should this dark visitor ever come knocking on your door) recommended we do chemo prior to considering therapy. I did not seek a second opinion at that time because I had absolutely no knowledge of this beast, and would have had no way to know which recommendation would better serve me. I felt it would only add to my confusion and leave me stuck with the "what if I picked the wrong one" question circling in my head. I already had enough of those. What I really needed at the time was a plan and the ability to start acting on it. Not more delays. And so we began.
Chemo started the following week, after more blood work and a CT scan. I also had a port inserted under my skin just under the collar bone on the left side to avoid contstant "good vein" searching. That has been terrific. My chemo consisted of pre-infusion of saline, steroids, and anti-nausea meds. After that we went with the big guns: carboplatin, taxol. This process took 6 -7 hours, every third Monday. During that time were more blood tests, measuring both white and red blood cell countn (and various other counts) and my CA125, the ovarian cancer blood marker. More on that later. My first infusion was the most uncomfortable, side effect wise. Luckily my daughter was here with me and helped me deal with it. Again, she was the blessing she's always been. Subsequent chemos did bring side effects, but I learned to manage them (the nausea, bowel problems [enough said]) with the right meds. After my sixth round, another drug was added: avastin, which is known for its ability to stop blood flow to the dastardly cells. It also aids in draining the fluid which collects in the omentum (the lining around the stomach, hence the bloating) and around the lungs (which makes breathing difficult). And yes, I had both of those things. OVCA is known for its ability to metastasize to the liver, lungs, bowels, lymph nodes, and evidently anything else it feels like visiting, with the formerly-mentioned the most likely. Avastin is powerful, gave me terrible headaches and left me so tired I could barely stay awake for more than 2 hours at a time. DID NOT LIKE. But I continued on with 5 additional sessions of it, which brought me to the first week in December. And except for chemo week, I kept working, which actually helped me to get out and feel normal again.
The week before Christmas I saw my gyn/onc for the result of my recent PET scan (a better, more thorough detector of rogue cells than a CT scan) and what I thought would be another round of chemo. Not to be! The PET scan showed all major organs to be clear and the blood work showed that my CA125 (see above) had dropped from its original reading of 3,000+ to 14. "Normal" is considered anything under 35. It was recommended we take a 3 month break from chemo to let the avastin get out of my system completely and to give my body a rest from the poison that had been dripping into me for 7 months.
Merry Christmas to me!
Monday I have my follow-up visit to see what my blood work shows, and to talk options and next steps. My weekend will be somewhat anxiety-ridden, which brings to mind another whole aspect of the disease; dealing with the emotional side of it. That I will leave for another post, at another time.
I am grateful for the love and support of my husband, family, and friends during this past year. And I grieve for those women who ride this train by themselves.
But, I digress (however in a good way!). To begin, my gynecologist/oncologist (which, by the way, is a must should this dark visitor ever come knocking on your door) recommended we do chemo prior to considering therapy. I did not seek a second opinion at that time because I had absolutely no knowledge of this beast, and would have had no way to know which recommendation would better serve me. I felt it would only add to my confusion and leave me stuck with the "what if I picked the wrong one" question circling in my head. I already had enough of those. What I really needed at the time was a plan and the ability to start acting on it. Not more delays. And so we began.
Chemo started the following week, after more blood work and a CT scan. I also had a port inserted under my skin just under the collar bone on the left side to avoid contstant "good vein" searching. That has been terrific. My chemo consisted of pre-infusion of saline, steroids, and anti-nausea meds. After that we went with the big guns: carboplatin, taxol. This process took 6 -7 hours, every third Monday. During that time were more blood tests, measuring both white and red blood cell countn (and various other counts) and my CA125, the ovarian cancer blood marker. More on that later. My first infusion was the most uncomfortable, side effect wise. Luckily my daughter was here with me and helped me deal with it. Again, she was the blessing she's always been. Subsequent chemos did bring side effects, but I learned to manage them (the nausea, bowel problems [enough said]) with the right meds. After my sixth round, another drug was added: avastin, which is known for its ability to stop blood flow to the dastardly cells. It also aids in draining the fluid which collects in the omentum (the lining around the stomach, hence the bloating) and around the lungs (which makes breathing difficult). And yes, I had both of those things. OVCA is known for its ability to metastasize to the liver, lungs, bowels, lymph nodes, and evidently anything else it feels like visiting, with the formerly-mentioned the most likely. Avastin is powerful, gave me terrible headaches and left me so tired I could barely stay awake for more than 2 hours at a time. DID NOT LIKE. But I continued on with 5 additional sessions of it, which brought me to the first week in December. And except for chemo week, I kept working, which actually helped me to get out and feel normal again.
The week before Christmas I saw my gyn/onc for the result of my recent PET scan (a better, more thorough detector of rogue cells than a CT scan) and what I thought would be another round of chemo. Not to be! The PET scan showed all major organs to be clear and the blood work showed that my CA125 (see above) had dropped from its original reading of 3,000+ to 14. "Normal" is considered anything under 35. It was recommended we take a 3 month break from chemo to let the avastin get out of my system completely and to give my body a rest from the poison that had been dripping into me for 7 months.
Merry Christmas to me!
Monday I have my follow-up visit to see what my blood work shows, and to talk options and next steps. My weekend will be somewhat anxiety-ridden, which brings to mind another whole aspect of the disease; dealing with the emotional side of it. That I will leave for another post, at another time.
I am grateful for the love and support of my husband, family, and friends during this past year. And I grieve for those women who ride this train by themselves.
Tuesday, March 20, 2012
Yes, really.
Hello to all who end up reading this blog. I created this two months ago, and haven't been able to post since I set it up. Not because I've been feeling sick, but I think mostly because I felt that if I wrote about it, then it would become real. Guess it finally hit me that it IS real, and now that I have faced that, I may as well write about it. People say journaling is therapeutic. We'll see.
My journey with this beast, which is my name for ovarian cancer, began in January, 2011. I just didn't feel right. And my stomach was bloated, as in "I look 7 months pregnant" bloated. I kept pointing that out, but nobody seemed all that concerned about it. After too -many-to-remember visits to my g.p., and a gastroenterologist, a colonoscopy, blood work, etc., I was given several diagnosis'. IBS, acid reflux, diverticulosis, stress, IBS, a hiatal hernia, stress, IBS, acid reflux, stress. You get the picture. I knew that what my body was exhibiting, and what I felt in my gut were two completely different things, but the docs didn't seem to be listening. I do believe my doctors were beginning to consider me a complete hypochondriac, which I actually even considered myself a few times. Until I went to the ER one night in extreme pain trying to pass a kidney stone. The ER doctor took one look at me (well, really at my stomach) and said "Whoa....let's get a cat scan here." Yay, someone was finally paying attention! And the result of that attention was "you have ovarian cancer, most likely stage IV." HUH? Even though I was dubious, really dubious, when the other docs kept telling me IBS, stress, etc........I never expected that diagnosis. The symptoms just didn't feel at all related to any 'female' disorder.
Thus the reason for this first post. Ladies, KNOW the symptoms of ovca: http://ovariancancer.jhmi.edu/symptoms.cfm If any of them persist for more than two weeks, see your doctor, take the list of the symptoms with you and make them prove to you it's NOT cancer. There is a wealth of "pink" information out there, but not much "teal" (the color for ovca) information. And while your chances of developing ovca are much slimmer than developing breast cancer, the former is much more difficult to diagnosis (a pap smear doesn't do it) and treat, and much more difficult to survive. So please, take a minute to know the symptoms, because there is no test for it, no billboards, no marathons (well, there are marathons, but unless you have the disease you're not likely to know about them). It is called the disease that whispers, and it definitely is that. Unfortunately, my story of diagnosis is not much different from thousands of other women with this disease, which is why the majority of those diagnosed with this are already in late stage.
I will probably post more later, but my main objective right now is to get the word out to as many women as I can. It really is that important.
~cat
My journey with this beast, which is my name for ovarian cancer, began in January, 2011. I just didn't feel right. And my stomach was bloated, as in "I look 7 months pregnant" bloated. I kept pointing that out, but nobody seemed all that concerned about it. After too -many-to-remember visits to my g.p., and a gastroenterologist, a colonoscopy, blood work, etc., I was given several diagnosis'. IBS, acid reflux, diverticulosis, stress, IBS, a hiatal hernia, stress, IBS, acid reflux, stress. You get the picture. I knew that what my body was exhibiting, and what I felt in my gut were two completely different things, but the docs didn't seem to be listening. I do believe my doctors were beginning to consider me a complete hypochondriac, which I actually even considered myself a few times. Until I went to the ER one night in extreme pain trying to pass a kidney stone. The ER doctor took one look at me (well, really at my stomach) and said "Whoa....let's get a cat scan here." Yay, someone was finally paying attention! And the result of that attention was "you have ovarian cancer, most likely stage IV." HUH? Even though I was dubious, really dubious, when the other docs kept telling me IBS, stress, etc........I never expected that diagnosis. The symptoms just didn't feel at all related to any 'female' disorder.
Thus the reason for this first post. Ladies, KNOW the symptoms of ovca: http://ovariancancer.jhmi.edu/symptoms.cfm If any of them persist for more than two weeks, see your doctor, take the list of the symptoms with you and make them prove to you it's NOT cancer. There is a wealth of "pink" information out there, but not much "teal" (the color for ovca) information. And while your chances of developing ovca are much slimmer than developing breast cancer, the former is much more difficult to diagnosis (a pap smear doesn't do it) and treat, and much more difficult to survive. So please, take a minute to know the symptoms, because there is no test for it, no billboards, no marathons (well, there are marathons, but unless you have the disease you're not likely to know about them). It is called the disease that whispers, and it definitely is that. Unfortunately, my story of diagnosis is not much different from thousands of other women with this disease, which is why the majority of those diagnosed with this are already in late stage.
I will probably post more later, but my main objective right now is to get the word out to as many women as I can. It really is that important.
~cat
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