July 11, 2016
I've always loved to talk and write and share my story with people. I've lived a pretty adventurous life, nothing exotic, but certainly not boring. But in 2014 my story took a sharp turn in the direction of tumultuous. Overnight I went from being a whimsical, fun loving character in my life story to suddenly having to find a brave and courageous character within me. Now my life is about finding out how to mix bravery and whimsy, and how to balance my fun loving spirited side with
my new courageous side. I am trying to find, as they say, my "new normal". I am looking for balance. I am hoping to find a way to live my life without constantly focusing on "the next scan". Living life 90 days at a time, from one scan to the next, is no picnic. Not for me, or for the people in my life. It is my hope that this blog will help other Cancer patients, and their families and friends, connect with each other, and develop an understanding of what life is like when Cancer is present every single day. We all have a lot to learn, so let's do it together. Be sure to check out my About Me section for more details of my Cancer and how to contact me.
Because my name is Sue, my daughter Kara came up with the clever name of my blog. I am not just a survivor--I am Sue-vivor. I like it because it makes me feel like I'm a superhero. (Did you know that standing like a superhero, hands on your hips, elbows bent, and feet slightly apart, actually increases your testosterone and decreases cortisol (stress hormone)? ) I picture myself sauntering around with my cape fluttering in the wind behind me, spreading hope and inspiration to all whose lives are touched by Cancer. Pretty cool image, but... not a reality.
I thought I would start with a reality that I, a newly diagnosed Stage 4 Cancer girl, find important. I now share with you my own personal guide to...drum roll please... Cancer Do's and Don'ts. Otherwise known as "how to respond and react when someone tells you they have Cancer." *Disclaimer: Some of the following responses are specific to Stage 4 or recurring Cancer only. The views of other people with Cancer may vary. Please keep your hands and feet inside the ride at all times as it's gonna get bumpy!
Do
*Say things like "that sucks" and "I'm sorry"
*Offer help (but only if you mean it)
*Offer to pray with/for me
*Send a cute card or note
*Offer to run to the store for me (It helps if you say "I'm on my way to the grocery store, can I pick something up for you?" That makes me feel less needy since you are already going)
*Leave a note or treat by my door- random little things mean the most (and it's nice if I don't have to answer the door because I might not be up for a surprise visit)
*Call me on the spur of a moment to invite me out. Often I can't commit to a plan ahead of time, but that doesn't mean I don't want to go. And it's always nice to be asked.
Don't
*Ask "how long do you have?"
*Tell me about your sister's mother-in-law's cousin's friend who had Stage 4 Cancer and either:
A. Beat it 4 times and is doing great! or
B. Died 2 weeks after the same diagnosis
*Tell me that chemo drugs are just a government conspiracy and the government actually pays the Cancer researchers to NOT come up with a cure so the drug companies can keep making money (thereby implying I am stupid to get chemo)
*Tell me that if I had a husband to go to the doctor with it would help, because everyone knows that women will do whatever the doctor recommends without question (once again, I'm stupid)
*Say that having a positive attitude makes the Cancer go away (yes, it helps, but it is not a cure)
*Tell me "you beat it once so you can beat it again"
*Tell me about a "miracle cure"
*Say "You're so strong- you can do it! (It makes me feel like it's not okay to be vulnerable or have a bad day)
The list could go on and on, but I think you get the idea. Feel free to share some of your favorites too. Until next time, Sue
I've always loved to talk and write and share my story with people. I've lived a pretty adventurous life, nothing exotic, but certainly not boring. But in 2014 my story took a sharp turn in the direction of tumultuous. Overnight I went from being a whimsical, fun loving character in my life story to suddenly having to find a brave and courageous character within me. Now my life is about finding out how to mix bravery and whimsy, and how to balance my fun loving spirited side with
my new courageous side. I am trying to find, as they say, my "new normal". I am looking for balance. I am hoping to find a way to live my life without constantly focusing on "the next scan". Living life 90 days at a time, from one scan to the next, is no picnic. Not for me, or for the people in my life. It is my hope that this blog will help other Cancer patients, and their families and friends, connect with each other, and develop an understanding of what life is like when Cancer is present every single day. We all have a lot to learn, so let's do it together. Be sure to check out my About Me section for more details of my Cancer and how to contact me.
Because my name is Sue, my daughter Kara came up with the clever name of my blog. I am not just a survivor--I am Sue-vivor. I like it because it makes me feel like I'm a superhero. (Did you know that standing like a superhero, hands on your hips, elbows bent, and feet slightly apart, actually increases your testosterone and decreases cortisol (stress hormone)? ) I picture myself sauntering around with my cape fluttering in the wind behind me, spreading hope and inspiration to all whose lives are touched by Cancer. Pretty cool image, but... not a reality.
I thought I would start with a reality that I, a newly diagnosed Stage 4 Cancer girl, find important. I now share with you my own personal guide to...drum roll please... Cancer Do's and Don'ts. Otherwise known as "how to respond and react when someone tells you they have Cancer." *Disclaimer: Some of the following responses are specific to Stage 4 or recurring Cancer only. The views of other people with Cancer may vary. Please keep your hands and feet inside the ride at all times as it's gonna get bumpy!
Do
*Say things like "that sucks" and "I'm sorry"
*Offer help (but only if you mean it)
*Offer to pray with/for me
*Send a cute card or note
*Offer to run to the store for me (It helps if you say "I'm on my way to the grocery store, can I pick something up for you?" That makes me feel less needy since you are already going)
*Leave a note or treat by my door- random little things mean the most (and it's nice if I don't have to answer the door because I might not be up for a surprise visit)
*Call me on the spur of a moment to invite me out. Often I can't commit to a plan ahead of time, but that doesn't mean I don't want to go. And it's always nice to be asked.
Don't
*Ask "how long do you have?"
*Tell me about your sister's mother-in-law's cousin's friend who had Stage 4 Cancer and either:
A. Beat it 4 times and is doing great! or
B. Died 2 weeks after the same diagnosis
*Tell me that chemo drugs are just a government conspiracy and the government actually pays the Cancer researchers to NOT come up with a cure so the drug companies can keep making money (thereby implying I am stupid to get chemo)
*Tell me that if I had a husband to go to the doctor with it would help, because everyone knows that women will do whatever the doctor recommends without question (once again, I'm stupid)
*Say that having a positive attitude makes the Cancer go away (yes, it helps, but it is not a cure)
*Tell me "you beat it once so you can beat it again"
*Tell me about a "miracle cure"
*Say "You're so strong- you can do it! (It makes me feel like it's not okay to be vulnerable or have a bad day)
The list could go on and on, but I think you get the idea. Feel free to share some of your favorites too. Until next time, Sue
July 18, 2016
The Waiting/Weighting Game
Well delegates, it has been an interesting week here in Cancer town. On Wednesday I began having pretty severe chest pain- the same pain that sent me to my doctor back in April that resulted in my Stage IV diagnosis. Oddly, I have not had that chest pain since the original diagnosis. (Leading me to believe that perhaps God was using that strange pain as a signal to me that something was wrong. Though I do have two cats, neither of them appear to be one of those “Cancer Detecting Wonder Cats”. Luckily, I had pain to signal the illness.) Now it has returned, with a vengeance. On the handy dandy doctor scale of rate your pain 1-10, it has now reached a solid 8.2. (Side note- if you ever end up in an Emergency Room you have your choice of the 1-10 scale, or you can just point to the graph on the wall and pick out which smile or frown face you feel like.)
I digress. Off to the oncologist. Once you are diagnosed with a terminal illness you truly need to get accustomed to waiting. A lot. (I remember the time my son Ryan had to go to the ER for something and he brought with his favorite book, War and Peace. The doctor who examined him laughed and asked if he thought the wait would be that long!) I check in at the desk and immediately go to the lab where they draw my blood so that the doctor will have the results in ten minutes, my appointment time. Meanwhile, I become engrossed in the 1998 Better Homes and Gardens article about creating quick crock-pot recipes for my family and suddenly 55 minutes has passed right by. (Sadly, someone has already torn out the recipe for the pictured Taco Tater Tot Casserole.) I am relieved to see that the nurse taking me back is "the nice one”. She is very pleasant while she takes my temperature (101), heart rate (107), blood pressure, (too low for the automatic machine to get so she has to do it the old fashioned way) and weight (???). She expresses her concern and says the doctor will be right in.
The ten minute wait flies by as I am busy performing a frenzied online search for that Taco Tater Tot casserole recipe.
Dr. J: briskly enters the room looking frazzled How are you feeling?
Me: Not good at all
Dr. J.: Are you all set to start your chemo?
Me: I already started 3 weeks ago.
Awkward silence while Dr. J tries to remember who I am.
Dr. J: Oh, yes, well...let me pull up your chart. I always have trouble trying to get the computer to do what I want. Makes multiple attempts to sign in. Oh, yes, I see here you just finished your first cycle of chemo. Looks like that went well. Are you ready to start the next cycle?
Me: Well I have a fever and my heart is racing and I have severe chest pain.
Dr. J: Oh, well her cell phone rings Sorry, I have to take this. She proceeds to talk to what appears to be a nurse at a hospital about a patient for about 4 minutes. Why don’t you get undressed so I can examine you. Leaves.
7 minutes later she returns.
Dr. J: Well everything looks ok to me. You should make an appointment to see your regular doctor about the chest pain. It’s not cancer related. Go ahead and get dressed. Exits- Never.To. Return.
In walks the surly nurse (where did the nice one go???).
Surly Nurse: I’ll call you later today with the blood test results to let you know if you can start your next round of chemo tomorrow.
Me: Wait a minute. Why don’t you have the results? The lab tech said you would have them in ten minutes and I’ve been here now for an hour and a half.
Surly Nurse: Well, I will call you later with the results.
Me: I would like to have them now please.
Surly Nurse: sighs heavily Well ok, I will go get them now then.
Me: Only in my head- Yeah! Maybe you should do your job?!
4 minutes pass. Do I really think tacos and tater tots are a good combo?
Surly Nurse: Ok, well your white blood count is too low to start back up on the chemo, so we will have to check it again next week. I will mail you the order. Opens door to leave.
Me: Ok, well I would like a copy of the test results please.
Surly Nurse: responds with clear contempt I’ll be right back.
2 minutes later- clearly she can’t wait to be rid of me now.
Surly Nurse: Here you go. Exits. Never. To. Return.
Fast forward to the next day, sitting in the waiting room for the “regular doctor”. Unfortunately my primary doctor is off today and I have to see someone else in the practice. The doctor, wearing over-sized peace sign earrings and a tye-dye long dress, walks in and quickly introduces herself.
Dr. W: Well I’m fairly certain the fever and heart rate are a virus. We will go ahead and do an EKG even though I’m sure that will come back fine. You don’t present as a cardiac problem. The nurse will be right in. Exits
The nurse returns with the machine and a paper hospital gown. She instructs me to put on the gown, opening in front, and she will be right back. The “gown” is thinner than construction paper, but luckily I manage to get it on without ripping it. However, while it closes on the top, it does not quite cover my fifty something, three kids, and too many cookies stomach. Oh well. The nurse returns and makes small talk while she begins the EKG. She comments that she doesn’t think it’s cardiac either, she is sure it is a side effect of chemo.
As soon as the report spits out of the machine:
Nice Nurse: Oh...well... I’m just going to do a second one because I like to always double check. She then performs the test again. Ok, well I will get the doctor now. Don’t get dressed yet in case the doctor wants to do another test.
Hmmm...this doesn’t sound promising. I wait just a few minutes for the doctor to return.
Dr. W: It shows here that your EKG is not quite normal. It appears that blah blah blah how many big medical words can I throw at you blah blah. You’ll have to see a cardiologist.
Me: Would you please explain to me what you just said?
Dr. W: There is a problem with the voltage in your heart. It could be caused by air, fluid, or...dramatic pause...your size. Follow up with a cardiologist. Exits.
I look down at the gown that won’t quite close over my motherly shape. I know I should lose a few pounds, but so should most fifty something women who sometimes find comfort in a bag of Hostess powdered donuts. As if having Stage IV isn’t bad enough, I now have to endure scathing looks and scolding comments about my “size”.
The next day the waiting game continues. I leave two messages for Dr. Disdain (oops..Dr. W.) and get no answer. Undaunted by the lack of response, I call a third time to get the chest x-ray results. This time I actually play the Cancer card, telling the operator that I am very anxious to get the chest x-ray results because I have Stage IV Cancer and am worried about whether or not it spread. He is very sympathetic and promises to mark the note “urgent”. By bedtime I still have no answer. (Nor have I been able to find that Taco Tater Tot Casserole recipe!)
Day Two of waiting for results begins with a fever and chest pain. At 9:01 I call my doctor’s office, figuring it’s best to bypass Dr. W. all together. My primary care physician, Doris Hein, is absolutely wonderful. Her nurse Katie calls me back within the hour to let me know the chest x-ray shows no change in the tumor and no pneumonia. The doctor refers me to a cardiologist. But at least I got the news, finally, about the X-ray and I live to tell of another adventure!
Even though we are often forced to play the waiting game for many things in life, that doesn’t mean we have to be a doormat. I am constantly being my own best advocate. It may take multiple tries, and it may be very frustrating, but in the end the point is to not give up and to not take a No answer from someone who is not authorized to give it. Hold your doctor accountable. Remember, they work for you and you have every right to expect answers in a timely, and polite, fashion. You hired them, and you can fire them. I am now searching for a new oncologist, as this one has used up her three strikes.
Thank you to everyone for the outpouring of support for my blog. I hope you will keep enjoying it and share it with your friends. If there is one thing I know for sure about Cancer, whether it’s Stage 1 or Stage 4, you can’t do it alone. Until next time, Sue
July 27, 2016
Salutations! Today I will address the “but you don’t look sick” comment, or should I say compliment? While the people who say it to me may see it as a compliment, that is not at all how it feels.
What you say:
Are you sure the doctor is right? Do you really have Stage IV Cancer? I mean, you don’t look sick.
What I hear:
You can’t really be as sick as you say you are. Either you are faking it or you are slightly stupid and don’t understand what your doctor said.
And now for today’s lesson- here is how it should go:
You: You look pretty good today. How are you feeling?
What I hear: You look pretty good today. How are you feeling?
Winner, winner, chicken dinner. To prove just how well I can hide my illness let me share with you an interesting experience I had this week. Are you ready? I went to a psychic!
Now granted, the “psychic” was the Monday Night Psychic at your local bar type of psychic, but still, I was ready to be told my future! And all for the low price of $30! I couldn’t get my cash out fast enough. I’ve never been a big believer in psychics, and have very limited experience with any. (I went once with my sister some years ago and the psychic got nothing right about me and told my sister her aura was too dark to read. All my sister got from that visit was the suggestion that she should get her aura cleansed-for an additional fee). But surely the psychic at the bar would be able to tell my future. They wouldn’t have the psychic back every single week if she wasn’t good- right?
I went with a friend and when we checked in we were immediately escorted to the room with the psychics. It felt a bit like Oz, and the woman running the event (wearing circa 1970 clothes and dyed red hair to match) was the guardian of the gate, and out she came to say, “The Wizard will see you now”! The first surprise of the evening was that we had to choose which psychic to see. One was a “regular” woman psychic who read cards, the other was a man who read cards and was able to communicate with lost loved ones. Not having a big preference, my friend went to the man and I sat down with the woman (and her gin and tonic).
The next surprise came when the psychic began to lay out the cards to tell my future. My friend’s psychic used real tarot cards, as opposed to my psychic who used a well worn deck of cards from Harrah’s casino with a hole punched in the middle. Hmmm… my skepticism began right then. (Did my psychic forget her cards at home and have to borrow this deck from the bar? And if that was the case, wouldn’t you think since she was a psychic she would know ahead of time that she was going to forget the cards, thereby remembering to bring the correct cards with her???) She started by picking out which queen in the deck resembled me the best. She looked thoughtfully at my face and determined I was the Queen of Clubs. (Frankly, I felt a bit downhearted when she didn’t pick one of the red queens. Afterall, I did just recently spend $4.99 on a box of auburn hair dye and was hoping my investment would pay off in making me look like a real redhead.)
For the next 20 minutes the psychic flipped through the cards making random statements and predictions. Sometimes she would have me handle the cards with specific instructions; using just your left hand make three piles of cards, then, using only your right hand, choose one card from each of the piles, then, with your left hand, place the three cards on top of the three piles, now, using your right hand….and so on. My psychic provided a yellow legal pad and would instruct when something was important enough to write down. In her opinion, there were many “important” things.
In the end, she got nothing right. She gave lots of advice and made educated guesses, but without any help from me, she had nothing to offer. I had decided before I even sat down that I would not tell her about my life, nor about my Cancer. If she really is a psychic, she shouldn’t have to ask. She told me my health was great, except for the pain in my knees and ankles. Hmm.., I don’t have pain there, but maybe one day I will? Whenever I disagreed with one of her statements, she would cleverly turn it around. She commented “I see you have a lot of stomach issues.” I replied, “No, not really.” To which she answered, “Well don’t you sometimes have a stomach issue when certain foods disagree with you? That’s why you should be eating yogurt and taking probiotics. Write that down!”
At the end of the reading she asked if I had any questions for her. I asked what she saw in the future for my health. She confirmed again that I was in great health and there was no “scary” disease in my future. Well, if Stage IV Cancer isn’t scary, I don’t know what is. I went back to the bar to order a drink and wait for my friend. I looked at the flyer advertising the psychic and noted that at the bottom, in teeny, tiny print, were the words, “for entertainment purposes only”. Well that’s for sure. But now I knew that if even a psychic couldn’t tell by looking at me that I have Cancer, then certainly a random person on the street can’t either.
We all have preconceived ideas, and most people would agree that when you hear someone has Cancer you expect them to look sick. And by sick, I mean bald and dark circles under the eyes kind of sick. If it makes people feel any better, I did look like that when I had chemo for the first Cancer. But here is the big difference, the first time I had Cancer the treatment was harsh and exhausting and made me very ill. There was an endless stream of days when I couldn’t get off the couch and could barely make it to the bathroom in time to pray to the porcelain God. Chemo kicked my ass because the doctor was trying to cure me. This time around I am not nearly as sick from the chemo and hormone therapy I am on, because it is a much smaller dose of medicine.
Why, you ask? Why would they give me less drugs for a worse Cancer? Because they are no longer trying to cure me. Treatment for Metastatic Breast Cancer (MBC) is lifelong, and not meant to cure you. There is no cure for MBC, there is only treatment and managing the illness. The treatment focuses on the control of the disease and the quality of life. It’s finding the balance between enough medicine to keep the tumors from growing, but not so much medicine that I feel to sick to enjoy life. Finding that balance is a work in progress. Until next time, Sue
Salutations! Today I will address the “but you don’t look sick” comment, or should I say compliment? While the people who say it to me may see it as a compliment, that is not at all how it feels.
What you say:
Are you sure the doctor is right? Do you really have Stage IV Cancer? I mean, you don’t look sick.
What I hear:
You can’t really be as sick as you say you are. Either you are faking it or you are slightly stupid and don’t understand what your doctor said.
And now for today’s lesson- here is how it should go:
You: You look pretty good today. How are you feeling?
What I hear: You look pretty good today. How are you feeling?
Winner, winner, chicken dinner. To prove just how well I can hide my illness let me share with you an interesting experience I had this week. Are you ready? I went to a psychic!
Now granted, the “psychic” was the Monday Night Psychic at your local bar type of psychic, but still, I was ready to be told my future! And all for the low price of $30! I couldn’t get my cash out fast enough. I’ve never been a big believer in psychics, and have very limited experience with any. (I went once with my sister some years ago and the psychic got nothing right about me and told my sister her aura was too dark to read. All my sister got from that visit was the suggestion that she should get her aura cleansed-for an additional fee). But surely the psychic at the bar would be able to tell my future. They wouldn’t have the psychic back every single week if she wasn’t good- right?
I went with a friend and when we checked in we were immediately escorted to the room with the psychics. It felt a bit like Oz, and the woman running the event (wearing circa 1970 clothes and dyed red hair to match) was the guardian of the gate, and out she came to say, “The Wizard will see you now”! The first surprise of the evening was that we had to choose which psychic to see. One was a “regular” woman psychic who read cards, the other was a man who read cards and was able to communicate with lost loved ones. Not having a big preference, my friend went to the man and I sat down with the woman (and her gin and tonic).
The next surprise came when the psychic began to lay out the cards to tell my future. My friend’s psychic used real tarot cards, as opposed to my psychic who used a well worn deck of cards from Harrah’s casino with a hole punched in the middle. Hmmm… my skepticism began right then. (Did my psychic forget her cards at home and have to borrow this deck from the bar? And if that was the case, wouldn’t you think since she was a psychic she would know ahead of time that she was going to forget the cards, thereby remembering to bring the correct cards with her???) She started by picking out which queen in the deck resembled me the best. She looked thoughtfully at my face and determined I was the Queen of Clubs. (Frankly, I felt a bit downhearted when she didn’t pick one of the red queens. Afterall, I did just recently spend $4.99 on a box of auburn hair dye and was hoping my investment would pay off in making me look like a real redhead.)
For the next 20 minutes the psychic flipped through the cards making random statements and predictions. Sometimes she would have me handle the cards with specific instructions; using just your left hand make three piles of cards, then, using only your right hand, choose one card from each of the piles, then, with your left hand, place the three cards on top of the three piles, now, using your right hand….and so on. My psychic provided a yellow legal pad and would instruct when something was important enough to write down. In her opinion, there were many “important” things.
In the end, she got nothing right. She gave lots of advice and made educated guesses, but without any help from me, she had nothing to offer. I had decided before I even sat down that I would not tell her about my life, nor about my Cancer. If she really is a psychic, she shouldn’t have to ask. She told me my health was great, except for the pain in my knees and ankles. Hmm.., I don’t have pain there, but maybe one day I will? Whenever I disagreed with one of her statements, she would cleverly turn it around. She commented “I see you have a lot of stomach issues.” I replied, “No, not really.” To which she answered, “Well don’t you sometimes have a stomach issue when certain foods disagree with you? That’s why you should be eating yogurt and taking probiotics. Write that down!”
At the end of the reading she asked if I had any questions for her. I asked what she saw in the future for my health. She confirmed again that I was in great health and there was no “scary” disease in my future. Well, if Stage IV Cancer isn’t scary, I don’t know what is. I went back to the bar to order a drink and wait for my friend. I looked at the flyer advertising the psychic and noted that at the bottom, in teeny, tiny print, were the words, “for entertainment purposes only”. Well that’s for sure. But now I knew that if even a psychic couldn’t tell by looking at me that I have Cancer, then certainly a random person on the street can’t either.
We all have preconceived ideas, and most people would agree that when you hear someone has Cancer you expect them to look sick. And by sick, I mean bald and dark circles under the eyes kind of sick. If it makes people feel any better, I did look like that when I had chemo for the first Cancer. But here is the big difference, the first time I had Cancer the treatment was harsh and exhausting and made me very ill. There was an endless stream of days when I couldn’t get off the couch and could barely make it to the bathroom in time to pray to the porcelain God. Chemo kicked my ass because the doctor was trying to cure me. This time around I am not nearly as sick from the chemo and hormone therapy I am on, because it is a much smaller dose of medicine.
Why, you ask? Why would they give me less drugs for a worse Cancer? Because they are no longer trying to cure me. Treatment for Metastatic Breast Cancer (MBC) is lifelong, and not meant to cure you. There is no cure for MBC, there is only treatment and managing the illness. The treatment focuses on the control of the disease and the quality of life. It’s finding the balance between enough medicine to keep the tumors from growing, but not so much medicine that I feel to sick to enjoy life. Finding that balance is a work in progress. Until next time, Sue