October 26, 2016- Part 2
So friends, when I last wrote, you were left in suspense about my late night ER visit. Here is the rest of the story. I arrived at the ER of Little Company of Mary hospital (my oncologist works out of both the University of Chicago and Little Company) in record time. I signed in and, because I had chest pain, they took me back right away. The doctor from the Care Station had called ahead (in a panic) and they were expecting me. The nurse on duty was a multi-talented nurse, in that he took my history, then vitals, then drew blood and then did the ekg. Now one might think, Wow! That’s great that they have such cross trained nurses. The reality, however, was that he was really only good at one thing. His blood draw sucked (no vampire pun intended). I told him he had one more try and then I was asking for someone else. He was confused on the placement of the ekg leads, and had to manually check my blood pressure because the reading from the machine, 95/67, seemed wrong. He then took me to the X-ray guy.
Now the X-ray technician looked to be all of 18. Certainly he was older, but that’s what he looked like. While he was setting it all up for a chest x-ray I did mention to him that I have Stage 4 Breast Cancer, just so he would be prepared for what he would see. He said he was sorry to hear that, he seemed to not really know how to react to that. Anyway, a couple of clicks later I was done with the x-rays. As I was walking out he was looking at the x-ray. He called me over:
Tech: Whoa, do you want to see this? In an excited voice
Me: The chest x-ray? Knowing the tech is never suppose to let you see. Sure.
Tech: Look at that! You can see the tumor in the lung, and then the other smaller spots too. Look! It's like the tumor is a tree and these cool branches are coming out of it and spreading to other places.
Me: In my head- Does he realize he should not be excited about this?
Tech: I can’t believe this is a Stage 4.
Me: Meaning it’s worse or better then you thought?
Tech: I guess I thought a Stage 4 would look worse.
Me: Oh, well, that’s what it looks like.
Next up they put me in a private room where we proceeded to wait for a very long time. But that’s how an ER is, so no big deal. Eventually a new nurse came to start an IV because they ordered a CT scan with and without contrast. She was not very good at it, but it finally got in the “right spot”. Some time later, another nurse came in to put in a new IV. I wasn’t sure why we couldn’t use the one the other nurse had already done. The new nurse said the other one wasn’t done very well so he needed to do a new one in my other arm.
Me: Oh, ok. Well are you taking this one out then?
New Nurse: Well, no. We might need 2 IV’s.
Me: Why?
New Nurse: Just in case.
Me: Well you said the first one isn’t done right so shouldn’t you just take it out?
New Nurse: We better just leave it in.
He then put in a new IV and he was not very gentle either. Where the heck were all the phlebotomists????
Eventually I went for the CT scan and went back to wait in my ER cubicle. We waited about an hour and the new nurse came back and said that the CT scan showed no pulmonary embolism and that the doctor would be in soon to release me. 1 hour and 40 minutes later the clipboard doctor returned (he had 7 clipboards in his hands, one of them mine. It appeared that he was the only physician on staff that night). The doctor said my pain was probably caused by pleurisy, meaning my lung with the tumor was swollen and the lining was irritated. He wrote me a prescription and sent me home. Finally! Six hours total, so not as bad as it could have been. On my way out I asked the nurse for a copy of the CT results, so he printed one out for me and off we went.
My daughter Kara and her friend Eric were driving me home. (They had come around 10 to relieve my friend Noreen who had taken me). It was just after 2 in the morning and we were all exhausted. I reached over to put on the light in the car so I could read the results. And there it was. The numbers were jumping out at me like a flashing, neon sign. The size of the tumor in my lung had grown, the Cancer was still progressing. So there we were, three overtired, nonsensical, goofy people, finding out my Cancer has gotten worse just in the last 6 weeks. Seriously??? It’s still growing? UGH. I hate this. Meanwhile, let’s keep driving home as if our world didn’t just collapse again. I wanted to scream. But at the same time I felt numb to it all.
When we got home I went and got my black binder that has all of my Cancer info and results in. (Sidebar- perhaps I should get a prettier, happier 3 ring binder instead of the ominous black one. Even more, perhaps I could name the binder. You know, something clever and funny. Something that will at least have me crack a small smile when I grab it. I have an idea; YOU should name my folder. I am now accepting ideas for the name of the black folder. First prize will, of course, win the naming right, and also the bragging rights, and perhaps even be selected to accompany me on my next ER visit!) Back to the dreaded numbers. To recap:
October 31, 2014- Congrats! You are Cancer free. Go forth and live
your life. You beat the beast. You are cured! (Why
was I not suspicious?? If only I knew then what I
know now….)
April 28, 2016- Metastatic tumor in right lung: 2.0 x 1.7cm
Sept. 8, 2016- Tumor in right lung: 2.3 x 2.8 cm
October 18, 2016- Tumor in right lung: 3.2 x 2.8 cm
That, my friends, is what we call Progression. It’s too soon to know if the new drug, Xeloda, is working yet. We have to wait 3 cycles until I get a new scan. That will be the week after Thanksgiving. Until then, I just keep on taking the 8 pills a day and put up with all the side effects and hope and pray for the best outcome.
I try to focus on the positive things in my life. I am truly looking forward to Thanksgiving this year. With Thea and Bernard coming from Holland, and the kids all being home, it will be great. I feel like I have so much to be thankful for, despite the dreaded Cancer. I remember what one of the seniors at my church, Bette, said to me once. She said, “Imagine if God said you could walk up to the altar today with all of your problems in one basket. You can lay the basket down and be rid of those troubles. But, in return, you have to take one of the baskets another person left at the altar. Would you do it? Would you be willing to trade all of your troubles for a basket filled with unknown troubles?” Bette was a very wise woman. Even knowing how heavy my basket is right now, I would not want to trade it. None of us really ever knows the burdens someone else is carrying. What’s that saying? “Be kind. Everyone you see is fighting a battle.” So true. Until next time, Sue
So friends, when I last wrote, you were left in suspense about my late night ER visit. Here is the rest of the story. I arrived at the ER of Little Company of Mary hospital (my oncologist works out of both the University of Chicago and Little Company) in record time. I signed in and, because I had chest pain, they took me back right away. The doctor from the Care Station had called ahead (in a panic) and they were expecting me. The nurse on duty was a multi-talented nurse, in that he took my history, then vitals, then drew blood and then did the ekg. Now one might think, Wow! That’s great that they have such cross trained nurses. The reality, however, was that he was really only good at one thing. His blood draw sucked (no vampire pun intended). I told him he had one more try and then I was asking for someone else. He was confused on the placement of the ekg leads, and had to manually check my blood pressure because the reading from the machine, 95/67, seemed wrong. He then took me to the X-ray guy.
Now the X-ray technician looked to be all of 18. Certainly he was older, but that’s what he looked like. While he was setting it all up for a chest x-ray I did mention to him that I have Stage 4 Breast Cancer, just so he would be prepared for what he would see. He said he was sorry to hear that, he seemed to not really know how to react to that. Anyway, a couple of clicks later I was done with the x-rays. As I was walking out he was looking at the x-ray. He called me over:
Tech: Whoa, do you want to see this? In an excited voice
Me: The chest x-ray? Knowing the tech is never suppose to let you see. Sure.
Tech: Look at that! You can see the tumor in the lung, and then the other smaller spots too. Look! It's like the tumor is a tree and these cool branches are coming out of it and spreading to other places.
Me: In my head- Does he realize he should not be excited about this?
Tech: I can’t believe this is a Stage 4.
Me: Meaning it’s worse or better then you thought?
Tech: I guess I thought a Stage 4 would look worse.
Me: Oh, well, that’s what it looks like.
Next up they put me in a private room where we proceeded to wait for a very long time. But that’s how an ER is, so no big deal. Eventually a new nurse came to start an IV because they ordered a CT scan with and without contrast. She was not very good at it, but it finally got in the “right spot”. Some time later, another nurse came in to put in a new IV. I wasn’t sure why we couldn’t use the one the other nurse had already done. The new nurse said the other one wasn’t done very well so he needed to do a new one in my other arm.
Me: Oh, ok. Well are you taking this one out then?
New Nurse: Well, no. We might need 2 IV’s.
Me: Why?
New Nurse: Just in case.
Me: Well you said the first one isn’t done right so shouldn’t you just take it out?
New Nurse: We better just leave it in.
He then put in a new IV and he was not very gentle either. Where the heck were all the phlebotomists????
Eventually I went for the CT scan and went back to wait in my ER cubicle. We waited about an hour and the new nurse came back and said that the CT scan showed no pulmonary embolism and that the doctor would be in soon to release me. 1 hour and 40 minutes later the clipboard doctor returned (he had 7 clipboards in his hands, one of them mine. It appeared that he was the only physician on staff that night). The doctor said my pain was probably caused by pleurisy, meaning my lung with the tumor was swollen and the lining was irritated. He wrote me a prescription and sent me home. Finally! Six hours total, so not as bad as it could have been. On my way out I asked the nurse for a copy of the CT results, so he printed one out for me and off we went.
My daughter Kara and her friend Eric were driving me home. (They had come around 10 to relieve my friend Noreen who had taken me). It was just after 2 in the morning and we were all exhausted. I reached over to put on the light in the car so I could read the results. And there it was. The numbers were jumping out at me like a flashing, neon sign. The size of the tumor in my lung had grown, the Cancer was still progressing. So there we were, three overtired, nonsensical, goofy people, finding out my Cancer has gotten worse just in the last 6 weeks. Seriously??? It’s still growing? UGH. I hate this. Meanwhile, let’s keep driving home as if our world didn’t just collapse again. I wanted to scream. But at the same time I felt numb to it all.
When we got home I went and got my black binder that has all of my Cancer info and results in. (Sidebar- perhaps I should get a prettier, happier 3 ring binder instead of the ominous black one. Even more, perhaps I could name the binder. You know, something clever and funny. Something that will at least have me crack a small smile when I grab it. I have an idea; YOU should name my folder. I am now accepting ideas for the name of the black folder. First prize will, of course, win the naming right, and also the bragging rights, and perhaps even be selected to accompany me on my next ER visit!) Back to the dreaded numbers. To recap:
October 31, 2014- Congrats! You are Cancer free. Go forth and live
your life. You beat the beast. You are cured! (Why
was I not suspicious?? If only I knew then what I
know now….)
April 28, 2016- Metastatic tumor in right lung: 2.0 x 1.7cm
Sept. 8, 2016- Tumor in right lung: 2.3 x 2.8 cm
October 18, 2016- Tumor in right lung: 3.2 x 2.8 cm
That, my friends, is what we call Progression. It’s too soon to know if the new drug, Xeloda, is working yet. We have to wait 3 cycles until I get a new scan. That will be the week after Thanksgiving. Until then, I just keep on taking the 8 pills a day and put up with all the side effects and hope and pray for the best outcome.
I try to focus on the positive things in my life. I am truly looking forward to Thanksgiving this year. With Thea and Bernard coming from Holland, and the kids all being home, it will be great. I feel like I have so much to be thankful for, despite the dreaded Cancer. I remember what one of the seniors at my church, Bette, said to me once. She said, “Imagine if God said you could walk up to the altar today with all of your problems in one basket. You can lay the basket down and be rid of those troubles. But, in return, you have to take one of the baskets another person left at the altar. Would you do it? Would you be willing to trade all of your troubles for a basket filled with unknown troubles?” Bette was a very wise woman. Even knowing how heavy my basket is right now, I would not want to trade it. None of us really ever knows the burdens someone else is carrying. What’s that saying? “Be kind. Everyone you see is fighting a battle.” So true. Until next time, Sue
October 22, 2016
Welcome back, friends! Where have you all been hiding? Oh, wait, I’m the one who has been away. Sorry for the long lapse of time, but things here in Cancerland have been quite hectic. We have so much to catch up on, too much for just one blog entry, so I will focus this entry on the number one question I have been asked, and that is, how are you? (Though I secretly hoped people would ask, Do you need more mini bundt cakes? Luckily my best friend Dee just dropped off a dozen “bundtinis” the other day. Aren’t best friends great?? Side note: Dee and I have had a long standing agreement that dates back to BC, before Cancer, that whoever dies first would come back to “visit/haunt” the other person by randomly making kitchen items drop to the floor. I know, we are weird. The full extent of our weirdness can be seen above in the “ghost friend” picture).
Other popular questions were:
“Does this mean the tumor is bigger and the Cancer is spreading faster than you thought?”
“Are you going to go on a clinical trial now?”
And my personal favorite,
“Well if you switch to the holistic approach you would be better by now instead of getting worse by putting all that poison in your body.”
Wow! Why didn’t I think of that???
Back to reality. I started my new oral chemo, Xeloda. It is a course of 14 days on and 7 days off. There are a variety of interesting side effects with Xeloda and I have already experienced a few of them. The most common side effect that a huge percentage of people get is something called Hand Foot Syndrome (HFS). Picture the palms of your hands and soles of your feet getting red and irritated and eventually getting blisters and peeling skin. Pleasant, right? That side effect has been very mild for me so far. But wait, before we celebrate and hang up a W flag, my oncologist told me that the HFS gets worse on the off week, and continues to get worse as the medicine builds up in my system. Shoot! I thought I was going to escape that one.
The main side effect I am getting right now is...drum roll please...the sudden, urgent, overwhelming need to find a bathroom NOW. Yep, diarrhea. Ewwww. I know, gross. But hey, that’s what it is. No one ever said Cancer was pretty. (Oh wait, I take that back. Plenty of companies are painting my breast Cancer pink and putting a ribbon on it. I almost forgot, breast Cancer really can be pretty! Just today I found a pretty pumpkin at Jewel painted pink with a pink ribbon on it! Wow- I was overwhelmed with joy. Not only was my Cancer represented by a pretty pink ribbon, it was now an awesome pink pumpkin as well. And maybe, if I’m really lucky and believe that all the top breast Cancer charities are going to help me, by both helping pay for my medicine and finding a cure, then maybe, just maybe, that pink pumpkin will turn into a beautiful glass coach and I will run away with my Cancer free Prince Charming. Please tell me you know the sarcasm meter is in overdrive right now, right?)
Where was I? Oh yes, the ummmm, bathroom issue. So Xeloda is not agreeing with my stomach and that became very apparent this past week, and in a hurry. I was looking forward to going to a lecture with my friend Kathy on the benefits of cannabis in breast Cancer patients. (Side note: Neither Kathy nor myself have a history of marijuana use, but we both had read many articles of how it helps for both treatment of the disease and for treatment of the side effects. That said, we did still wonder if the presentation would include samples like they have at Costco on the weekends). Alas, it wasn’t to be. We never found out because ten minutes into the ride I told Kathy that she needed to pull over and find a bathroom NOW. As luck would have it, there were two immediate choices. A gas station or a Starbucks. Picturing the distinct possibility of me lying on the bathroom floor, we chose the Starbucks. After a miserable 23 minutes I came to the conclusion that Starbucks does indeed keep a clean bathroom. Kathy drove me home while I laid in the back seat of her car.(She later dropped off a gift bag on my front porch with all sorts of comfort items, including new super soft fleece pajamas! You never feel quite as sick if you are wearing new pajamas. Thank you, Kathy). Now some may say that this must mean I am not meant to pursue the use of medical marijuana, but the truth is it may mean just the opposite. Maybe if I had it, I would not have gotten sick. I don’t really know if it would help or not, but my oncologist and I are looking at a variety of treatment options at this point. Remember, it’s all about the quality of life for me at this point. And I am in no hurry to inspect any other bathroom floors!
The next big adventure happened a few days after the “Starbucks incident”. I woke up at 7 in the morning with severe chest pain. Great, I thought. Now what? I took 2 Vicodin and tried to go back to sleep. 12 hours later I was still having horrible chest pain and decided it was time for a doctor to see me. My friend Noreen took me to the local doc in a box place and boy was that an interesting experience! There was no one in the waiting room and we got there about an hour before they were closing. They took me right back and started to hook up an ekg. Then the door opened and in walked….well, I thought at first she was maybe the girl who looks at your insurance card because she didn’t appear very organized or professional. Turns out she was the doctor!
Doctor: So what brings you here today? Chest pain? (Wow, a psychic as well!)
Me: Yes. I have Stage 4 Cancer that has metastasized to my lung.
Doctor and Nurse: LOUDEST JOINT GASP EVER followed by incoherent mumblings of despair.
Doctor: We need to hurry this along because there is a very big concern that you could have a pulmonary embolism. We can do the ekg here but you need to go directly to the hospital. I will call an ambulance. (The phrase "godirectlytothehospital" was said in one long breath by the way).
Me: Thinking: Whoa, slow your roll lady!
Speaking: That’s okay. We can get to the hospital. I won’t need an ambulance.
Doctor: Looking at ekg results. Oh, these are not normal. It doesn’t show a heart attack, but it’s not
normal. Are you sure you don’t want the ambulance?
Me: Thinking: Sheesh, calm down. Have you never met a Stage 4 Metavivor? We are fierce!
Speaking: No, we will be fine.
Doctor: Well okay. But if anything happens along the way you should pull over and call 911.
Me: Thinking: Sure, like that would happen. We would get to the hospital before the ambulance
would find us.
Speaking: Okay, we will.
Nurse: Walks in quickly and hands me the discharge paper, which reads, in all capital letters,
GO TO HOSPITAL NOW
And so, we went. To be continued….
Some things are worth waiting for, and the rest of this story is one of them! Tune in next time to find out what golden rule the still wet behind the ears x-ray technician broke. Until next time, Sue
Welcome back, friends! Where have you all been hiding? Oh, wait, I’m the one who has been away. Sorry for the long lapse of time, but things here in Cancerland have been quite hectic. We have so much to catch up on, too much for just one blog entry, so I will focus this entry on the number one question I have been asked, and that is, how are you? (Though I secretly hoped people would ask, Do you need more mini bundt cakes? Luckily my best friend Dee just dropped off a dozen “bundtinis” the other day. Aren’t best friends great?? Side note: Dee and I have had a long standing agreement that dates back to BC, before Cancer, that whoever dies first would come back to “visit/haunt” the other person by randomly making kitchen items drop to the floor. I know, we are weird. The full extent of our weirdness can be seen above in the “ghost friend” picture).
Other popular questions were:
“Does this mean the tumor is bigger and the Cancer is spreading faster than you thought?”
“Are you going to go on a clinical trial now?”
And my personal favorite,
“Well if you switch to the holistic approach you would be better by now instead of getting worse by putting all that poison in your body.”
Wow! Why didn’t I think of that???
Back to reality. I started my new oral chemo, Xeloda. It is a course of 14 days on and 7 days off. There are a variety of interesting side effects with Xeloda and I have already experienced a few of them. The most common side effect that a huge percentage of people get is something called Hand Foot Syndrome (HFS). Picture the palms of your hands and soles of your feet getting red and irritated and eventually getting blisters and peeling skin. Pleasant, right? That side effect has been very mild for me so far. But wait, before we celebrate and hang up a W flag, my oncologist told me that the HFS gets worse on the off week, and continues to get worse as the medicine builds up in my system. Shoot! I thought I was going to escape that one.
The main side effect I am getting right now is...drum roll please...the sudden, urgent, overwhelming need to find a bathroom NOW. Yep, diarrhea. Ewwww. I know, gross. But hey, that’s what it is. No one ever said Cancer was pretty. (Oh wait, I take that back. Plenty of companies are painting my breast Cancer pink and putting a ribbon on it. I almost forgot, breast Cancer really can be pretty! Just today I found a pretty pumpkin at Jewel painted pink with a pink ribbon on it! Wow- I was overwhelmed with joy. Not only was my Cancer represented by a pretty pink ribbon, it was now an awesome pink pumpkin as well. And maybe, if I’m really lucky and believe that all the top breast Cancer charities are going to help me, by both helping pay for my medicine and finding a cure, then maybe, just maybe, that pink pumpkin will turn into a beautiful glass coach and I will run away with my Cancer free Prince Charming. Please tell me you know the sarcasm meter is in overdrive right now, right?)
Where was I? Oh yes, the ummmm, bathroom issue. So Xeloda is not agreeing with my stomach and that became very apparent this past week, and in a hurry. I was looking forward to going to a lecture with my friend Kathy on the benefits of cannabis in breast Cancer patients. (Side note: Neither Kathy nor myself have a history of marijuana use, but we both had read many articles of how it helps for both treatment of the disease and for treatment of the side effects. That said, we did still wonder if the presentation would include samples like they have at Costco on the weekends). Alas, it wasn’t to be. We never found out because ten minutes into the ride I told Kathy that she needed to pull over and find a bathroom NOW. As luck would have it, there were two immediate choices. A gas station or a Starbucks. Picturing the distinct possibility of me lying on the bathroom floor, we chose the Starbucks. After a miserable 23 minutes I came to the conclusion that Starbucks does indeed keep a clean bathroom. Kathy drove me home while I laid in the back seat of her car.(She later dropped off a gift bag on my front porch with all sorts of comfort items, including new super soft fleece pajamas! You never feel quite as sick if you are wearing new pajamas. Thank you, Kathy). Now some may say that this must mean I am not meant to pursue the use of medical marijuana, but the truth is it may mean just the opposite. Maybe if I had it, I would not have gotten sick. I don’t really know if it would help or not, but my oncologist and I are looking at a variety of treatment options at this point. Remember, it’s all about the quality of life for me at this point. And I am in no hurry to inspect any other bathroom floors!
The next big adventure happened a few days after the “Starbucks incident”. I woke up at 7 in the morning with severe chest pain. Great, I thought. Now what? I took 2 Vicodin and tried to go back to sleep. 12 hours later I was still having horrible chest pain and decided it was time for a doctor to see me. My friend Noreen took me to the local doc in a box place and boy was that an interesting experience! There was no one in the waiting room and we got there about an hour before they were closing. They took me right back and started to hook up an ekg. Then the door opened and in walked….well, I thought at first she was maybe the girl who looks at your insurance card because she didn’t appear very organized or professional. Turns out she was the doctor!
Doctor: So what brings you here today? Chest pain? (Wow, a psychic as well!)
Me: Yes. I have Stage 4 Cancer that has metastasized to my lung.
Doctor and Nurse: LOUDEST JOINT GASP EVER followed by incoherent mumblings of despair.
Doctor: We need to hurry this along because there is a very big concern that you could have a pulmonary embolism. We can do the ekg here but you need to go directly to the hospital. I will call an ambulance. (The phrase "godirectlytothehospital" was said in one long breath by the way).
Me: Thinking: Whoa, slow your roll lady!
Speaking: That’s okay. We can get to the hospital. I won’t need an ambulance.
Doctor: Looking at ekg results. Oh, these are not normal. It doesn’t show a heart attack, but it’s not
normal. Are you sure you don’t want the ambulance?
Me: Thinking: Sheesh, calm down. Have you never met a Stage 4 Metavivor? We are fierce!
Speaking: No, we will be fine.
Doctor: Well okay. But if anything happens along the way you should pull over and call 911.
Me: Thinking: Sure, like that would happen. We would get to the hospital before the ambulance
would find us.
Speaking: Okay, we will.
Nurse: Walks in quickly and hands me the discharge paper, which reads, in all capital letters,
GO TO HOSPITAL NOW
And so, we went. To be continued….
Some things are worth waiting for, and the rest of this story is one of them! Tune in next time to find out what golden rule the still wet behind the ears x-ray technician broke. Until next time, Sue
October 10, 2016
What would you do if you were told you have a terminal illness with an average life expectancy of 18-24 months from the time of diagnosis? Would you make big changes in your life? Would you do things differently? Quit your job? Try to strike a bargain with God? Hit the road? Hang out on a beach in Hawaii until you run out of money? It is an interesting question to ponder, until it really happens. (Though I would have preferred finding out the answer to “What would I do if I won 40 million dollars in the lottery”.) Alas, I am looking for the answer to the first question. And I don’t have that answer- exactly. I have ideas, plans, thoughts...but not a hardcore answer yet.
I think one reason I haven’t really acted on the news much is that if I start living as if I only have two years or less, well, let’s face it, that would be too depressing. It’s not at all like you see in the movies. It is not a picnic. It’s not me and my best friend sitting in our Adirondack chairs sipping wine and watching the sunset over the Pacific ocean- like the movie Beaches. Cancer is not pretty. It’s not pink, it’s not a ribbon, and it’s not a beautiful, melodramatic way to die.
Despite the risk of throwing myself into a pit of despair, I did amend my Bucket List. Most people these days have a Bucket List, but let me tell you, it takes on a whole new meaning when an expiration date is attached to it. Now, before I go any further I would like to say to those of you who are thinking “Well Sue is never going to get better and beat this Cancer with that attitude!” You are right. I will never beat this Cancer. Period. The end. I will have it for the rest of my life, whether I wake up each day and look for rainbows and butterflies, or if I drag myself out of bed and to the couch at noon and sit all day watching bad Lifetime movies and eating delicious food from Nothing Bundt Cakes. I will not “beat” this Cancer. I am hoping the drugs I am on will decrease the tumors, stop the spread, and make me NED (No Evidence of Disease). But even if I get to NED, it’s never going to be out of my system entirely. It’s there and it isn’t leaving. With any luck, it may hide for awhile and give me more time, or it may just keep spreading. We have no way of knowing. And that, my friends, is the kicker. The hard part about starting to actually do the things on your Bucket List is that by starting it, you are acknowledging that your time on this Earth is, indeed, not infinite. It has an end date.
The next problem with starting to do things from your Bucket List is the money. Let’s face it, most of us have some pretty extravagant things on our list. And so the editing begins. Unless I suddenly win the lotto, I need to make some changes. (Side note on money- did you know that once you are approved for Social Security Disability- which you are automatically qualified for if you have Stage 4 Cancer- the government makes you wait 5 months before they will pay you??? They say that it proves you can’t work. And during my 5 month wait, what exactly do I live off of? Oh wait- the Short Term Disability I have been paying for! Right? Wrong! My insurance company disqualified me because my Cancer is a “pre-existing condition”. But wait, I said. I have been in remission for 17 months! This is a new Cancer, not the same Cancer I was treated for. Oh, well, you’ve been taking Tamoxifen, an anti-cancer drug, so you don’t qualify. Sorry. Ahhhhhhhhhhh) Back to our originally scheduled topic.
The Bucket List. There are big, costly things, like traveling to Europe with my kids. And buying a lake house, so that when I am gone my three kids will have a place to come together, to have their kids play together and make beautiful, funny, memories. There are little things on my list too. I want to see a cranberry bog, tap maple syrup from a tree, go on a sleigh ride, learn to blow glass, and embroider Christmas stockings for all of my future grandkids. There are sad things on my list too. I want to be a grandma (hint hint to my daughter Kaitlin who is married!) I want to see Ryan get the full time job he wants teaching at the University of Alaska where he went for his Masters degree. I want to be at Kara’s wedding. Those are Bucket List items I have no control over. And yet, the time has come. I need to start making the list happen.
It isn’t so much about finishing the list, it’s about making memories with those items on the list. Maybe I won’t be able to buy the lake house, but maybe instead we will find a lake house to rent for a few weeks and just spend time together. Watching sunsets, playing Boggle, watching old family movies, and just being a family. That’s the biggest thing on my Bucket List- being with my kids. I would gladly give up all of the other items on the Bucket List if I could just have more time with my kids. A long road trip together would be perfect. I’ll get started on that.
I will end on a good note today. One of my Bucket List items is coming true in just 40 days. My best friend Thea, the one in Holland, will be coming with her husband Bernard to spend Thanksgiving with us. This has been on mine and Thea’s Bucket List for a long time. They don’t celebrate Thanksgiving in Holland, and Thea has said that when watching movies and tv shows from America she has always thought Thanksgiving looks like a great holiday. We were hoping to do it next year, which will be the 30th Anniversary of when we became penpals. But with the Cancer coming back we decided to celebrate this year. We are both beyond excited. Thea and Bernard coming here for Thanksgiving truly keeps me focused on the many things I have to be thankful for. Sometimes we can lose sight of the good things in our lives when something bad overwhelms us. But we can find our way back to the happy moments and the things we are thankful for, if we try. I still have bad days, and that’s okay, as long as I still find something good in each day. Until next time, Sue
p.s. If you haven't already done so, I highly recommend trying the caramel apple mimosas I talked about on my Facebook. My good friend Jen invited me and Kara over for dinner last week and guess what??? Yep- she made them for us. And boy were they delicious!
What would you do if you were told you have a terminal illness with an average life expectancy of 18-24 months from the time of diagnosis? Would you make big changes in your life? Would you do things differently? Quit your job? Try to strike a bargain with God? Hit the road? Hang out on a beach in Hawaii until you run out of money? It is an interesting question to ponder, until it really happens. (Though I would have preferred finding out the answer to “What would I do if I won 40 million dollars in the lottery”.) Alas, I am looking for the answer to the first question. And I don’t have that answer- exactly. I have ideas, plans, thoughts...but not a hardcore answer yet.
I think one reason I haven’t really acted on the news much is that if I start living as if I only have two years or less, well, let’s face it, that would be too depressing. It’s not at all like you see in the movies. It is not a picnic. It’s not me and my best friend sitting in our Adirondack chairs sipping wine and watching the sunset over the Pacific ocean- like the movie Beaches. Cancer is not pretty. It’s not pink, it’s not a ribbon, and it’s not a beautiful, melodramatic way to die.
Despite the risk of throwing myself into a pit of despair, I did amend my Bucket List. Most people these days have a Bucket List, but let me tell you, it takes on a whole new meaning when an expiration date is attached to it. Now, before I go any further I would like to say to those of you who are thinking “Well Sue is never going to get better and beat this Cancer with that attitude!” You are right. I will never beat this Cancer. Period. The end. I will have it for the rest of my life, whether I wake up each day and look for rainbows and butterflies, or if I drag myself out of bed and to the couch at noon and sit all day watching bad Lifetime movies and eating delicious food from Nothing Bundt Cakes. I will not “beat” this Cancer. I am hoping the drugs I am on will decrease the tumors, stop the spread, and make me NED (No Evidence of Disease). But even if I get to NED, it’s never going to be out of my system entirely. It’s there and it isn’t leaving. With any luck, it may hide for awhile and give me more time, or it may just keep spreading. We have no way of knowing. And that, my friends, is the kicker. The hard part about starting to actually do the things on your Bucket List is that by starting it, you are acknowledging that your time on this Earth is, indeed, not infinite. It has an end date.
The next problem with starting to do things from your Bucket List is the money. Let’s face it, most of us have some pretty extravagant things on our list. And so the editing begins. Unless I suddenly win the lotto, I need to make some changes. (Side note on money- did you know that once you are approved for Social Security Disability- which you are automatically qualified for if you have Stage 4 Cancer- the government makes you wait 5 months before they will pay you??? They say that it proves you can’t work. And during my 5 month wait, what exactly do I live off of? Oh wait- the Short Term Disability I have been paying for! Right? Wrong! My insurance company disqualified me because my Cancer is a “pre-existing condition”. But wait, I said. I have been in remission for 17 months! This is a new Cancer, not the same Cancer I was treated for. Oh, well, you’ve been taking Tamoxifen, an anti-cancer drug, so you don’t qualify. Sorry. Ahhhhhhhhhhh) Back to our originally scheduled topic.
The Bucket List. There are big, costly things, like traveling to Europe with my kids. And buying a lake house, so that when I am gone my three kids will have a place to come together, to have their kids play together and make beautiful, funny, memories. There are little things on my list too. I want to see a cranberry bog, tap maple syrup from a tree, go on a sleigh ride, learn to blow glass, and embroider Christmas stockings for all of my future grandkids. There are sad things on my list too. I want to be a grandma (hint hint to my daughter Kaitlin who is married!) I want to see Ryan get the full time job he wants teaching at the University of Alaska where he went for his Masters degree. I want to be at Kara’s wedding. Those are Bucket List items I have no control over. And yet, the time has come. I need to start making the list happen.
It isn’t so much about finishing the list, it’s about making memories with those items on the list. Maybe I won’t be able to buy the lake house, but maybe instead we will find a lake house to rent for a few weeks and just spend time together. Watching sunsets, playing Boggle, watching old family movies, and just being a family. That’s the biggest thing on my Bucket List- being with my kids. I would gladly give up all of the other items on the Bucket List if I could just have more time with my kids. A long road trip together would be perfect. I’ll get started on that.
I will end on a good note today. One of my Bucket List items is coming true in just 40 days. My best friend Thea, the one in Holland, will be coming with her husband Bernard to spend Thanksgiving with us. This has been on mine and Thea’s Bucket List for a long time. They don’t celebrate Thanksgiving in Holland, and Thea has said that when watching movies and tv shows from America she has always thought Thanksgiving looks like a great holiday. We were hoping to do it next year, which will be the 30th Anniversary of when we became penpals. But with the Cancer coming back we decided to celebrate this year. We are both beyond excited. Thea and Bernard coming here for Thanksgiving truly keeps me focused on the many things I have to be thankful for. Sometimes we can lose sight of the good things in our lives when something bad overwhelms us. But we can find our way back to the happy moments and the things we are thankful for, if we try. I still have bad days, and that’s okay, as long as I still find something good in each day. Until next time, Sue
p.s. If you haven't already done so, I highly recommend trying the caramel apple mimosas I talked about on my Facebook. My good friend Jen invited me and Kara over for dinner last week and guess what??? Yep- she made them for us. And boy were they delicious!
October 4, 2016
Remember when you were little and how you loved to play Hide-n-Seek? Sometimes it would be out in the yard or from streetlight to streetlight or in the house in the winter. It was a lot of fun and we never got tired of it. As adults, I think we all still play the game, just in a different way. While we don’t physically hide, (usually- though I have in fact taken to hiding behind the Mountain Dew display at Jewel when I spot someone I don't feel like talking to), we do play a mental game of Hide-n-Seek. We hide our feelings or opinions or beliefs from others, in fear that we may be judged or ridiculed for what we feel and believe. We also take on the role of a seeker- trying to find people who think the way you do, so you can experience that warm, fuzzy feeling of belonging to something that is larger than yourself. The big question you need to ask yourself is this: when do I hide and when do I seek?
The first time I was fighting Cancer (2014) I was more of a hider. While outwardly people could tell by looking at me that I had Cancer (since I was bald and sick looking), I didn’t share the struggle with very many people. I didn’t want to freak people out, but also I didn’t want people to think I was weak and needed help. Even though I did need help, it was hard to ask for it. Part of the reason, I can see now, is that by admitting I needed help, it made the Cancer more real, and therefore, scarier. I remember wanting to hide when I would see someone I knew at the grocery store or somewhere. I didn’t want to answer questions. And besides, it was almost always awkward. People didn’t know what to say, and I didn’t know what to answer. So, I hid.
This time around, I am not hiding anymore. I have become a seeker. I seek to tell people about MBC, because all the ribbons and awareness campaigns in the world don’t really give much information about the deadliest form of Breast Cancer. The only Breast Cancer that kills. People don’t die from Stage 1 Breast Cancer (which is what I had in 2014). People die when the Cancer spreads (metastasizes) to other parts of the body. (check out my Facebook for more "think before you pink" information).
But I am not just seeking to share medical knowledge. I find I am also seeking out people who I can find comfort with. People who are compassionate and make me feel...happy. People that are open to hearing the often scary, ghastly, horrible, ugly saga about my Cancer. And you know what? It has been a lot easier to find these people than I ever expected it to be. Sometimes the person I let in is someone I already know well, but other times it has been more of a surprise, like a hidden gem. Like finding a super cool toy inside the Cracker Jack box. Someone who has been more on the fringe of my life, but now I have bonded with them in a way I never anticipated. It doesn't take much to make someone feel loved, and I have been blessed with finding new people who brighten my life and help lessen my load. I have found that by becoming a seeker, instead of a hider, I have opened a door to my heart and have let people in. And it feels great. It feels, right. Don’t get me wrong, there are still plenty of days where I feel like hiding, and sometimes, on a sad and gloomy day, I do hide. But all of us do. You don’t have to have Cancer to want a hiding day. We all have days where we hide. We hide from others, we hide from truths that we are not ready to handle, and we often hide from ourselves. It’s hard. Life can be hard. But life can also be beautiful, if you let it be.
You know the bible verse that has “seek and you will find” in it? I think most of us are familiar with that saying. But do you know the whole verse? It’s about so much more than just seeking and finding. “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” Matthew 7:7. I have always felt that the orders of the actions in this verse intensify as it goes on. Asking- a somewhat simple act, a bit humbling. Seeking- something that you need to delve into a bit more, you need to know what it is you are seeking. Knocking- you are there at the door of the thing you are asking for, the thing you are seeking, the thing you need. It’s time to act- it’s time to knock. It may take great courage to get to that part, but you can do it. You can find it within yourself. Take the chance, put yourself out there, knock on that door! Heck, break the door down if you need to!
I have gone through all three of those stages during the last two weeks while waiting to hear from my oncologist about what my new treatment will be. I asked, I sought, and then I knocked (well, actually I called, but you know what I mean). And here is the answer I received. I started a new oral chemotherapy drug yesterday called Xeloda. I take 8 pills a day, 12 hours apart, so that the drug will continually be in my system. It has a lot of unpleasant, but common, side effects. I am going to try my best to have the power of positive thinking and will away the possible side effects. I take the drug for 14 days on, then 7 days off. After three months I will have another scan to check the state of my tumor and lymph nodes. The three month wait is pretty scary, wondering the whole time if the Cancer is growing or not. I am truly hoping this is the drug that will work. I keep praying for that, and I hope God answers "Yes"! I am reminded of something a favorite author, Bob Goff, said in his book, Love Does; "I use to think God wouldn't talk to me, but now I know I'm just selective with what I choose to hear." I am hoping to hear a "yes, it works", but am also prepared for a "no, not this one" answer too. I do worry a bit though, if after three months of this new drug the scan comes back with good results, how will they be able to tell if it was the drugs that worked, or the daily caramel apple eating? Hmmmm (check out my Facebook (Suz Fetta Fleharty) for a delicious recipe for caramel apple mimosas!) Until next time, Sue
Remember when you were little and how you loved to play Hide-n-Seek? Sometimes it would be out in the yard or from streetlight to streetlight or in the house in the winter. It was a lot of fun and we never got tired of it. As adults, I think we all still play the game, just in a different way. While we don’t physically hide, (usually- though I have in fact taken to hiding behind the Mountain Dew display at Jewel when I spot someone I don't feel like talking to), we do play a mental game of Hide-n-Seek. We hide our feelings or opinions or beliefs from others, in fear that we may be judged or ridiculed for what we feel and believe. We also take on the role of a seeker- trying to find people who think the way you do, so you can experience that warm, fuzzy feeling of belonging to something that is larger than yourself. The big question you need to ask yourself is this: when do I hide and when do I seek?
The first time I was fighting Cancer (2014) I was more of a hider. While outwardly people could tell by looking at me that I had Cancer (since I was bald and sick looking), I didn’t share the struggle with very many people. I didn’t want to freak people out, but also I didn’t want people to think I was weak and needed help. Even though I did need help, it was hard to ask for it. Part of the reason, I can see now, is that by admitting I needed help, it made the Cancer more real, and therefore, scarier. I remember wanting to hide when I would see someone I knew at the grocery store or somewhere. I didn’t want to answer questions. And besides, it was almost always awkward. People didn’t know what to say, and I didn’t know what to answer. So, I hid.
This time around, I am not hiding anymore. I have become a seeker. I seek to tell people about MBC, because all the ribbons and awareness campaigns in the world don’t really give much information about the deadliest form of Breast Cancer. The only Breast Cancer that kills. People don’t die from Stage 1 Breast Cancer (which is what I had in 2014). People die when the Cancer spreads (metastasizes) to other parts of the body. (check out my Facebook for more "think before you pink" information).
But I am not just seeking to share medical knowledge. I find I am also seeking out people who I can find comfort with. People who are compassionate and make me feel...happy. People that are open to hearing the often scary, ghastly, horrible, ugly saga about my Cancer. And you know what? It has been a lot easier to find these people than I ever expected it to be. Sometimes the person I let in is someone I already know well, but other times it has been more of a surprise, like a hidden gem. Like finding a super cool toy inside the Cracker Jack box. Someone who has been more on the fringe of my life, but now I have bonded with them in a way I never anticipated. It doesn't take much to make someone feel loved, and I have been blessed with finding new people who brighten my life and help lessen my load. I have found that by becoming a seeker, instead of a hider, I have opened a door to my heart and have let people in. And it feels great. It feels, right. Don’t get me wrong, there are still plenty of days where I feel like hiding, and sometimes, on a sad and gloomy day, I do hide. But all of us do. You don’t have to have Cancer to want a hiding day. We all have days where we hide. We hide from others, we hide from truths that we are not ready to handle, and we often hide from ourselves. It’s hard. Life can be hard. But life can also be beautiful, if you let it be.
You know the bible verse that has “seek and you will find” in it? I think most of us are familiar with that saying. But do you know the whole verse? It’s about so much more than just seeking and finding. “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” Matthew 7:7. I have always felt that the orders of the actions in this verse intensify as it goes on. Asking- a somewhat simple act, a bit humbling. Seeking- something that you need to delve into a bit more, you need to know what it is you are seeking. Knocking- you are there at the door of the thing you are asking for, the thing you are seeking, the thing you need. It’s time to act- it’s time to knock. It may take great courage to get to that part, but you can do it. You can find it within yourself. Take the chance, put yourself out there, knock on that door! Heck, break the door down if you need to!
I have gone through all three of those stages during the last two weeks while waiting to hear from my oncologist about what my new treatment will be. I asked, I sought, and then I knocked (well, actually I called, but you know what I mean). And here is the answer I received. I started a new oral chemotherapy drug yesterday called Xeloda. I take 8 pills a day, 12 hours apart, so that the drug will continually be in my system. It has a lot of unpleasant, but common, side effects. I am going to try my best to have the power of positive thinking and will away the possible side effects. I take the drug for 14 days on, then 7 days off. After three months I will have another scan to check the state of my tumor and lymph nodes. The three month wait is pretty scary, wondering the whole time if the Cancer is growing or not. I am truly hoping this is the drug that will work. I keep praying for that, and I hope God answers "Yes"! I am reminded of something a favorite author, Bob Goff, said in his book, Love Does; "I use to think God wouldn't talk to me, but now I know I'm just selective with what I choose to hear." I am hoping to hear a "yes, it works", but am also prepared for a "no, not this one" answer too. I do worry a bit though, if after three months of this new drug the scan comes back with good results, how will they be able to tell if it was the drugs that worked, or the daily caramel apple eating? Hmmmm (check out my Facebook (Suz Fetta Fleharty) for a delicious recipe for caramel apple mimosas!) Until next time, Sue