I just finished chemo Round #2 which I dubbed "Let's Do This!" If I turned the clock back to last August I never would've imagined that I'd be focused on Thriving despite a history of Can-Sa. That work would be on the backburner and yes, that I would miss it. That my life would revolve around doctors appointments, labwork, chemotherapy treatments, recovering from chemotherapy treatments and downtime getting ready for the next go-round. But this is only temporary and I know it is just one chapter in my very very long life.
People have commented on my attitude, my appearance, asked questions about "how I got it" and look at me with great sorrow when they see me. I've been told I need to take this seriously and it's been suggested to me that I take on the attitude of a Survivor "in treatment" (whatever that is). The problem is that none of this is me; either Before Can-Sa, now, nor After Can-Sa. If you've read prior posts you'll see a common thread about me and those people who raised me. We are positive people. There aren't any alternatives for us. We see the best in people and look for the best in all situations. It is the only way for the bros and me which has been great for me on this Can-Sa journey.
The quick answers to alot of the questions I get include yes I am taking this seriously. How couldn't I? Other answers? 1) They have no idea what causes this particular cancer. Only 4000 women will be diagnosed with this kind this year. The type of cancer I had (yes, I still say had) can be genetically linked to other cancers including potentially the type of brain cancer my father had. No link has been found, yet, to my mother's breast cancer but not much research has been completed on this. 2) I think my appearance is due to my spending more time putting make up on than I normally would and getting so much rest. Combined with drinking tons and tons of water. Like many cancer patients - I am expending a lot of energy to make sure I don't look sick. Because I am not. It's the medicine doing its magic, not the Can-Sa that is causing these physical changes. 3) While the empathy is appreciated the sorrowful looks can be too much at times. Despite my blogging - I just want to feel normal, talk about normal things and act normally. Yes, my new norm includes cancer but that is just one facet of my life. I still have the Bonuses, the Dogs, the SO, the opinions on politics and Real Housewives, and most important - an interest in what is going on with my friends and family. So let's focus on all of those things. 4) I am just a positive person. Period. I find myself garnering my energy more carefully these days; surrounding myself with positivity, normalcy (as much as possible) and getting my zen on. It works. The Can-Sa Buddy and now the Can-Sa Clique are a huge part of this. Our conversations are very open and somewhat direct. We know each other on an intimate level that honestly, no one else can get to know us on. It amazes me how the SO has adapted to these women who are strangers to him but know so much about him and me and us. We speak a language and share some bizarre experiences that can't be described to someone no matter how empathatic that listener is.
For me, the chemotherapy treatments are a special day. I know it sounds strange but truly they are. My first day I have to admit, I was a little watery as I walked in the room but it changed quickly. I see so many acts of kindness during my day there; the nurses who run the room greet everyone with hugs and jokes. They are caring and passionate about their jobs. You feel that this is a higher calling for them. They have worked together running this room for over 10 years. The room consists of 15 barcaloungers with IV poles and TV sets for each chair. There are snacks and drinks on hand plus a volunteer comes through every hour or so with juices, coffee, hot chocolate and cookies. The energy in the room is actually a combination of zen (love that word lately thanks to the BFF) and vibrant. It's very peaceful and upbeat due to everyone who is there. I am getting to know some of the other people who are on my schedule although most of them are in there for half the time I am. We greet each other, ask about our families and how we are feeling. The four doctors who oversee the practice greet everyone by name; whether you are their particular patient or not. Everyone trades tips on managing the sideffects of the chemo and shares food, magazines and book ideas. It is a community.
I am usually the first patient in and the last one to leave so they make sure I am set up comfortably and in a place where visitors can easily pull up a chair or sit in an adjacent lounge chair. Unless the room is really busy. Lucky me again, they rarely have anyone in there for longer than 5 hours; my stays will average 8+ it turns out. My mom aka That Woman joined me for Round #2. Within an hour she was reclining and reading, had a heated blanket over her (they keep the room very cool), a plate of cookies and a cup of coffee plus the option of a massage and communion both of which she declined. (Apparently she isn't a big believer in communion outside of Mass, but then again she goes to daily Mass.) I shared her Triple Negative and Thriving for 7 years history with the nurses who in turn shared it with a recently diagnosed Triple Negative who was there. We all just want to meet someone who has, or had, what we have - which I blogged about before. I am still looking for that someone.
I decided to put a theme to each treatment. Round #1 - Bring It On! Round #2 - Let's Do This! Round #3 - I Own This! and beyond - TBD. I shared this with my doctor in one of our conversations and he didn't laugh! He encourages my approach to this and shares it with the nurses. He is in and out of the chemo room all day. His goal, and the goal of this room and for people like me is to attain remission. To be Can-Sa free for as long as possible if not a lifetime. It was a blow the first time I heard this applied to me but now I get it and I am okay with it. The nurses and I were talking about my treatments the other week and I told them my goal is Can-Sa Free and Thriving. They loved it. No talk of remission, no talk of surviving. Just Thriving.
Thursday, June 20, 2013
Saturday, June 15, 2013
My Messy Life: On Fathers Day and Father Figures
My Messy Life: On Fathers Day and Father Figures: I was woken up this morning at five by two anxious dogs ready to get out for their morning walk. We moved from Park City back to the Los Ang...
Friday, May 31, 2013
My Athlete's Mindset and Can-Sa
I am from a family of athletes. We are Irish Catholic, competitive and focused. Focused beyond belief when necessary. And this has come in handy over the years in various family competitions, in sports and our careers too. With the exception of the Irish Twin (who is an incredibly gifted athlete) the rest of us had to work at it; we don't have that "athlete's touch" that he is blessed with. Dear Old Dad used to tell us that we would have to work harder and smarter than most in order to do well. And well we did. Three of us were NCAA athletes at times and the other three played intramural and club sports during their post high school and college years - I have to admit they were the better students for sure. Now the next generation has continued the love of sports and competition in college - in soccer and rugby.
My chosen sport was swimming. I loved everything about it. The quiet before the early thirty morning workouts. Smoothly cutting strokes through the water. Doing my homework and solving the world's problems in my head, all while working out. Pushing myself through not only workouts but months of workouts - all building to the every important qualifying meets at the end of the AAU season and then swimming in the high school league for fun. (Although that was awfully competitive too.) I wasn't the star but the reliable leg on the winning relay teams, always in the hunt for 1rst or 2nd in a variety of individual events too. My college coach described me as "versatile". (Still deciding if that was a compliment or not.) I swam with world record holders and Olympians as well as childhood friends. My AAU team trained with another team that is well known to this day for producing a number of Olympians and one particular swimmer who held a number of world records. Those girls all swam for a non-league high school rival who my team competed against on one particular day. Which fell right after short course nationals and everyone was in peak form. My race - the 200 free was against a girl who set the national short course record two weeks earlier. At that time she held 3 world records. Yes - I came in second as she shattered the US High School Girls record that day. I swam the race of my life and a personal best. Which was a victory for me since I only saw bubbles in her lane at the end of the race. That was the day I really learned it was all about competing against myself. Keeping my head in the race, swimming as well as I could and achieving personal bests.
Fast forward a number of 'cough cough' years and I've learned that I tap into that Athlete's Mindset frequently. At work, at home and in play. The one thing about athletes, or anyone in their career or at home - is that in addition to talent - success is really all about training. In athletics it can seem really daunting looking at the important game, tournament or meet at the end of the season so many months away. What you learn is that you don't measure yourself against that one point in time but rather against milestones along the way. Building muscle, refining skill, breaking the season into increments. Having fun along the way. Enjoying time with your teammates while staying focused on what you need to do. Looking back I realize I never appreciated all of the benefits of this that I still reap to this day. Until now.
I've spent so much time with doctors, nurses and needles in the last three months that I now define certain days as a Can-Sa free day. Can-Sa free days are days without appointments or any after affects of treatments. They are infrequent but do exist. Bouncing from surgery to minor surgery and chemotherapy, then radiation, in quick succession can take a toll. But I am lucky. Because I have an Athlete's Mindset. Instead of looking at the whole scope of this journey I decided to do this in increments. I have months of treatments ahead between chemotherapy and radiation. Which at first was really overwhelming. Until I realized I can handle it. Because I was once an athlete. Surgery - check. Plan of attack - check. Minor Surgery - check. First chemo - check. So far so good.
Now I only look ahead to the next treatment and look no further. After the treatment when I feel awful I tell myself I can do this because according to a wise friend of mine - its the medicine not the Can-Sa. In case no one ever shared this with you - the main thing post chemo (in addition to nausea) is body pain. It can be incredible. Pain medication might take the edge off but it is still there. I tell myself I can handle it because I used to swim 20,000 meters a day at times. I know how to distract myself from pain and remind myself that it is only temporary. I've never had a baby but I was speaking with one of my Can-Sa Buddies and she said she tells herself the same things. She compares it to a long labor until you hold that baby. It is all about the end result.
I shared my mental plan of attack with the Fabulous Support System. We will deal with this in increments and focus on the positive end result. No more conversations about the long months of treatment ahead or how long it has been since the journey started. No conversations about anything negative they have ever heard about any of this. I tell them we are only going to work with positivity and good information here while acknowledging this is now a part of our lives for now. They quickly agree and adapt. I also let them know I need Can-Sa free days and they like this idea too. Can-Sa talk is now just a part of our normal conversations about family, the weather and weekend plans. We don't look at the whole breadth of it - just what is coming up or what just happened. I am a lucky lady.
Two of my girlfriends have set up an alternating lunch date schedule to keep me busy and make sure I have those Can-Sa free times. We share girl talk, talk about the families and Significant Others aka the Men. Sometimes we talk about making plans for a post treatment vacation somewhere different to celebrate some milestone birthdays and my achievements of this year. Other friends keep us stocked in food - mostly for the SO. The work Can-Sa Buddy and I talk and laugh while comparing notes about our experiences. Last night's conversation was about the kindness we are experiencing on this journey. I shared with her my Athlete's Mindset and she agreed that is the best way to tackle this. The Work Chicks check in on me and send things to keep me occupied or drop by for a little gossip. The BFF has her hands full with a number of things these days. We provide distraction for each other and on occasion - heartfelt conversations too about our fears and challenges. Mostly we laugh in the end though. The five Bros check in on me and I can tell - compare notes about how they think the SO and I are doing. They inquire after The Brown Dog and The Black Dog aka my Constant Companions. We talk about an upcoming family trip that is planned for July and look at different things to do while we are together.
When my doctors and I talk about what is going on and what will go on they probe gently to see how I am doing emotionally. The other day the Superstar Doctor and I were talking and he asked if I felt overwhelmed. I told him I initially did but that I was once an athlete. After he stopped laughing while looking at my current non-athletic self he listened carefully. I shared with him that I've decided that for me to succeed, I was going to look at this as training my way to Thriving. Because I was going to apply an Athlete's Mindset. And win.
My chosen sport was swimming. I loved everything about it. The quiet before the early thirty morning workouts. Smoothly cutting strokes through the water. Doing my homework and solving the world's problems in my head, all while working out. Pushing myself through not only workouts but months of workouts - all building to the every important qualifying meets at the end of the AAU season and then swimming in the high school league for fun. (Although that was awfully competitive too.) I wasn't the star but the reliable leg on the winning relay teams, always in the hunt for 1rst or 2nd in a variety of individual events too. My college coach described me as "versatile". (Still deciding if that was a compliment or not.) I swam with world record holders and Olympians as well as childhood friends. My AAU team trained with another team that is well known to this day for producing a number of Olympians and one particular swimmer who held a number of world records. Those girls all swam for a non-league high school rival who my team competed against on one particular day. Which fell right after short course nationals and everyone was in peak form. My race - the 200 free was against a girl who set the national short course record two weeks earlier. At that time she held 3 world records. Yes - I came in second as she shattered the US High School Girls record that day. I swam the race of my life and a personal best. Which was a victory for me since I only saw bubbles in her lane at the end of the race. That was the day I really learned it was all about competing against myself. Keeping my head in the race, swimming as well as I could and achieving personal bests.
Fast forward a number of 'cough cough' years and I've learned that I tap into that Athlete's Mindset frequently. At work, at home and in play. The one thing about athletes, or anyone in their career or at home - is that in addition to talent - success is really all about training. In athletics it can seem really daunting looking at the important game, tournament or meet at the end of the season so many months away. What you learn is that you don't measure yourself against that one point in time but rather against milestones along the way. Building muscle, refining skill, breaking the season into increments. Having fun along the way. Enjoying time with your teammates while staying focused on what you need to do. Looking back I realize I never appreciated all of the benefits of this that I still reap to this day. Until now.
I've spent so much time with doctors, nurses and needles in the last three months that I now define certain days as a Can-Sa free day. Can-Sa free days are days without appointments or any after affects of treatments. They are infrequent but do exist. Bouncing from surgery to minor surgery and chemotherapy, then radiation, in quick succession can take a toll. But I am lucky. Because I have an Athlete's Mindset. Instead of looking at the whole scope of this journey I decided to do this in increments. I have months of treatments ahead between chemotherapy and radiation. Which at first was really overwhelming. Until I realized I can handle it. Because I was once an athlete. Surgery - check. Plan of attack - check. Minor Surgery - check. First chemo - check. So far so good.
Now I only look ahead to the next treatment and look no further. After the treatment when I feel awful I tell myself I can do this because according to a wise friend of mine - its the medicine not the Can-Sa. In case no one ever shared this with you - the main thing post chemo (in addition to nausea) is body pain. It can be incredible. Pain medication might take the edge off but it is still there. I tell myself I can handle it because I used to swim 20,000 meters a day at times. I know how to distract myself from pain and remind myself that it is only temporary. I've never had a baby but I was speaking with one of my Can-Sa Buddies and she said she tells herself the same things. She compares it to a long labor until you hold that baby. It is all about the end result.
I shared my mental plan of attack with the Fabulous Support System. We will deal with this in increments and focus on the positive end result. No more conversations about the long months of treatment ahead or how long it has been since the journey started. No conversations about anything negative they have ever heard about any of this. I tell them we are only going to work with positivity and good information here while acknowledging this is now a part of our lives for now. They quickly agree and adapt. I also let them know I need Can-Sa free days and they like this idea too. Can-Sa talk is now just a part of our normal conversations about family, the weather and weekend plans. We don't look at the whole breadth of it - just what is coming up or what just happened. I am a lucky lady.
Two of my girlfriends have set up an alternating lunch date schedule to keep me busy and make sure I have those Can-Sa free times. We share girl talk, talk about the families and Significant Others aka the Men. Sometimes we talk about making plans for a post treatment vacation somewhere different to celebrate some milestone birthdays and my achievements of this year. Other friends keep us stocked in food - mostly for the SO. The work Can-Sa Buddy and I talk and laugh while comparing notes about our experiences. Last night's conversation was about the kindness we are experiencing on this journey. I shared with her my Athlete's Mindset and she agreed that is the best way to tackle this. The Work Chicks check in on me and send things to keep me occupied or drop by for a little gossip. The BFF has her hands full with a number of things these days. We provide distraction for each other and on occasion - heartfelt conversations too about our fears and challenges. Mostly we laugh in the end though. The five Bros check in on me and I can tell - compare notes about how they think the SO and I are doing. They inquire after The Brown Dog and The Black Dog aka my Constant Companions. We talk about an upcoming family trip that is planned for July and look at different things to do while we are together.
When my doctors and I talk about what is going on and what will go on they probe gently to see how I am doing emotionally. The other day the Superstar Doctor and I were talking and he asked if I felt overwhelmed. I told him I initially did but that I was once an athlete. After he stopped laughing while looking at my current non-athletic self he listened carefully. I shared with him that I've decided that for me to succeed, I was going to look at this as training my way to Thriving. Because I was going to apply an Athlete's Mindset. And win.
Sunday, May 26, 2013
My Messy Life: A Letter to My Niece: Why I Say the Pledge of All...
My Messy Life: A Letter to My Niece: Why I Say the Pledge of All...: I am so lucky. I got to spend the last 10 or so days in Southern California, mostly with my family and adding in some Touchstone Time at the...
Sunday, May 12, 2013
To Mom on Mother's Day 2013
Some of my first memories are of you comforting me in the middle of the night. You know, in that little house in Beaver Creek, Ohio? The Irish Twin was an infant and roommate; I used to wake up scared if he cried. I remember birthday parties in that house with my BFF Mo - paper cups filled with candy. The Big Bro and Older Bro bringing me all of my presents and helping to open them when I couldn't quite rip into them fast enough. Grilled cheese sandwiches take me back to that house in a heartbeat.
With six kids and a husband who couldn't talk about his job you kept it together. You were the protector, provider and keeper of the flame. You gathered the Irish Twin and me in your arms run to the older boys school when a plane crashed into it to make sure they were okay and after they were? Grilled cheese all around. Five kids with the mumps at the same time and a husband in a country most people hadn't heard of. A son in the hospital with a bone disease I still can't spell while we were in a new city and state. A pregnant you splinting my shattered arm while Dad practically threw up in front of us. I look back at things I took for granted and am now only able to appreciate your gentle touch and calm under fire. Remember the tornado that destroyed a large part of the town we lived in? My memory is one of a fun adventure. You putting the three of us younger kids under Dad's workbench in the basement and telling us to pretend we were invisible, then finding the dog and bringing her down too.
With all of the moves, new houses, schools and friends you kept it fun. You would tell us we were lucky, we'd would always know someone in every major city in the country because we moved so much. Which is true to this day if you look at my Facebook page. When I was a surly teenager looking at a move that I was convinced would destroy my future you started a new tradition. To have a special day where we went out to a fancy and very expensive lunch - Nana in tow. Just us girls. I wish I appreciated it more at the time.
You always took a trip to meet up with your girlfriends. Friends from college and also a cousin or two thrown in since you all went to college together. I know you would've loved it if I continued that tradition of attending that college as did so many of those friends' daughters. Since it turned out that none of my cousins went to that school I feel I made the right choice for me. And thank you for supporting it. Now that I am much older and going on girls trips of my own I see them for what they meant to you - soul food. Time to nourish that spirit for the day to day living.
I feel for you that your only daughter was a Daddy's girl. It was an exclusive club at times and in looking back, I realize how hard that must have been for you. Of course, you had your own fan club inside the family which was stronger in numbers and much louder most of the time. But I also know that you were the one who got the call over my first broken heart, my first real job and for girlfriend advice. Remember when we won the Sports Trivia night much to the shock of all of the men in the sports bar we were in? Best story ever. During the most difficult of times you and I were the ones who met with the doctors about Dad's diagnosis and then sat with him when he got it. You and I were the ones who had those meaningful conversations with him that we hated to have as his life's story came to that final chapter. That was when I learned about your grace and hoped that I picked that quality up from you.
I know my family didn't come in the form you originally thought it would but I love how you embraced the Bonuses and adapted your expectations to this blended family and its needs. Hearing the littlest Bonuses call you Nana makes my heart sing. It makes me happy that you adore the SO although there are times I feel a little excluded from your mutual admiration society. Even The Black Dog and The Brown Dog adore you, although The Black Dog a little more so.
As I've faced Can-Sa in the last few months, I didn't have to look any further than you to see how to handle this fight. How to be positive and embrace this journey - grow from the experience and when the time is right? Put it to good use to help someone else. This chapter reminded me that you are still my Mom - here to make sure I take my medicines on time, get me a fresh glass of water and get my much needed sleep. Making me grilled cheese sandwiches as part of the recuperation. You've made the road ahead, although different from your Cancer journey - less scary. And I need that.
Mom, you've given the six of us a bounty of many gifts. We don't tell you that enough. I see them in my life every day. The importance of a good sense of humor at all times. Curiousity about the world we live in and a calling to get involved; make it a better place. A sense of grace and peace in the face of adversity. The ability to focus on the big picture and only plan for the best outcome. In our worlds, the glass is always half full. Your strength is something we all aspire to. Our lives are about a past, present and future that are all tied together through traditions and story telling. I see these things in the Bonuses and with the littlest ones too just by calling you Nana. I am so grateful to call you my Mom on this Mother's Day and proud to be your daughter too.
With six kids and a husband who couldn't talk about his job you kept it together. You were the protector, provider and keeper of the flame. You gathered the Irish Twin and me in your arms run to the older boys school when a plane crashed into it to make sure they were okay and after they were? Grilled cheese all around. Five kids with the mumps at the same time and a husband in a country most people hadn't heard of. A son in the hospital with a bone disease I still can't spell while we were in a new city and state. A pregnant you splinting my shattered arm while Dad practically threw up in front of us. I look back at things I took for granted and am now only able to appreciate your gentle touch and calm under fire. Remember the tornado that destroyed a large part of the town we lived in? My memory is one of a fun adventure. You putting the three of us younger kids under Dad's workbench in the basement and telling us to pretend we were invisible, then finding the dog and bringing her down too.
With all of the moves, new houses, schools and friends you kept it fun. You would tell us we were lucky, we'd would always know someone in every major city in the country because we moved so much. Which is true to this day if you look at my Facebook page. When I was a surly teenager looking at a move that I was convinced would destroy my future you started a new tradition. To have a special day where we went out to a fancy and very expensive lunch - Nana in tow. Just us girls. I wish I appreciated it more at the time.
You always took a trip to meet up with your girlfriends. Friends from college and also a cousin or two thrown in since you all went to college together. I know you would've loved it if I continued that tradition of attending that college as did so many of those friends' daughters. Since it turned out that none of my cousins went to that school I feel I made the right choice for me. And thank you for supporting it. Now that I am much older and going on girls trips of my own I see them for what they meant to you - soul food. Time to nourish that spirit for the day to day living.
I feel for you that your only daughter was a Daddy's girl. It was an exclusive club at times and in looking back, I realize how hard that must have been for you. Of course, you had your own fan club inside the family which was stronger in numbers and much louder most of the time. But I also know that you were the one who got the call over my first broken heart, my first real job and for girlfriend advice. Remember when we won the Sports Trivia night much to the shock of all of the men in the sports bar we were in? Best story ever. During the most difficult of times you and I were the ones who met with the doctors about Dad's diagnosis and then sat with him when he got it. You and I were the ones who had those meaningful conversations with him that we hated to have as his life's story came to that final chapter. That was when I learned about your grace and hoped that I picked that quality up from you.
I know my family didn't come in the form you originally thought it would but I love how you embraced the Bonuses and adapted your expectations to this blended family and its needs. Hearing the littlest Bonuses call you Nana makes my heart sing. It makes me happy that you adore the SO although there are times I feel a little excluded from your mutual admiration society. Even The Black Dog and The Brown Dog adore you, although The Black Dog a little more so.
As I've faced Can-Sa in the last few months, I didn't have to look any further than you to see how to handle this fight. How to be positive and embrace this journey - grow from the experience and when the time is right? Put it to good use to help someone else. This chapter reminded me that you are still my Mom - here to make sure I take my medicines on time, get me a fresh glass of water and get my much needed sleep. Making me grilled cheese sandwiches as part of the recuperation. You've made the road ahead, although different from your Cancer journey - less scary. And I need that.
Mom, you've given the six of us a bounty of many gifts. We don't tell you that enough. I see them in my life every day. The importance of a good sense of humor at all times. Curiousity about the world we live in and a calling to get involved; make it a better place. A sense of grace and peace in the face of adversity. The ability to focus on the big picture and only plan for the best outcome. In our worlds, the glass is always half full. Your strength is something we all aspire to. Our lives are about a past, present and future that are all tied together through traditions and story telling. I see these things in the Bonuses and with the littlest ones too just by calling you Nana. I am so grateful to call you my Mom on this Mother's Day and proud to be your daughter too.
Thursday, May 9, 2013
What's Your Number?
Since I posted last I've been poked and prodded, had surgery, proven that you can live off whipped potatoes for 4 days while in the hospital. Everyone believes I left the hospital without my constant companion - Can Sa. My hospital stay was great; the people there were caring, compassionate and treated me like I was part of their families. I can't say enough good things about those folks despite a couple of situations that required a strong sense of humor - for both the patient and the caregivers. I am now home and recuperating; getting prepared for the road ahead. Yes, the road ahead is longer than expected but one thing is certain. Limbo no more!
Can Sa journeys are measured in so many ways. Staging, grading, type of cancer. Stages range from one to four; grades are along the same scale. Personally I wish the scale ran up to 10 but that isn't the way it works. Your emotions are constantly evaluated. Will you handle it? Can you handle it? It is one big fat report card that you have to get during the medical equivalent of a parent-teacher conference and then you carry it around. It is your E ticket to various rides available only to those in the Cancer Park. Even when you get in the Park there can be a pecking order of sorts. There has to be if you think about it. Staging and grading help everyone figure out who needs to get to the front of the line most quickly. I've learned that if the Superstar Doctor is running late - it is because someone else needs him at that time more than I do. And I am okay with that. I say a mental prayer for whoever he is helping and also for him. His time is precious but in my experience when the Superstar is with us we feel like we are his only patients. Ever. He needs the prayers as much as the patients do.
If you are, or know anyone - on a Can Sa journey you know this involves a lot of time in waiting rooms. With strangers. When the SO and I are in the waiting rooms we tend to be pretty quiet and sit in the shadows. We are new to this and unsure of the social boundaries. I tend to acknowledge other people briefly and immerse myself in - well nothing. I've learned I can make myself look awfully busy. I've seen many people like me there, others who were outgoing and talkative and yet others who make their situations known to the receptionist and the whole waiting room. They have cancer, they are in pain and can't be delayed. Some can be competitive about it even. Personally this isn't a competition I am interested in at all. I feel for those people especially, the stress is wearing them down.
The SO and I were in a waiting room last week after my surgery. We were there for a post op checkup,removal of various things that shouldn't ever be in anyone's body and to review the final pathology of my Can Sa. I was nervous and in some pain, couldn't sit comfortably. I ended up moving to a different type of chair and had to stretch my legs out to ease the pain a little. The meds weren't cutting it. A woman came in and sat down next to me. Out of the blue she asked how long it had been since my surgery. She shared with me that she had surgery in the same area. That I'll start to feel better but will have some pain even after a year. She talked about her surgery and the follow up appointments over the year since it had taken place.
I got comfortable and asked her a few questions until it became apparent that our surgeries were very different. She had the same fears that I now have but I also saw the same positive spirit I think I have. Her name got called and she mentioned her cancer stage and asked about mine. I saw in her eyes compassion and curiousity. I think she understood my answer even though I never gave it. I had an instant of wanting to switch stages with her but I also knew her Can SA experience was as stressful and scary as mine despite our different stages and grades. You see one of the things I've also learned is that we want to find exact kindred spirits in this journey. Stage, grade, type and outlook. We want to look at each other and see a mirrored reflection of ourselves and our situation, see hope. I realized I couldn't give her the reflection she wanted to see, the her of a year ago but I could give positive thoughts for her continued journey. And on her side? She gave me the encouragement and boost I needed at that moment; that I can handle this no matter how complicated because she believed I could. Because she told me I'll be fine and I needed to hear that.
Can Sa journeys are measured in so many ways. Staging, grading, type of cancer. Stages range from one to four; grades are along the same scale. Personally I wish the scale ran up to 10 but that isn't the way it works. Your emotions are constantly evaluated. Will you handle it? Can you handle it? It is one big fat report card that you have to get during the medical equivalent of a parent-teacher conference and then you carry it around. It is your E ticket to various rides available only to those in the Cancer Park. Even when you get in the Park there can be a pecking order of sorts. There has to be if you think about it. Staging and grading help everyone figure out who needs to get to the front of the line most quickly. I've learned that if the Superstar Doctor is running late - it is because someone else needs him at that time more than I do. And I am okay with that. I say a mental prayer for whoever he is helping and also for him. His time is precious but in my experience when the Superstar is with us we feel like we are his only patients. Ever. He needs the prayers as much as the patients do.
If you are, or know anyone - on a Can Sa journey you know this involves a lot of time in waiting rooms. With strangers. When the SO and I are in the waiting rooms we tend to be pretty quiet and sit in the shadows. We are new to this and unsure of the social boundaries. I tend to acknowledge other people briefly and immerse myself in - well nothing. I've learned I can make myself look awfully busy. I've seen many people like me there, others who were outgoing and talkative and yet others who make their situations known to the receptionist and the whole waiting room. They have cancer, they are in pain and can't be delayed. Some can be competitive about it even. Personally this isn't a competition I am interested in at all. I feel for those people especially, the stress is wearing them down.
The SO and I were in a waiting room last week after my surgery. We were there for a post op checkup,removal of various things that shouldn't ever be in anyone's body and to review the final pathology of my Can Sa. I was nervous and in some pain, couldn't sit comfortably. I ended up moving to a different type of chair and had to stretch my legs out to ease the pain a little. The meds weren't cutting it. A woman came in and sat down next to me. Out of the blue she asked how long it had been since my surgery. She shared with me that she had surgery in the same area. That I'll start to feel better but will have some pain even after a year. She talked about her surgery and the follow up appointments over the year since it had taken place.
I got comfortable and asked her a few questions until it became apparent that our surgeries were very different. She had the same fears that I now have but I also saw the same positive spirit I think I have. Her name got called and she mentioned her cancer stage and asked about mine. I saw in her eyes compassion and curiousity. I think she understood my answer even though I never gave it. I had an instant of wanting to switch stages with her but I also knew her Can SA experience was as stressful and scary as mine despite our different stages and grades. You see one of the things I've also learned is that we want to find exact kindred spirits in this journey. Stage, grade, type and outlook. We want to look at each other and see a mirrored reflection of ourselves and our situation, see hope. I realized I couldn't give her the reflection she wanted to see, the her of a year ago but I could give positive thoughts for her continued journey. And on her side? She gave me the encouragement and boost I needed at that moment; that I can handle this no matter how complicated because she believed I could. Because she told me I'll be fine and I needed to hear that.
Saturday, April 6, 2013
Upside, Downside-Upside, Upside, Nothing but Upside-Upside
Wow, this Can-Sa thing is really taking over my life. And that of the SO and the Fabulous Support System. Well maybe not taking over theirs but it sure feels that way to me. I'm learning a ton of things along the way already. Most of them are positive but I have had my moments of not-so-positive too.
One of the lessons I am taking away already is really focusing on being present and in the moment. I always thought I was pretty good about that and pretty flexible on a number of things. After all, I am a middle child in a somewhat large family. My ever present uterine baseball and its little cellural friends have taught me that I need to be even more open and flexible. It isn't like I can control or manage this anyways; just how I handle it.
On Monday I was lucky enough to go to Opening Day at Dodger Stadium. That is a really special experience at any ballpark in any city in the country. And yes, I am closet baseball fan and love the Reds. Anyone who knows me well knows: a) I think Pete Rose should be in the Hall of Fame; especially given some of the drugged thugs that have been admitted since he played; and b) I was very happy to see Pete Rose's jersey in the one of the first displays in Cooperstown when the SO and I were there 2 summers ago. It was like someone with my sense of humor (and that of many of my friends) found a way to pimp the voters anyways.
So back to this living in the moment thing. After the game I had an infield pass which lets you mingle with various people, certain Dodgers, various celebrities and local media. The BFF kept joking that this was my Make A Wish Foundation gift and I better appreciate it. But truly, I was there with some work friends so I had to be on good behavior. Until Matt Kemp walked over. Every one around us parted like Moses and the Red Sea. People were worshipping him and trying to get his ear, pictures taken and be a part of the glory that is Matt Kemp. So naturally when he came over to where I was standing I simply introduced myself to him to the shock of my co-workers. He seemed nice enough, extended his hand and introduced himself to me too. (As if I didn't know who he was.) Then Andre Ethier appeared. My version is that I didn't want to be rude to him either so I introduced myself; he offered to have a picture taken and put his arm around me. A so-called Witness to the "alleged incident" has a different version. In his retelling of the story I chased Andre across the infield, pushed some little kids out of the way and forced him to take a picture with me. Which supposedly he did while frantically gesturing for security. Now one thing we agree upon is that I put my hand on his chest for the picture. BTW the SO said he totally understood my behavior - Can-Sa and all of that. I'd like to think I was simply living in the moment; others think there are laws that may have been broken. Total Upside either way based on the end result.
The flexibility part is really getting tested these days. As a friend of mine told me, every Can-Sa journey is unique - how your body and you handle it can't be judged by anyone else. When I suggested to her, a colon and breast cancer survivor (she hates that term) - that mine wasn't that bad compared to most other people she really got upset with me. She pointed out that while everyone thinks there is a plan and way to do things no one is walking in my shoes. And if this cancer is the only one I have to deal with in my life - it is still cancer and can't be compared to anyone elses. That I need to do what is right for me (hence the Andre Ethier groping incident) and pay attention to what is going on with me. Which is good because I am experiencing fatigue that I didn't expect at all. And I haven't spoken with anyone who has had this although to be true most of the people I've spoken with have other types of cancers or had fibroids that weren't malignant. I was overthinking it; there was no way this fatigue could be a simple thing right? Until the Superstar Doctor simply said - you've lost and continue to lose a lot of blood which makes people tired. You need to rest. And he gave me some ideas of things to look for in case the blood levels get too low which they already are somewhat. In my brain somewhere I probably knew that was the answer but just didn't accept it for some reason. But now I do and I realize I just have to go with the flow. Literally. And if that means working from home than that is what I'll do. Being more flexible is caused by some not so great things but is also opening up new doors for me. So flexibility is a Downside-Upside for me right now.
Finally, patience and advocacy. One can never have too much of this. Someone once told me we aren't supposed to ask God for these qualities because the word on the street is that He shows you that you have them is by repeatedly testing you for them. And believe me, I've been tested lately. Dealing with the complex organization called the healthcare industry will do that for sure. I keep thinking I have an advantage navigating complex organizations just based on what I do for a living. Little did I know. I've been waiting for almost two months for a surgery date to hopefully end this journey with Can-Sa. Many doctors appointments, tests, calls, paperwork. And I wasn't getting an answer on the date just that they were waiting for the HMO to approve this. No need to get involved on my part. The new me decided I should get involved. So I simply called the HMO to find out what the delay was. Turned out the paperwork filed by the doctor's office was missing one thing and had an error too. Which had the HMO treating this as a normal, laproscopic hysterectomy - which believe me - I wish I was having. Initially the folks in the Superstar's office didn't have the sense of urgency to straighten this out that I needed them to have. So I created it for them. Reminded them that while Can-Sa is routine to them it certainly isn't to me and I am sure not many of their patients. Let them know how to fix the problem, that I wasn't interested in re-hashing what caused the issue. And finally thanked them for taking the calls I'd been placing. We now have a surgery date and my job is to - again, be patient until that happens. And to continue to advocate for myself and remind people this is my Can-Sa even if it is their line of business. Patience and Advocacy. Things I can use throughout my life so it is all Upside here.
For me positivity is the only way to go. I get that it can be annoying and some people might think I am burying my head in the sand, not willing to face what is going on. That isn't the case for me. The challenges I have in this journey, aside from the obvious - are being vulnerable and opening myself up to the experience, the love and support that is all around me. Telling people what I need and don't need (hopefully in a nice way). Letting the Fabulous Support System participate in this too because this doen't just affect me - it affects those around me. And for someone who hates being the center of attention to take it in, accept it and grow from this. Nothing but Upside-Upside.
One of the lessons I am taking away already is really focusing on being present and in the moment. I always thought I was pretty good about that and pretty flexible on a number of things. After all, I am a middle child in a somewhat large family. My ever present uterine baseball and its little cellural friends have taught me that I need to be even more open and flexible. It isn't like I can control or manage this anyways; just how I handle it.
On Monday I was lucky enough to go to Opening Day at Dodger Stadium. That is a really special experience at any ballpark in any city in the country. And yes, I am closet baseball fan and love the Reds. Anyone who knows me well knows: a) I think Pete Rose should be in the Hall of Fame; especially given some of the drugged thugs that have been admitted since he played; and b) I was very happy to see Pete Rose's jersey in the one of the first displays in Cooperstown when the SO and I were there 2 summers ago. It was like someone with my sense of humor (and that of many of my friends) found a way to pimp the voters anyways.
So back to this living in the moment thing. After the game I had an infield pass which lets you mingle with various people, certain Dodgers, various celebrities and local media. The BFF kept joking that this was my Make A Wish Foundation gift and I better appreciate it. But truly, I was there with some work friends so I had to be on good behavior. Until Matt Kemp walked over. Every one around us parted like Moses and the Red Sea. People were worshipping him and trying to get his ear, pictures taken and be a part of the glory that is Matt Kemp. So naturally when he came over to where I was standing I simply introduced myself to him to the shock of my co-workers. He seemed nice enough, extended his hand and introduced himself to me too. (As if I didn't know who he was.) Then Andre Ethier appeared. My version is that I didn't want to be rude to him either so I introduced myself; he offered to have a picture taken and put his arm around me. A so-called Witness to the "alleged incident" has a different version. In his retelling of the story I chased Andre across the infield, pushed some little kids out of the way and forced him to take a picture with me. Which supposedly he did while frantically gesturing for security. Now one thing we agree upon is that I put my hand on his chest for the picture. BTW the SO said he totally understood my behavior - Can-Sa and all of that. I'd like to think I was simply living in the moment; others think there are laws that may have been broken. Total Upside either way based on the end result.
The flexibility part is really getting tested these days. As a friend of mine told me, every Can-Sa journey is unique - how your body and you handle it can't be judged by anyone else. When I suggested to her, a colon and breast cancer survivor (she hates that term) - that mine wasn't that bad compared to most other people she really got upset with me. She pointed out that while everyone thinks there is a plan and way to do things no one is walking in my shoes. And if this cancer is the only one I have to deal with in my life - it is still cancer and can't be compared to anyone elses. That I need to do what is right for me (hence the Andre Ethier groping incident) and pay attention to what is going on with me. Which is good because I am experiencing fatigue that I didn't expect at all. And I haven't spoken with anyone who has had this although to be true most of the people I've spoken with have other types of cancers or had fibroids that weren't malignant. I was overthinking it; there was no way this fatigue could be a simple thing right? Until the Superstar Doctor simply said - you've lost and continue to lose a lot of blood which makes people tired. You need to rest. And he gave me some ideas of things to look for in case the blood levels get too low which they already are somewhat. In my brain somewhere I probably knew that was the answer but just didn't accept it for some reason. But now I do and I realize I just have to go with the flow. Literally. And if that means working from home than that is what I'll do. Being more flexible is caused by some not so great things but is also opening up new doors for me. So flexibility is a Downside-Upside for me right now.
Finally, patience and advocacy. One can never have too much of this. Someone once told me we aren't supposed to ask God for these qualities because the word on the street is that He shows you that you have them is by repeatedly testing you for them. And believe me, I've been tested lately. Dealing with the complex organization called the healthcare industry will do that for sure. I keep thinking I have an advantage navigating complex organizations just based on what I do for a living. Little did I know. I've been waiting for almost two months for a surgery date to hopefully end this journey with Can-Sa. Many doctors appointments, tests, calls, paperwork. And I wasn't getting an answer on the date just that they were waiting for the HMO to approve this. No need to get involved on my part. The new me decided I should get involved. So I simply called the HMO to find out what the delay was. Turned out the paperwork filed by the doctor's office was missing one thing and had an error too. Which had the HMO treating this as a normal, laproscopic hysterectomy - which believe me - I wish I was having. Initially the folks in the Superstar's office didn't have the sense of urgency to straighten this out that I needed them to have. So I created it for them. Reminded them that while Can-Sa is routine to them it certainly isn't to me and I am sure not many of their patients. Let them know how to fix the problem, that I wasn't interested in re-hashing what caused the issue. And finally thanked them for taking the calls I'd been placing. We now have a surgery date and my job is to - again, be patient until that happens. And to continue to advocate for myself and remind people this is my Can-Sa even if it is their line of business. Patience and Advocacy. Things I can use throughout my life so it is all Upside here.
For me positivity is the only way to go. I get that it can be annoying and some people might think I am burying my head in the sand, not willing to face what is going on. That isn't the case for me. The challenges I have in this journey, aside from the obvious - are being vulnerable and opening myself up to the experience, the love and support that is all around me. Telling people what I need and don't need (hopefully in a nice way). Letting the Fabulous Support System participate in this too because this doen't just affect me - it affects those around me. And for someone who hates being the center of attention to take it in, accept it and grow from this. Nothing but Upside-Upside.
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