Chapter 38, July 2010, Cancer Strikes my sister Kim's 20 year old daughter

Chapter 38, July 2010, Cancer strikes my sister Kim's 20 year old daughter
My sister Kim is just one year older than me. Growing up I saw her as, part big sister, even though she's as least five inches shorter than me, part Mom, you have lots of Mom's in a family of twelve and last part protector, confidant and friend. Kim is quiet, while I'm out there and loud, she is attentive, making her a good listener. This quality leaves one not only with a wise mind but also an excellent sense of people, their wants, needs and more. Me? I talk too much and could afford to listen more. When I engage in conversation with Kim, because she's on the quiet side, I constantly remind myself to stop talking, ask questions of her and listen for the answers, easier said than done in my book. Because we both enjoy laughter, my goal is often to make her laugh, but she is funny as well.
My whole life I've had the utmost of respect for Kim or Kimbo as I like to refer to her. I'm not sure where that nickname came from but it has stuck for many years. When we were growing up I drove Kimbo crazy. Seeing her in the halls at school would motivate me to call her name out in delight with one of my arms fully extended, waving frantically until I got her attention. This would make her smile and gently roll her eyes while waving back, never ignoring or making fun of me like some of my friends' older siblings' might do to their own brothers or sisters.
Like our Mother, Kim chose nursing as a career. A perfect match, she is calm in a crisis, compassionate and makes intelligent decisions while chaos is swirling around her. A good example of this came while observing an accident during a family vacation. Mom, who was in her late seventies at the time, slipped and fell, causing a blow to her head and what appeared to be an extreme amount of blood loss. Everyone was in a panic, especially the pool employees, running around like chickens without their heads. Kim calmed the crowd down, gave them a list of what she needed and went about saving the day.
How did she grow into this strong, confident woman? I'm not sure. Who knows how and why humans are shaped and formed? Obviously it is partly genetics as well as environmental, among other situations. Reflecting back, I can recall a few incidents where Kim had the grace of a cool, calm adult but she hadn't even hit her teens. The most vivid experience came on a cold February morning in Minnesota, the year was 1967 and we were all sick with the flu, everyone except Kim that is. Having one sick kid can be a challenge for a parent, so imagine what it might be like having 10 sick kids ranging in age from 3 to 17. My Mother needed assistance and Kimbo was there to help.
Some of us were awake, but still in bed upstairs, a few were asleep, and Kim, along with my Mother was awake in the kitchen making breakfast, including eggs and pancakes. Kim was dressed in her school clothes. Mom tied a rectangular long cloth around Kim's neck to keep her freshly ironed clothes clean for school.
All of a sudden we heard screaming and yelling followed by a scuffle. Don't get me wrong, these kinds of outbursts were no strangers at the O'Brien household, but not usually this early and none of us could figure out who could have been involved since we were all sick in bed. This prompted a few of us to go downstairs to check out the situation. As we stepped into the kitchen we saw our dad practically on top of Kimbo folding her up inside his blanket.
Kim had gotten a little too close to the gas flame from the stove top causing the protective apron she was wearing to burst into flames, Kim began screaming my Mom ran and tried to put the fire out. My Dad heard the ruckus, and for no apparent reason grabbed a blanket, ran to the kitchen putting out the fire with that blanket.
My Dad rushed her to the hospital to eventually find out she had third degree burns on her face, neck and chest. She had a week's stay in the hospital putting her through a painful recovery. When she finally came home she wasn't allowed visitors, nor were we. My parents thought other children might make fun of her so they kept her isolated, letting only us, her siblings to play and entertain. Perhaps this is why I love to try to make her laugh. Kimbo was left with no scarring on her face, but her neck and chest carry a few marks that are unrecognizable unless you are aware of what had happened all those years ago.
Her painful recovery seemed to go so smoothly, mainly because she never complained or felt sorry for herself. She was a trooper. This type of incident would leave anyone with some powerful, life changing emotions. Kim was just eleven years old. I imagine it helped form her into the spectacular person that she has become today.
Another situation I witnessed Kim endure must been the following summer. We had the misfortune of living next to a crazy pedophile who tried to have his way with me and some of my younger sisters. We all hated the guy. One night we climbed his fence and stole a few of his green apples from one of his many apple trees. He caught Kimbo, trapped her under his trailer and sprayed her repeatedly in the face until she couldn't breathe. She finally escaped gasping and crying, but holding her head up high acting brave as hell. She was my hero that night!
I could go on and on about how my big sister came to have the personality and strength she has but I don't think I have enough paper. I just know I'm proud to be her sister.
Kim's daughter gets cancer
July 2010 my sister Kim's daughter Kelsey had been experiencing some abdominal pain as well as being able to palpate a moveable lump in her lower abdominal area. Kim, being a nurse, jumped right on getting her a visit to their physician to see what was going on. The first lab they ran was blood and urine tests to check for pregnancy. The urine culture came back 100% positive for pregnancy. The next two hours were spent trying to find a heartbeat of a fetus that was not there. The blood test came back negative for pregnancy. A gynecologist was called in to do an ultrasound, but the doc was sure she wasn't pregnant because of the negative blood test. The ultrasound showed a giant mass but they were not sure what it was. They were also unable to locate her ovary so they thought perhaps it was a fibroid tumor. Because of their uncertainty, they referred Kim to the Mayo Clinic, a much larger hospital. The Mayo doc thought it was a uterine fibroid or an ovarian fibroma.

Everyone was in agreement that surgery to remove the benign mass was necessary. Most of my Minnesota family members went to the clinic to wait with my sister Kim, her husband Joe and step daughter Erica for the results of the surgery. Prior to going into the operating room, the physician was quite sure that everything was benign and it would be just a routine surgery. It wasn't until Kelsey was on the operating table that they realized this was cancer, a tumor the size of a grapefruit. Devastation was the word for the day. My usually strong, silent, stoic sister Kim and her husband Joe felt as if they'd been punched in the gut. At this point they did not know the stage of the cancer or type. They were just left with this familiar, negative impact of the word cancer. The pathology came back with a stage one cancer called disgerminoma in her right ovary which was removed.
After the initial shock wore off, Kim and Joe buckled down, camped out 24/7 until Kelsey was allowed to come home. Everyone, including Alex, Katie and Frankie, that was able to make the trip to Minnesota to support Kimbo, Erica and Joe was on the road within hours. Kelsey was home within a few days. The Surgeon was sure they removed all of the cancer. It had not spread to the lymph nodes or other vital organs which was also excellent news.
Advice
The best advice I can give you from this chapter is early detection! Kelsey is into Yoga, which helps her know her body well. She did not waste time making an appointment with a physician, which is key in early detection. Know yourself, know your body!

Chapter 38, July 2010, Cancer strikes my sister Kim's 20 year old daughter

Chapter 38, July 2010, Cancer strikes my sister Kim's 20 year old daughter
My sister Kim is just one year older than me. Growing up I saw her as, part big sister, even though she's as least five inches shorter than me, part Mom, you have lots of Mom's in a family of twelve and last part protector, confidant and friend. Kim is quiet, while I'm out there and loud, she is attentive, making her a good listener. This quality leaves one not only with a wise mind but also an excellent sense of people, their wants, needs and more. Me? I talk too much and could afford to listen more. When I engage in conversation with Kim, because she's on the quiet side, I constantly remind myself to stop talking, ask questions of her and listen for the answers, easier said than done in my book. Because we both enjoy laughter, my goal is often to make her laugh, but she is funny as well.
My whole life I've had the utmost of respect for Kim or Kimbo as I like to refer to her. I'm not sure where that nickname came from but it has stuck for many years. When we were growing up I drove Kimbo crazy. Seeing her in the halls at school would motivate me to call her name out in delight with one of my arms fully extended, waving frantically until I got her attention. This would make her smile and gently roll her eyes while waving back, never ignoring or making fun of me like some of my friends' older siblings' might do to their own brothers or sisters.
Like our Mother, Kim chose nursing as a career. A perfect match, she is calm in a crisis, compassionate and makes intelligent decisions while chaos is swirling around her. A good example of this came while observing an accident during a family vacation. Mom, who was in her late seventies at the time, slipped and fell, causing a blow to her head and what appeared to be an extreme amount of blood loss. Everyone was in a panic, especially the pool employees, running around like chickens without their heads. Kim calmed the crowd down, gave them a list of what she needed and went about saving the day.
How did she grow into this strong, confident woman? I'm not sure. Who knows how and why humans are shaped and formed? Obviously it is partly genetics as well as environmental, among other situations. Reflecting back, I can recall a few incidents where Kim had the grace of a cool, calm adult but she hadn't even hit her teens. The most vivid experience came on a cold February morning in Minnesota, the year was 1967 and we were all sick with the flu, everyone except Kim that is. Having one sick kid can be a challenge for a parent, so imagine what it might be like having 10 sick kids ranging in age from 3 to 17. My Mother needed assistance and Kimbo was there to help.
Some of us were awake, but still in bed upstairs, a few were asleep, and Kim, along with my Mother was awake in the kitchen making breakfast, including eggs and pancakes. Kim was dressed in her school clothes. Mom tied a rectangular long cloth around Kim's neck to keep her freshly ironed clothes clean for school.
All of a sudden we heard screaming and yelling followed by a scuffle. Don't get me wrong, these kinds of outbursts were no strangers at the O'Brien household, but not usually this early and none of us could figure out who could have been involved since we were all sick in bed. This prompted a few of us to go downstairs to check out the situation. As we stepped into the kitchen we saw our dad practically on top of Kimbo folding her up inside his blanket.
Kim had gotten a little too close to the gas flame from the stove top causing the protective apron she was wearing to burst into flames, Kim began screaming my Mom ran and tried to put the fire out. My Dad heard the ruckus, and for no apparent reason grabbed a blanket, ran to the kitchen putting out the fire with that blanket.
My Dad rushed her to the hospital to eventually find out she had third degree burns on her face, neck and chest. She had a week's stay in the hospital putting her through a painful recovery. When she finally came home she wasn't allowed visitors, nor were we. My parents thought other children might make fun of her so they kept her isolated, letting only us, her siblings to play and entertain. Perhaps this is why I love to try to make her laugh. Kimbo was left with no scarring on her face, but her neck and chest carry a few marks that are unrecognizable unless you are aware of what had happened all those years ago.
Her painful recovery seemed to go so smoothly, mainly because she never complained or felt sorry for herself. She was a trooper. This type of incident would leave anyone with some powerful, life changing emotions. Kim was just eleven years old. I imagine it helped form her into the spectacular person that she has become today.
Another situation I witnessed Kim endure must been the following summer. We had the misfortune of living next to a crazy pedophile who tried to have his way with me and some of my younger sisters. We all hated the guy. One night we climbed his fence and stole a few of his green apples from one of his many apple trees. He caught Kimbo, trapped her under his trailer and sprayed her repeatedly in the face until she couldn't breathe. She finally escaped gasping and crying, but holding her head up high acting brave as hell. She was my hero that night!
I could go on and on about how my big sister came to have the personality and strength she has but I don't think I have enough paper. I just know I'm proud to be her sister.
Kim's daughter gets cancer
July 2010 my sister Kim's daughter Kelsey had been experiencing some abdominal pain as well as being able to palpate a moveable lump in her lower abdominal area. Kim, being a nurse, jumped right on getting her a visit to their physician to see what was going on. The first lab they ran was blood and urine tests to check for pregnancy. The urine culture came back 100% positive for pregnancy. The next two hours were spent trying to find a heartbeat of a fetus that was not there. The blood test came back negative for pregnancy. A gynecologist was called in to do an ultrasound, but the doc was sure she wasn't pregnant because of the negative blood test. The ultrasound showed a giant mass but they were not sure what it was. They were also unable to locate her ovary so they thought perhaps it was a fibroid tumor. Because of their uncertainty, they referred Kim to the Mayo Clinic, a much larger hospital. The Mayo doc thought it was a uterine fibroid or an ovarian fibroma.

Everyone was in agreement that surgery to remove the benign mass was necessary. Most of my Minnesota family members went to the clinic to wait with my sister Kim, her husband Joe and step daughter Erica for the results of the surgery. Prior to going into the operating room, the physician was quite sure that everything was benign and it would be just a routine surgery. It wasn't until Kelsey was on the operating table that they realized this was cancer, a tumor the size of a grapefruit. Devastation was the word for the day. My usually strong, silent, stoic sister Kim and her husband Joe felt as if they'd been punched in the gut. At this point they did not know the stage of the cancer or type. They were just left with this familiar, negative impact of the word cancer. The pathology came back with a stage one cancer called disgerminoma in her right ovary which was removed.
After the initial shock wore off, Kim and Joe buckled down, camped out 24/7 until Kelsey was allowed to come home. Everyone, including Alex, Katie and Frankie, that was able to make the trip to Minnesota to support Kimbo, Erica and Joe was on the road within hours. Kelsey was home within a few days. The Surgeon was sure they removed all of the cancer. It had not spread to the lymph nodes or other vital organs which was also excellent news.
Advice
The best advice I can give you from this chapter is early detection! Kelsey is into Yoga, which helps her know her body well. She did not waste time making an appointment with a physician, which is key in early detection. Know yourself, know your body!

Chapter 37, 2010, Too much information?

Chapter 37, 2010, Too much information?

May 2010, Dr. Bud has decided to take me off one of my current chemo drugs, Avastin, it is very expensive and the insurance company has refused to pay for it, not to mention that it leaves me with a general feeling of death warmed over. There will be no love lost with this drug. It has been the albatross around my neck for the last four months making this news the light at the end of a very long tunnel. Sometimes you just have to try to hold on until a new chemo comes along or your physician realizes a different course of action or you gain a new sense of hope, anything that can lift you up emotionally and or physically. This is another shot in the arm for me. Just like the Race for the Cure gift from my loved ones, it has given me a renewed sense of optimism.

I continue to take the Ixabipalone chemo which was administered a little less than a week ago. One of the many side effects for me from this drug is constipation for at least a week. I've tried many antidotes over the years for this problem because it has happened with every single therapy I've had the pleasure of taking. Prune juice mixed with Maalox worked for awhile but not my favorite, Metamucil, yuk, Senna, gave me a stomach ache, but my current answer to this annoying problem is fiber bars. They taste like a candy bar and I eat at least two a day for a week until things get back to normal, this helps a little but by no means is it the end all, be all of cures for the problem.

After this particular chemo I seem to have acquired some sort of infection for which I've been prescribed an anti biotic. Did you know that some anti biotic drugs can cause the runs? Unfortunately I didn't, which brings me to my next dilemma. I get up, take my shower, eat my fiber bars, take my anti biotic and run out the door to meet with a brand new personal training client.

This is his first day which means he is filling out forms and answering a lot of questions about his past workout history and his goals for the future. Toward the end of the interview I start to get massive pains in my belly. It may be gas but I try to ignore it because I want to be polite and not take off running to the bathroom, and of course my week of constipation isn't up so I don't take the pain too seriously, couldn't be anything more than gas. Unfortunately my symptoms keep getting more severe forcing me to excuse myself for just a moment. Apparently the process of standing up motivated my bodily reaction to lightening speed. I found it difficult to make it to the locker room, partially because my backside became a vice grip making my legs turn into toy soldier sticks just barely inching my way to the locker room. As soon as I opened the locker room door the flood gates opened. Yeah that's right, I shit my pants. At this point I was far too shocked to know my soon to come absolute mortification. Gradually, because this is the only speed I could move, I made it into a stall and just stood there for a moment in my downright deer in the headlights mode.

This is what I call my "What the F? moment" What was I going to do? First, I thought, thank God no one is in here. Then the thought occurred to me, how the hell do I get out of here and what about my poor client just sitting there waiting for me? I couldn't go back out there. I don't have a phone and there isn't anyone in the locker room. Finally after what seemed like an eternity I heard someone come into the locker room. I asked them if they could get my coworker Kristie to come in. She immediately followed and took charge of informing my client that I could not return to the interview. She then set out to help me in any way she could. Another coworker, Mary Jo also came to offer assistance. It was just one big pity party in there.

I refused to come out of the stall until I and everything else was cleaned up. This took some time. Good thing I grew up in the ERA of the cloth diaper so I knew what to do with my clothes. My coworkers called Mike to bring me fresh clothes and towels. When he got there we just sat in the women's locker room for a moment in silence, he looked so sad and worried for me. After bagging up my sink laundered wet clothes he took them home to wash.

I spent the next half hour showering and mentally preparing myself to walk out the door of the locker room and fitness center. I then realized I didn't have the keys to my car. Mike had taken them along with my clothes and had already left for work. Alex and Katie were both still sleeping but after several tries I woke them up to come and get me. They wanted to know what was going on, when I told them I pooped my pants they both burst into hysterical laughter, partly because I told them in a funny way. They laughed out loud the entire way home which made me laugh and of course this prompted me to make the story as funny as I possibly could. This reaction helped put the entire incident into perspective. I could handle what happened to me in a much more positive way if I put a funny spin on it.

When I got home I called my mom and dad to relate the story. Dad commented that it wasn't a big deal and he poops his pants at least twice a year. My reply to him was, "the difference is, you are 83 years old and I'm only 53. Old people and babies shit their pants, not 50 year olds. That's why they make depends and diapers." We laughed our big belly laughs and everything was all better. Instead of an embarrassing story this can now be an amusing bump in the road. Laughter and a good sense of humor saves the day once again.

June 2010 Back to the hospital

I keep going into these bouts of chills where I can't get warm. It's like a chill you get when running a fever but I don't have a fever so I don't know what's up. Michele, who is a Nurse Practitioner at the clinic, and fabulous at her job by the way, as well as the rest of Dr. Bud's staff, asks me to come in and get lab work done along with an exam to see if there are any physical symptoms. Initial blood results were fine, the exam showed nothing, but there were a few blood tests that would take longer to get back so I was sent home. Over the weekend I continued to go in and out of chills and finally did have a fever by Sunday evening.

By Monday I felt good enough to teach my early morning classes. My phone is turned off while working of course to avoid distractions. When it was turned on again there were three, count them, three voicemails or messages from Dr. Bud. This must be serious, I thought. Apparently the other blood tests were indicating a staph infection was present. Dr. Bud urged me to get to the clinic right away. By the time I listened to the messages I was on my way to another doctor appointment for Katie and Frankie. I opted to go to their appointment first before I went into the clinic. I didn't think it would hurt. What's another hour, right?

As soon as I made it to the clinic I was admitted. My port was infected. This is the device that was put in July of 2003 to make access to my veins much easier for chemo and blood draws. An IV anti biotic was administered immediately. Surgery to remove the port would follow but would have to wait until I was in stable condition, no fevers, etc. Within a few days the old port was out and a new one was installed. This hospital stay would last just shy of a week taking me into my 7th anniversary of life. We celebrated this momentous occasion in the hospital. No chicken and beer this time, just the family, excluding Alex, because she is working and living in Columbus this summer, Cindy and her husband Bruce were also in attendance. Even though I was in the hospital I was grateful to be here once again for this special anniversary.

When the weekend strolled around I was released from the hospital along with my IV anti biotic and a portable pump which would have to stay attached for another six weeks. That evening a home health care worker came out to instruct me on how to change the tubing and the medication bag on a daily basis. The nurse would then come out just once a week to change the needle in the port. The portable pump is small and encased in a fanny pack so I can have mobility. They did request that I not work for six weeks while wearing the pump. That wasn't going to happen.

I stayed home from work for one week. That is all I could handle. It seemed ridiculous to miss work because I felt fine. There was just this needle sticking in me and a fanny pack attached to my side. Working turned out to be fine. The pack didn't get in the way other than one day toward the end of the six weeks I was talking to a fitness center user and I looked down to find the entire front of my shirt covered in blood. All I said was, "Holy crap, I'm bleeding." I walked swiftly over to my coworker Matt informing him of my situation. I told him not to worry, it wasn't a big deal, I knew what the problem was! Matt took one look at my shirt and I thought it was his turn to shit his pants. He looked a little shocked and proceeded to tell me that he would work for me if it turned into a bigger problem. What a nice young man this guy is.

I ran home, switched out my tubing, gave my port a heparin flush and ran back to work all within a half hour I might add. It was one of my proudest moments, soon I was on the phone to my sister Kim, the nurse, to tell her that I'd become a healthcare professional. Recapping my morning to her made me feel like I was wearing a badge of honor.

Advice

Know the side effects of all of your medications, this may keep you from an embarrasing situation.
Don't be afraid to be abrupt if you feel you have a physical emergency.

I can't say enough about having a good sense of humor. Laughter has been a lifesaving gift in this journey of mine. Isn't life all about how you look at it? A less than desirable moment can bring you down momentarily or it can lift your spirits to more understanding heights.

Don't be foolish about taking chances with your health. My delay of an hour to be admitted to the hospital, or going back to work earlier than advised was carefully thought out. I would never do anything to jeopardize my wellbeing. Know your own body and what it is capable of.

Chapter 36, 2010, Race for the Cure

Chapter 36, 2010 Race for the Cure
Alex is feeling frustrated by the fact that my illness is progressing and she can't do anything to help me or to stop it. Her answer is to organize a team to raise money for Breast Cancer and run in the Race for the Cure. This is a Susan G. Koman function put on by many cities in the United States. Alex attends Ohio State in Columbus, Ohio which is where the race will be held. Her boyfriend Steve worked on designing the long sleeve t-shirt for the team with a little help from my middle daughter Katie. The name of the team is Kristy's Krew.
My parents, siblings, nieces, nephews and friends also got involved in purchasing shirts and raising money for the cause. This was going on for at least a month or two before I found out about it. It soon became a competition within our family as to who could raise the most money. I think it was Mike that won that contest in the end, his friends had deeper pockets. Everyone did well raising funds and I believe our team was among the top ten money makers for the race. The race will be held in mid May.
This entire event comes at a precarious time in my life. I'm hitting the bottom of the ditch physically and emotionally. I am tired of fighting and constantly feeling sick, even dying gets old, but I would think, not only for me but for those around me. They never complain or say anything negative to me, but it can't be easy for them either. Day after day I drag myself out of bed, go to work, and teach my classes meeting my daily vocational requirements all the time trying to wear a smile on my face. Each time I walk into a class or meet with a client I say to myself, it is just one hour and I can do anything for an hour. Sometimes you have to be an actress for as long as it takes until it is no longer an act. And then I come home, make dinner for Frankie visit with her while she eats, perhaps I go back to work or to the grocery store and do whatever else needs to be done.
Rarely do I ever shirk my duties and let this illness win. My house still gets cleaned once a week with all that entails. The only thing I don't do is the ironing. Mike's mother is kind enough to come over once a week to tackle that job and I appreciate her for that. She gets frustrated with the fact that I won't let her help me more, but she is in her seventies and doesn't need that additional burden. I contend that if you start letting people do everything for you, you get used to it and become lazy; I can't let that happen. Mike gets home around 7:00 and I make his meal taking a few moments to talk about his or my day and by 9:00 or 10:00 I am ready for a pain pill and bed.
The race is in a few days which means it will be held the 8th day after my last chemo. By that time I hope to be feeling a little better, because right now I don't. As I'm walking the track at the fitness center with a fellow survivor I confide in her that I've been contemplating stopping chemo. I'm scared about making that decision because that would likely mean that I won't survive long after that. I don't want everyone to think that I'm giving up, if there is one thing in this world that I'm all about, it is the desire to make my family and friends proud of me. That is my main motivation for everything I do in life. My friend Toni responded by saying "God will guide you to making the right decision." And then we hugged and wiped away our tears.

Mike made reservations at a hotel just a block away from the race. My friend's Cindy, Sue and Fran followed us down and stayed at the same hotel. The Hanson girls, Joanie, Megan and Amanda also booked a room but would arrive later. After we unpacked and settled into our rooms for a few moments we headed for the Ohio State Campus and Alex's apartment. Fran's daughter Lauren also attends OSU so we walked over to her dorm to pick her up once on campus. Katie and her friend Emily arrived shortly before us and Alex and her roommate Carissa were waiting for us at their home. Steve, Alex's boyfriend came over wearing the shirt they designed for the race team which immediately put me into the crying mode, something I'd do a lot of over the weekend. The tears stemmed from the joy and awe I felt by this gift of love from my loved ones and their friends.
On the front the tee shirt there is a black and white picture of me on vacation in San Diego from 1991. I'm 35, Katie is a baby and Alex is two. My hair is long and highlighted blonde. This is one of Alex and Katie's favorite pictures of me. Actually my likeness to Frankie is uncanny. Currently her hair is about the same length and color as mine was at the time this picture was taken. She struck a pose, mimicking my stance on the shirt to show us all how much we looked alike. It's ironic that they chose a picture of me with long flowing hair given that I've been bald as a new born for years. Those were the days when I had some hair. I miss that hair.
Our entire crew went out for dinner that evening at the Mongolian BBQ in downtown Columbus. It's a perfect place to go for a large group because the set up is buffet style. Each individual picks out raw vegetables and meats moving next to the grill where the cooks, in a flamboyant way, prepare your meal to perfection while putting on a comedic show. After enjoying one another's company at dinner, we went out for ice cream and a stroll near the campus. Our bellies were full and we were tired; it was time to call it a night. The evening was a wonderful distraction allowing me to escape from negative thoughts of my physical condition.
Everyone went back to their homes or hotel to get a good night's rest to prepare for the following day. As we were settling in Joanie and her family arrived and were just going out to dinner. We chatted a few moments and then went to bed. Our alarm went off at 6:30 giving us all enough time to shower and get breakfast before we walked up to the race. As I turned onto the street where the race was starting and ending I was taken over by emotion. All you could see for miles was a sea of pink, from hair to shirts to hats, the color pink was everywhere. There was this positive energy that you felt pulsing through the air. You could almost float on it. Many of Alex's college roommates, Kay, Nikki, Carissa, Sophie and Alaina along with Steve, Emily, the Hanson's, Cindy, Sue and Fran along with the Wetzel family of course, were in attendance, as well as the wife and daughter of Mike's boss, Sophia and Leigha who drove down early that morning. I couldn't stop crying, I couldn't believe all of these people were doing this for me.
This was my answer from God! If all of these people can come out and run or raise money for me or their own loved one's then I can keep on fighting. This is exactly the wind I needed to continue to push me along in my own life. I personally was not feeling well enough to participate in the race but I kept my eyes glued to the finish line where I could hug and thank every person involved on my behalf as they completed the run or walk. Alex was one of the first members from our group to come in, then some of her friends and Steve. Mike, was followed by Katie, Emily, Frankie and the rest of the team as they trickled in one at a time. It was a great spectacle. I hugged each of the girls and Mike at the same time. We all knew how fortunate we were to have this time together. It was magical.
The entire morning was spent at the Race followed by a nap and an early dinner. The weekend was one I will never forget. When we arrived home I immediately set out to send a thank you to everyone involved. It was important for me to let every person concerned know how much their involvement inspired my continued fight:

Dear Family and Friends,
As I sit to write this brief note I fear that my words and expressions will never be able to truly depict how I feel about the gesture of you all buying t-shirts and or running/walking, or donating monies to the Race for the Cure for Kristy's Krew. I am deeply humbled, but lifted up at the same time.
This past year and especially these past six months have been my greatest physical and mental challenge since being diagnosed with the metastases' of my breast cancer. My disease spread while being on one chemo, but has been halted by another, one that has had less than desirable side effects. It is because of the side effects that I have had thoughts of stopping the drug. The Friday before the race I had a conversation with a fellow survivor in regard to quitting the chemo and she told me that God would guide me as to what to do. On Saturday morning as I saw all of you, and the thousands of others running for loved ones', I found the answer to my prayers. You have all given me the courage to continue to fight.
Never underestimate the power of a kind, selfless act. To borrow and rearrange a few lines from my new mantra and favorite song, Soul Sister by Train,
I'd like to put my lipstick stain
on the left side of your front lobe brain
I know I'll never forget you and so I had
To let you blow my mind
You gave my life direction
A soul to soul connection
As soon as we collided I knew it was decided
That you're one of my kind!!
You are all one of my kind, my Soul Brothers and Sisters, Thank you for a gift of a lifetime. A special thanks to Alex who set all of this up and to Katie and Steve for designing the t-shirt.
Love,
Kristy
Advice
Giving up the fight should always be the choice of the one who is suffering. You and you alone will know when and if it is time for you to stop fighting. If this was my time my family and friends would have understood because as you can see I have surrounded myself with many selfless people. Your decision, however, would be yours and yours alone.
Remember that you are not an island; you are not alone in this fight. Sometimes it really does take a community of support to pick you up during your most difficult times. If these people would not have lifted me up at this particular time in my life, I'm not sure where I would be right now.
Always let your supporters know how much they help you. They also need to realize their efforts are not in vain. Be grateful for those who love you.

Chapter 35, 2010, Spring Break

Chapter 35, 2010 Spring Break

Frankie is going to the Villages, the retirement community in Florida, to visit Mike's Mom for spring break with her friend Maria. She just wants to be somewhere warm and doesn't care, not much anyway, that she'll be surrounded by retired people rather than teenage boys. Alex is driving with a few college friends to her boyfriend Steve's parent's home in Florida. They have graciously offered their condo on the beach as well as their home inland to Steve and his classmates for the week. This is very generous of them.

Katie, unlike her sisters, has no plans. She suggests a road trip to Minnesota for the two of us since we are the only ones who share the same spring break schedule. Her motivation for this request, in my opinion, comes from seeing me deteriorate over the past several months. Those who know me well notice a mental burden resting on my shoulders subduing the spring in my step and outward enthusiasm for life. I have felt the need to see my parents due to my current state of health so I agree to the journey. Mike has a lot going on at work and is unable to make the trip and Frankie is still in school which leaves the two of them home to care for the dog.

My cancer is being controlled by the current chemo but at an extremely high cost, not only literally, but physically. The three treatments I've had are some of the roughest yet. It brings back memories of the first chemo after the initial metastasis. Let's just say I'm back to the soldier days of putting one foot in front of the other and pushing myself every single day to survive, to make it through.

Katie and I plan to leave our home around three pm beating our rush hour and avoiding Chicago's as well. Driving into Chicago is always busy but if you hit that town at the wrong time it can add two hours or more to your trip. We are going to stop in Chicago and stay overnight at my friend Jeanne's because I can't drive twelve hours straight and her house is just about half way making it a nice break. Unfortunately Jeanne will be out of town on our way through, but offers her place for the night which I gladly accept. We plan to stay the night get up early, grab a Starbuck's and get back on the road after rush hour again dies down in the morning. The perfect travel plans.

By the way, we do back out of our driveway at exactly the scheduled time, unheard of when Mike is in charge of the trip. Before we pull away I ask Katie to notice the time and the calm fashion the two of us packed the car to an organized state. If you recall, as a family we always fight when leaving for a trip. Mike insists on packing the car by himself and then we wait in the car in the driveway until he is ready to go. I feel packing the car should be a shared responsibility. If you bring it, you are responsible for hauling it in and out of the car. With that we are on our way to hopefully a rewarding adventure.

The drive is uneventful. We talk about school and love interests, not that Katie really has any. There are always boys interested in her, but she tells them right off that she doesn't really date and is a commitment phoebe. They try to no avail to change her mind and then move on without any luck. Katie has a new roommate this semester. The original one left at the end of fall semester. The new one dropped a few items off in the room met Katie briefly and had not been seen or heard from for two months until one day Katie was changing out in the open, because there was never anyone there, and she looked up saw the roommate sleeping in her bed. She was shocked as she ran quickly into the bathroom to finish changing. She never saw the girl after that, but enjoyed having her own space.

We have nothing to argue about other than Katie's choice of music. Unlike my parents, or mostly my dad, I let the kids listen to the music they like rather than them listening to mine. Usually I like their style of tunes if it's some form of top 40 but she has gotten into some nasty rap that I can't bear to listen to. What happened to the feminist movement anyway? These musicians call woman bitches and other derogatory names as well as discuss overt sexual acts in plain English. The music of my era may have had questionable lyrics, but I rarely understood what they were saying or what it meant. There is no question in your mind what they are discussing here. Some songs I just have to ask her to turn off because I can't take listening to them.

We're getting hungry and closer to Chicago at the same time. Katie is in the mood for steak. If we wait to eat until Chicago, we'll have to take out a second mortgage to pay for the meal and we may have a long wait on a Saturday evening. We opt to get off the Turnpike and look for a chain type restaurant which we found after about an hour of driving. Steak was on the menu leading us to each order a different version of it. After just a few bites we put down the forks and knives, settled the bill and walked out. I thought it may have tasted bad to me because chemo makes everything taste different but Katie's was awful as well. Sometimes my frugal ways get in the way of a smart decision. We wasted gas, food money and time trying to save a buck. Going to a Chicago restaurant probably would have been cheaper and much better tasting in the long run. Katie now gets sick at the mere mention of that chain and refuses to eat there again.

Jeanne's warm condo was waiting for us. Finding a parking spot, as always, is a challenge in the city. Fortunately we found one just a half block down from her place which is a cute town home near the freeway and surrounded by many of the conveniences a city has to offer. We always enjoy staying with her. In typical Jeanne fashion she has breakfast items laid out and a list of what all is available to us. The first order of business was to put on our pajamas get into bed on turn on the television. It was late and we were both tired.

As always, Katie had trouble falling asleep and I had trouble sleeping through the night. It had nothing to do with the accommodations because they were perfect but I have a hard time sleeping anywhere but my own bed. By 9:00 am we were showered and out the door briefly stopping at Starbucks for coffee and tea before we hit the highway. Sunday morning traffic in Chicago is fairly light. Thank you. There are about six and a half hours left on the trip. Katie and I are going to meet family members that live in Minneapolis for dinner. This includes Angie and her family, Mary and her son and husband, Kerry and her daughter Rubina. As we arrive we are happy to get out and stretch our legs and walk around. Surprisingly it is a beautiful March day in Minneapolis. The temperature is about 55 degrees, almost balmy for the area at this time of year.

My place at the table is next to Katie and Rubina, Kerry's daughter, the eight year old adopted child from a Russian orphanage, who can be a bit of a pickle. At this young age she is demanding and enjoys having her way. Today however she is quiet and coloring. Her therapist, as she informs me, tells her that coloring calms you down; she continues on saying that she has an anger management problem. I guess I can see that and am happy Kerry is helping her in the way of counseling. Her Mom Kerry looks good; she is still recovering from her own cancer and chemo experience. Her wigs looks great and very natural, I actually thought it was her own hair. As anyone would be, Kerry is relieved to be free of cancer and no longer on chemo.

It is nice to be sitting at the table with half of my family after this long trip. I let Katie order a cocktail to celebrate her own spring break, an extremely small percentage of what she would normally drink if on a break with her friends. The late afternoon meal is spent catching up with everyone leaving out anything to do with my health. This is not a time to get serious or sad but to laugh and cherish this time that we have with one another. By the time dinner is over I am ready to go home, unpack and rest. We hug and kiss everyone goodbye and then head for Angie and her husband Rico's home. Their house is also inviting with clean rooms full of beautifully decorated items including big comfortable couches, attractive views of nature and all the tasty treats you can think of. We visit for awhile longer after we arrive home and then head for bed since everyone besides us has to be to work by 8:00 the next morning.

Angie is a paraprofessional at a local junior high working with students challenged in the homework department. On our way out to a shopping mall Katie and I stop to visit and meet many of her friends and coworkers. She currently doesn't have students in her room and is able to give us the grand tour. Leading us through the halls joking and laughing with everyone she meets. It is apparent that she enjoys what she does, like teach a little Yoga breathing to a student with test anxiety before they sit down to take an exam. She also brings snacks from home for students that don't get a proper breakfast in the morning. Her love and care goes a long way with these kids.

Our next stop is shopping for Katie. Her first question, "How much do I get to spend?" Because her sister's were given money for their trips Katie is allowed the same amount for whatever she wants to get. DSW a shoe Warehouse is one of her favorite stores. She thinks she's Kerry Bradshaw from Sex in the City, on a budget. Katie is in love with shoes. I wonder if it stems from the fact that she had to make do with her sister's hand me down dance shoes. At any rate, she is now all about the Ugg boots and designer heels.

Katie, like a detective, scours the store for the perfect boot, trying on more than I can count. After finding almost the perfect pair she is afraid to make a decision too soon for fear of missing out on something even better at another shop. We move on to many other outlets until it is time to go back to Angie's. Alas there was no better pair of boots out there which means we have to go back to DSW but it is too late and we'll have to wait until the morning. According to Katie, these boots were almost perfect and above all, they were on sale at a great price which is probably why they were gone when we went back, even though we asked them to hold them for us. This was all Katie needed to ruin her vacation. She sulked around the rest of the day until we were driving to my parents, about 90 miles south of Minneapolis and I reminded her why we took this vacation in the first place. It wasn't for the shopping or the shoes, but for a memory of some mother, daughter bonding. By the time we reached my parents she was fine.

Today is St. Patrick's Day, a big celebration in the O'Brien house. Because dad is from Northern Ireland we've always had a family celebration with a good meal and a green cake. When we were young we would do the Irish jig as a family at schools or churches. I remember one such occasion where my older sister Kim, a year older than me, was jigging down the line of us and her little skirt just dropped to the floor, she must have been around six years old. The poor kid was devastated but like a trooper she pulled it up quickly as we all giggled with nervous laughter.

Many people in the town of 18,000 knew of the O'Brien's. Dad owned a Goodyear Store and he had a jingle on a local radio station which went like this; Frank O'Brien the tire man the Goodyear man from Ireland, nobody does it better than Frank O'Brien the Goodyear man. Not only was the jingle famous in our surrounding area but so was the legendary Irish coffee served at 7:00 am on St. Patrick's Day! I'll never forget the evening I saw my dad asleep on the couch at 6:00 pm on a St. Patrick's Day missing our party because of too much Irish imbibing at the store! One positive note, it was the most lucrative day for tire sales. My dad would pull out the Irish Brogue and charm and sell, sell, sell! There is no better salesman than an Irishmen with the gift of storytelling.

Katie enjoyed our St. Patty's Day party with her older cousins, Kelsey, Jack, Sean, Charlie and Alycia who is my niece Angie's daughter but she is same age as Frankie. The two are only four months apart in age but quite different in demeanor. One example of this came to light on a trip to the Mall of America. Frankie and Alycia went on a log ride together at the age of five. This is a ride where they take a picture on your descent hoping to capture the crazy faces people make of fear, exhilaration or excitement, all of which can be quite funny. Alycia looked like a little puppy dog with her head out the window of a car, pigtails flapping in the wind. Frankie on the other hand was sitting up as erect as a board, eyes wide with terror and her mouth open with what must have been a blood curdling scream trying to come out. We still pull that picture out and laugh every time.

Our visit to Minnesota was short and sweet. The side effects of the chemo have been ok and not kept me from doing anything fun with my family. Seeing all of them has given me the lift I needed to keep pushing on with this journey. Katie and I will be leaving in the morning for Chicago. We plan on staying with Jeanne Thursday and Friday but heading back to Elyria early Saturday morning. Jeanne is working on Friday leaving Katie and I to our own devices in the city until 5:00. We are having dinner with friends Denice and Pete when Jeanne and Denice get off work.

We start on North Michigan Avenue closer to the lakefront. Many of the shops on this street are expensive, but fun to walk through and look for bargains. We spend most of the day shopping or at least Katie does. I'm just along for the ride. We stop for lunch, I try to contact my friend Annette who works on this street but I went to the wrong building, go figure, my brain doesn't always work the way I want it to. The weather is beautiful in Chicago today making it easy for us to walk all the way down Michigan Avenue.

As we make our way through the street of stores I remind Katie that there is a DSW not too far away and perhaps they'll have the elusive boots. I was wrong it was at least five miles away but we wouldn't find that out until we were more than half way there. We could have taken a cab but again I am too cheap and getting exercise is always on my mind which means we walk. It is late, almost 5:00 and DSW is in sight. Thank God! My feet are killing me and I am getting crabby along with Katie.

The search begins up and down every single isle. We can't find the boots but there are many other styles Katie tries on. She is getting upset all over again until I walk into my favorite section, clearance, and see a familiar boot. Can this be it? I don't think so because they have two pair in Katie's size. I pick them up, walk over to her and ask if these are the ones? Her sheepish little pout lights up like its Christmas morning while I comment on what little faith she has for everything to work out! This makes the trip a success, not only that but Denice and Pete's townhome is just a few blocks away getting us there at exactly the right time.

Pete is retired at 55 giving him the time to make dinner. He like Denice worked for the City in Human Resources. Denice is still there while Pete enjoys retirement, babysitting a few days a week with his grandchild. Their home is lovely with a balcony running the span of the apartment, boasting granite counter tops and beautiful wood floors. Pete has made pasta with and without meat sauce for those of us honoring Lent. The evening was relaxing with a bottle of wine and quite conversation which we needed because our feet were killing us. We were back to Jeanne's and in bed by 10:00 pm.

The week has slipped by so quickly. Jeanne, being the perfect hostess, makes a breakfast before our six hour drive home. Both of us are glad to see Mike and Frankie upon arriving home. It is always nice going on a trip but even nicer to get home and back into your normal routine. I'll remember the trip with Katie forever!

Advice

Continued survival through a terminal illness will lead you down a path of hills and valleys. Enjoy the hills; pick up steam from them so you have the energy to make it through the more difficult times.

Use memories of days gone by to remind you of how things have been and could be again.

Spend time separately with each one of your children, siblings, parents or friends and give them your undivided attention. You'll learn so much more about one another.

Take a road trip to somewhere fun, get lost in the joy of it diverting your attention from your woes.

Again, exercise, breathe deep, enjoy

Chapter 34, A new chemo and the cancer spreads

Chapter 34, 2010, the cancer continues to spread

The cancer continues to spread

January, 2010 the beginning of yet another new year. The past chemo therapies are not working allowing the tumors to continue to spread in the bone. My left femur, which is the thigh bone, now has a tumor. I can feel it when I teach exercise class. The pain is there looming in the background until I do a squat, an exercise for the thighs and butt, that is when it roars its ugly head in pain. After confirming the presence of the tumor Dr. Budd changes my chemo to Avastin and Ixabepilone he also refers me again to the Radiation Oncologist as well as an Orthopedic doctor to discuss what options are best for me, surgery to stabilize the bone or radiation. The surgical procedure would require putting a pin in the bone making it less likely to break. The bones can become brittle and weak when compromised by cancer, if the thigh bone breaks my mobility would be lost temporarily.

Before going to the doctor I made up my mind that I was not going to have any type of surgery. This would put me down for several weeks which would mean I couldn't teach and I'd need help around the house with basic daily tasks and activities. I'm not interested, but I'm willing to listen to what the doc says. It is bad enough that my health continues to deteriorate; immobility would probably send me over the edge. During the Orthopedic exam, the physician commented on my excellent flexibility, agility and strength. Yoga and other combined exercise are responsible for those benefits, thank God for that good news. This is why I exercise even when I don't feel like it, the positive aspects are too many to ignore. We discuss my options and both agree that surgery probably isn't the best one. He let me go with the understanding that I would not participate in high impact aerobic type exercise like running and jumping. I agreed. My next stop would be a visit with the Radiation Oncologist. We set up a time in February for one large dose of radiation to the tumor in the thigh bone.

Unfortunately the procedure is scheduled for the same day Frankie is making her Confirmation. This is a Sacrament where a parishioner confirms their faith in Catholicism and commits to it as their faith going into adulthood, an important time in Frankie's religious life. It is regretful but necessary that I have to have this treatment on the same day, but we'll make due.

Frankie's best friend and our next door neighbor KK is Frankie's sponsor for the event. Alex is unable to be here because of school but Mike, his mom, Chuck, Katie, Frankie's good friend Maria and me are in attendance. The students proceed into the church at 7:00 pm sharp, as I watch full of emotion the effects of the radiation performed on me earlier in the day are about to come to a crescendo. Thankfully Frankie and KK are several pews ahead of us and are unaware of my departure to the restroom where I spend a good portion of the service throwing up. Katie came in to check on me making sure I was ok and to escort me back into the church when I was ready. Again, I am in my pew in time to watch the Bishop, the clergy that performs the service, confirm and bless Frankie along with the rest of the participants just prior to the service ending.

Frankie, Katie and friends had fun after the ceremony laughing chatting and posing for photos they would eventually put on their Facebook pages. Unfortunately, some of their pictures were in front of the Stations of the Cross and not exactly appropriate for a church but they didn't notice and I was too sick to make the observation. All I wanted to do was avoid people and conversations for fear of getting sick again. This behavior may have come off as rude or unsocial but for me it was all about witnessing this important moment in Frankie's life and making it through the night.

The cost of chemo

Today a statement arrived in the mail for the first treatment on these new medications, Avastin, Ixabepilone, all the pre-meds, blood draws and a Neulasta treatment to the tune of $70,000. I almost died right then and there. After investigating I found out later that this cost was negotiated down between the Insurance Company and the Clinic, to about $28,000 every three weeks, but come on. How can that be?

How ridiculous is it that one treatment costs so much money? Many people don't make that in a year and this is the charge every three weeks. Thankfully insurance covers most of the charges, but how long are they going to want to pay that? The expense of this illness weighs heavily on my mind, whether it is my money or the insurer's, the cost is mind boggling. Again, I realize that it can take up to twenty years to bring a drug to the point where it is FDA approved, but these circumstances concerning price would probably keep those drugs out of reach to many people.

All that money and I feel like death warmed over. Gone are the days of feeling better for a few weeks between chemo sessions. There is some relief after the first week, but not much, this treatment leaves me feeling sick most of the time. It's hard to take. And I find myself wondering how long I'm going to be able to do this. Family and work, as always, are my priorities. Like clockwork I show up for those two main concerns. Bedtime, my favorite time, comes a little earlier these days just because I get a break during sleep. I'm in bed by nine and usually up by six. If I didn't have these commitments to push myself forward would I still be doing this? Who knows? Luckily I don't have to think about that too much because I do have them. I am grateful.

Advice

Look at your medical options and hopefully you will have more than one to choose from. Consult with your physician but make an educated choice as to what will work best in your own life.

Always include the affects of a decision on your mental outlook. If your spirits are compromised for an extended period of time your fight for life will become more difficult.

Exercise!

Put your own feeling of pain on the back shelf if need be for a short time to experience an important event for a loved one. It is well worth it.

Keep making commitments that you have to show up for, that action can help you move forward as well as take your mind away from your less than desired physical and mental state.

Chapter 33, When it pours it Thunders, 2009

Chapter 33, 2009, when it pours it Thunders
Dick passes away
Dick has not gotten any better which prompts the medical facility to move him to a long term care for patients on a vent. There are three rest home type places to choose from. The nearest is 30 to 40 minutes away. The furthest is an hour and a half and there is one in between those two. After looking into all of these we chose the home with the best reputation in successfully removing patients from the vent. The institution, however, would not accept Dick because, according to previous reports from the hospital, he wasn't motivated enough to get off the machine. We then chose the closest one enabling us to make daily visits.
The month is now February of 2009. Dick has been moved to the new establishment and placed in a room with a gentleman that is worse off than him, if that's possible. By day he gets more and more depressed. All he wants are pain meds and sleep. The respiratory therapist comes in once a day to encourage Dick to engage in conversation. This involves exchanging a piece of plastic from the tracheotomy cuff which enables him to make sound. There are days he is interested in engaging in conversation and others he is despondent and won't try. He is at least able to say how much he dislikes this place and wants to move back to the previous hospital, which he complained about whenever he had his talking piece in. Unfortunately, Dick does not understand that this is not possible, the hospital steps you down to a lower care facility because you still need constant medical attention, but it is no longer urgent.
The staff thinks moving Dick to another room may help his mood. His new space has more light and you can see trees out the window. This is a positive change. He was alone for a few days but soon gained a roommate. This gentleman is at least 15 years younger and although in bad shape seems to improve rapidly. Within a month the roommate, Steve, was talking and telling his story. He too went in for a minor surgery but ended up being vented because of complications with him physically, he was a grossly overweight smoker with poor lung capacity. On many occasions we would end up talking to Steve because Dick was unresponsive and Steve, unfortunately, rarely had visitors. Now that we had created a bond with Steve he became Dick's advocate for care when we couldn't be there. Upon entering the room we'd hear reports of what the staff did or did not do that day. The worst news being that they left him lying in his own feces for at least 6 hours, or that Dick had to be restrained because he had pulled his breathing tube out of the tracheotomy collar and they were slow in responding to put it back in. Heads did roll on the bad news days. Mike stormed into the manager's office for answers to this lack of care. After that, attention to his case would improve, but Dick would not.
The worst times for me are the Fridays I have chemo. I'm sick and tired after a day of treatment, but because Mike comes to my appointments and we have not been to visit Dick all day, we stop on the way home from the clinic. This is when I subconsciously let the thoughts of my own mortality creep in. I'd face the thoughts of fear about my own death. I'd let everything get to me on these days from feeling depressed by watching someone you love withering away in an awful environment to heightened awareness of the slight yet almost constant stench of human waste from incontinent patients. My imaginary blinders would go up as I walked past all the other rooms of vented patients, some who had been there for years. These were the days I'd say to Mike, "If I'm ever in a position like this, I want the plug pulled immediately, do not let me linger." After the side effects of chemo would wear off my positive attitude would return.
By March 2009, Dick's health continues to deteriorate. Mike realizes that his dad isn't going to get better. His brother Bob comes from Oklahoma to see his father and to discuss with Mike plans for removing him from the machine. Dick has a living will asking not to be kept alive through artificial means if there is no hope for what he would call a normal life without the machine. There is also a do not resuscitate order, meaning if he stops breathing don't make any heroic efforts to bring him back. Mike, along with his brother Bob make the decision to take their father off the machine. We turn to a very dear friend named Joanie, who manages a hospice, for guidance. We've known and been friends with Joanie and her family for years. Her son Greg went through school with Alex and her daughter Megan played volleyball and attended school with Katie. Their oldest daughter Mandy was always a spectator at the sporting events along with their dad Greg so we got to know the entire family well. Joanie is a kind and compassionate person dedicating her life to helping others. She is also a take charge, do it right, task master. I knew if anyone could help us it would be her. I value and trust her opinion.
We, along with the hospice team, and the Doctor have discussions regarding the process of taking a patient off a ventilator. Joanie and Dick's caseworker Lynne sit down with us to explain what will happen once the machine is turned off. Medications such as morphine are administered for comfort so the patient doesn't feel pain or fear from not being able to breathe. If Dick were to live for any extended period of time he would be taken to their hospice facility. All of the professionals indicate that once he is taken off the machine he won't last more than a few hours. Mike and Bob decide to take Dick off life support on April 1st at 10:00 am.
On Sunday March 29th I start to feel very ill, and have a fever of 102 which prompts us to go to the emergency room. There is an infection somewhere in my body which is causing the fever and my white blood counts are not high enough to fight the infection so I am hospitalized. My stay lasts over five days which means I can't be with Mike when he removes his father from life support. Mike's brother Bob and wife Mae are playing a waiting game since their family leave or vacation time is limited. They can't be here when he is removed from the machine because no one knows how long he will last and they want to be present for the funeral. Bob said his goodbyes to his dad on his last visit.
The first is on a Wednesday so Alex came home on the weekend to say goodbye to her grandpa and Frankie doesn't feel she is emotionally strong enough to see Dick removed from the machine so she also said good bye a few days before the event. Katie, along with Mike, the nurse from the facility and Lynne from hospice are all in attendance for the removal.
Once Dick is taken off the vent everyone just waits, the nurse checks on him intermittently while Mike and Katie take turns holding Dick's hand, shedding a tear or just waiting and watching. Within a few hours Dick had passed. Mike called us one at a time with the news. I ask him how he is and he replies "I'm ok, sad, but ok." then I breakdown in quiet tears hiding my emotions from the hospital staff occasional milling in and out of my room. Katie left to go back to class to tell Frankie and get her out of school. While driving home she called her sister Alex at college to talk, during all of this Katie was stopped by the highway patrol for speeding. She quietly took the ticket without explaining the emotional trauma she had just been through with her Grandpa. When she got back to school she went to Frankie's History class to give her the news and take her home. They then both cried in each others' arms. That day the girls and Mike came down to the hospital so we could be together and comfort one another. Alex was just a phone call away which made it easy to include her.
The next day I was released from the hospital. The trial drug was not working for me any longer because my cancer had spread not only to the bones in the lumbar area but the thoracic region. After a four year long stint I was taken off the drug. At a later date we would discuss the doctor's next plan of attack. We were too busy thinking about the service and everything that had to be done with that. Mike had taken some time off work to plan his Dad's funeral. The viewing was on Friday and the Funeral was held Saturday followed by the burial.
Dick was a career man in the Air Force. His funeral and viewing were held at the same establishment. Many of our friends, family and neighbors are in attendance. The Donahue's, who live next door or Frankie's other family as we refer to them, are there like they have been at every other function we've had over the years from graduations to birthdays. Their presence means a lot as does the attendance of many of the friends and family I've spoken of throughout this journal.
The burial was at a military cemetery several miles away. It was an awful early April day with cold blowing wind and rain mixed with snow. We, just family and two of Dick's friends, sat outside under a covering for the short burial service which ended with a 21 gun salute. He would have liked the pomp and circumstance. I felt sad that he was gone but happy that his spirit was free from his ailing body, the rest home and the machine that was keeping him alive. Now he could soar with the wind and be happy again. Rest in Peace Dick.
Alex's friend loses her mother to Breast Cancer
A few days after Dick's funeral Alex's close friend Erica from college lost her mother to Breast Cancer. Her Mom was younger than me and this was her second bout with cancer. She fell victim to cancer at a very early age, but because of her awful ordeal with chemo the first time around she decided to forgo those types of treatments. She survived about a half year after her diagnosis. Erica and I exchanged emails on occasion In regard to her mother's condition as well as Erica's feeling about what was going on with her Mom. Being there for her through emails was important to me. It broke my heart not only for her, but thinking that my girls may be going through the same situation one day, if that happens I hope someone's mom is there for them. Erica is a special talented young woman who flourishes at college sports and academics. Her mother would be so proud of the way this young woman has handled everything after her loss.


I start a new chemo
April 2009 Dr. Bud puts me on a new chemo called Exemestane. The usual suspects appear as side effects, nausea, hair loss and fatigue. I continue to work and workout. My Yoga schedule has increased at the college. I'm now teaching three one credit hour classes giving me six classes a week. During my stay in the hospital a sub fills in for me. Being back at work is a Godsend! The Yoga feels like medicine to my mind helping me maintain a positive, uplifted attitude but at the same time strengthening me physically. While talking the students through the relaxation portion of the class I also try to visualize positive healthy energy flowing through my body to heal me. Yogis believe that the breath and how we breathe is the key to health. Deep abdominal breathing through the nose is one of the many necessary components for good health. Studies have shown that lack of oxygen is a factor in the cause of heart disease, stroke and cancer. Take a moment and breathe deep for your health.

My brother Brian is rushed to the emergency room
It was early May, Mother's Day weekend and my brother Brian who lives in Arvada, Colorado spends the day playing golf as he always does most weekends. He came home and got busy grilling tuna steaks for a cookout that evening. After dinner and some relaxation Brian began having a severe stomach ache. Brian, not being one to go to the doctor, or, God forbid an emergency room, waited until the pain became so severe there was no other choice but to go in.
Once admitted they ran tests and found the cause to be E coli. They decided to do surgery and search his entire digestive tract to look for tears or holes but found nothing. His body then went into septic shock. This is a life threatening condition generally stemming from leaking fluid but again they couldn't find any ruptures which just added to the mystery because this type of outcome is most often the result of blunt force trauma or a surgical mishap. He was then vented and put in a drug induced coma. Rhonda, his wife was now in shock, just a few hours earlier Brian played 18 holes and made a lovely dinner for the two of them. She phoned Brian's grown children, Heather, Joseph and Ryan as well as my parents. The kids came to the hospital for support trying also to make sense of what was going on. Mom and Dad in their late 70's and early eighties, packed their suitcases and drove the twelve hour trip from Minnesota to Arvada to see their son. Brian, in the first week of his hospital stay, like Dick, now existed because of a machine but Brian is only 57 years old.
When I heard the news my reaction was calm shock, it was too surreal. If I let this information seep too far into my brain I might breakdown. This is when I realized how good I had gotten at compartmentalizing my thoughts and emotions. Dealing with these feelings of grief, fear and loss in regard to not only Brian, but the death of Dick and the advancement of my cancer was a must. I knew I had to and eventually would deal with them, but not right now. The reaction would come but only when I was ready and could handle it. It's important to keep my focus at work and with the girls. The semester will be over soon and Katie will be graduating in a few weeks. This is the time I will let all of the emotions in or out. My sister Angie has set up a sight on the web called The Caring Bridge. Here we can get updates as to how Brian is doing. We can call as well, but instead of his already stressed out family repeating themselves 10 times a day to family members all over the country, we can connect through the web site. This tool was a wonderful idea and so nice of Angie to think of it.

May 2009 Katie graduates
A bright spot among all of these tragedies is Katie's graduation from high school. Even though Brian is sick I need to focus my attention on Katie for a few very important days. My second daughter is now preparing for her commencement day. How poignant this time is to be able to see another child of mine through high school. She has had a good run at Elyria Catholic like all students, some good times as well as bad, but is now ready to move on to Akron University for college. We are off to buy a white dress to wear under Katie's white graduation cape. The robe is white and one size fits all which means if you are very tall or short you are "shit out of luck", Katie is just five feet tall, she fits in the s-o-l category. The dress underneath has to be white so it won't show through the cape. This takes forever to find but eventually we are successful. Thankfully she already has shoes which are white as well. They are platform sandals that take her height up about four to five inches.
The day before the graduation ceremony we again, like we did with Alex, have our party for Katie. The usual people are in attendance, many of our neighbors, my friends Cindy and Bruce, Mike's Mother and her friend Chuck, my parents who have left my brother's side to be here, Jeanne's nephew is also graduating so she is not here, many of Katie's parents' friends' whom we've gotten to know over the years are here, a very fun group I might add. There are also college and work friends, in addition to Katie's friends who populate the garage, yard and house. The menu at Alex's graduation was met with success so we prepare many of the same foods. The day is busy, fun and exhausting; it ends around midnight, way past my bedtime.
The day of the ceremony we arrive a little early to ensure a good seat. The students begin to file in wearing their white gowns. Katie looks so tiny inside her white cape, like the little kid I used to know wearing her father's tee shirts from high school at the age of three. Katie actually made the "tee shirt look" work; she was a style star even then. This little girl also changed her hair style constantly. In kindergarten I'd take her to school with one hairdo and she'd walk out at the end of the day with another.
Katie, unlike her sisters had no problem separating herself from me. It was August 1993, Katie's first day of pre-school. This was the same school Alex attended. Their rooms were next to one another. Alex held my hand as long as she could, as I let go she would look back at me longingly with those huge brown eyes forming crocodile tears, stretching out her arm, hoping I'd pull her back. Katie on the other hand, dropped my grip like a hot potato practically bolting into her room, yelling "see ya." At the end of the pre-school morning Alex would dash out of her room smiling a little more now while Katie had a tendency to linger surrounding herself by her two, new best boyfriends, Joey and Max. This kid was a boy magnet even then.
As the students complete their procession into their seats on the floor of the coliseum Katie finds herself without a chair, the only one standing. Someone quickly finds her a seat, making up a row of one which didn't make her happy, but the ceremony was starting motivating her to sit. This class also plays a recording of quotes from each student, my favorite part of the day. Katie's quote is, "Life isn't about finding yourself, it's about creating yourself." This is fitting for Katie, with each day she becomes more confident and creative with not only her style but with her life. She also thanks me and Mike for everything we've done for her.
After the ceremony we file outside and take a few moments to take pictures. Katie is like the director grabbing her friends or family for pictures barking orders to me, her dad or sisters to snap the shots. We chat with other parents or graduates while watching the kids cherish their last day at this school. Katie and her friends are smoking celebratory cigar type cigarettes which sets my dad into lecture mode. He was a smoker for at least 50 years and doesn't want his granddaughter to acquire the bad habit. One of Katie's friends Emily seeks me out for a picture of the two of us which I found touching and thoughtful. She has been there for Katie during some good and bad times as have her other close friends. We finally head home for leftover food and rest. Katie leaves to enjoy graduation parties with her friends.

June 2009 Brian loses his battle with life
After a week Brian was taken off the vent which I thought was a good sign. Within a few days he was put on full dialysis because his kidneys were not functioning properly. The staff tried to wean him to just a few hours a day to no avail. His kidneys and liver started to fail at which time he also developed a staph infection. He was in extremely bad shape. My sister Angie called informing me that Brian was dying and we all need to get out there to see him. I flew out, by myself, the next day. I met my sister's Mary, her husband Pete and son Jack, Paddy, Alice, and husband Martin, Kim with husband Joe and daughter Kelsey, Maureen and husband John Angie, with husband Rico, and sons Sean and Charlie and Kerry with her daughter Rubina. Some of us along with families stayed at the same hotel. My sister Maureen stayed with her son Tony and wife Christian who live there. Mom and Dad were back out there staying with Brian's wife. Shane his wife Amy and his three children Erin, Sam and Shea drove from Arkansas while Brendan, the last of the kids to arrive, drove from San Francisco.
Most of us were able to spend a few days visiting Brian at the hospital. We spent our time in the waiting room or in his room or walking the grounds and park outside the hospital. It gave us all cherished moments as a family to gather and bond with one another. Our brother was dying and the comfort we sought came from our family either verbally or physically, just by hugging, holding hands or simply by being in the same room together. Brian was conscious at times and able to communicate a little bit. Brendan was the last sibling to arrive he got there just in time to say goodbye. At one point we all stood around his bed holding hands praying and the radio started playing the song that we played at my Brother Kevin's funeral. We took it as a sign that he was there with us as well. The last week of Brian's life his kidneys completely failed and his wife and kids took him off all life saving procedures; he only had a morphine drip. On Friday morning, June 5th 2009, Brian died, his daughter Heather was the only one in the room. She told him it was ok to go, she assured him they would take care of each other and quietly he stopped breathing.
When Heather walked down into the lobby someone was sitting at the piano playing Somewhere over the Rainbow, a favorite song of both her and Brian. We were all called to come to the hospital. We saw him for one last time and he was then taken to be cremated. Mike and the girls immediately flew out when hearing the news of Brian's death as did my niece Angie, her husband Tim and daughter's Alicia and Boston.
The Irish Wake
The funeral was held over the weekend at Brian's favorite Golf club. His oldest son Joseph led the ceremony; he was joined by his pregnant wife Jaime with their first child, one that Brian would never meet. Everything about Joe that day reminded us of his father. It was astonishing to me that he had so much poise while speaking after just losing his dad. He was funny yet serious as he spoke of his heartfelt experiences he had with Brian. The Irish like to laugh and rejoice at a wake, of course there is sadness, that goes without saying but they rejoice in the person's life and what it meant to everyone involved. To me, that is important. His oldest daughter Heather and husband Josh spoke, Brian's youngest son Ryan, being the sensitive one, could not get up and speak. We all basked in the moment feeling the love and admiration each one had for their Father.
These grown kids did a fabulous job remembering their dad. We laughed and cried at the same time. My Dad got up and spoke as well, which was moving. He talked not only of his fondness of Brian but about the fact that he has now lost two sons. My niece Kelsey sang a favorite song of Brian's, Here with me by Dido. She has become a songbird using her voice to communicate how beautiful sound can be. Her parents Kim and Joe along with the rest of us are now allowing the tears flow without hesitation.
Other friends and family step forward to share their thoughts on Brian's zest for life, his easy way of communicating with others and his sense of humor making it a poignant, sad afternoon. The bagpipes chime in with an Irish song bringing the house down, so to speak. After the funeral everyone was first invited to hit a few balls on the driving range and then partake in a full meal at Brian's home. If he were there he would have prepared the entire meal by himself knowing it would be delicious. Cooking was his passion.
My entire family pitched in to help prepare Brian's "secret" spaghetti sauce, an all time favorite. He had just recently given this recipe to his kids, prior to that time, every ingredient that went into any of his recipes was a guarded secret. The kitchen and house were crowded with people, laughing, crying and drinking. You can't have an Irish wake without cocktails and the booze was flowing. This is when I realized that Katie had built up a tolerance for alcohol. She had more than a few drinks but was acting pretty normal. I would have been drunk after three or four. The college age kids were drinking and celebrating Alex's 20th birthday which under the circumstances, didn't get the attention that birthdays usually do, the high school age family members, were trying to grab sips here and there hoping their parents wouldn't catch them, Frankie was the bartender and Erin, the niece who looks like an Abercrombie and Fitch model, is too young to imbibe but almost too old to play outside with the younger set so she wandered back and forth trying to find a place to fit.
I was sitting outside watching my younger nieces and nephews playing when my youngest brother Shane's twins Sam and Shea asked me to take my wig off, when I gave them a laughing no, Sammy took this as, I don't think she really cares, so he quickly grabbed it and ran down the street waving it in the air giggling with delight. I told him it was a good thing none of the adults were outside or he would have been in big trouble. To tell you the truth it was pretty funny and a welcome diversion. Funerals are an enigma, there can be so much joy and happiness packed into the sadness and loss. Soon we'd all leave for our individual homes keeping the memories of this special time about this special person, my brother Brian, close to our hearts.
Before, during and after Brian's ordeal I could feel the constant pain of what I knew was the cancer that had spread in my bones. Each time the pain would appear I'd push the negative feelings out of my mind. Thoughts of my own pain and perhaps death kept crashing in almost like waves. They'd rush in and I'd mentally push them out. How could my family deal with yet another loss? These negative feelings gave me the strength and determination to hold tight onto to my own life. My Dad must have suspected something was up because before he left for his home in Minnesota he took me a side and in his most serious tone said, "I cannot deal with yet another child dying before me, you better hold on until I kick the bucket." With that we both let out a teary smile and I promised to give it my best shot.
My six year anniversary
On this day I am again celebrating my life while letting myself now mourn the loss of Brian. I'm reminded of how worried he was about me upon my diagnosis and now he's gone, but I'm still here. You never know when your life is going to end. Appreciate the time that you have even though there are times it feels like drudgery. I hate to say this but life can just plain suck sometimes, however, being torn from it when you are not yet ready to go, sucks even more. This is the third person in my life to pass since the inception of my disease, Della, Dick and now Brian. I make sure to cherish this day and every day. Funerals remind us to appreciate the life that we are given. As we sit at our celebration tonight we remember all those that have passed over the last few years and give thanks.
My oldest sister Kerry is diagnosed with Breast Cancer
July 2009 Kerry finds out she has Breast Cancer. She is at a stage two with lymph node involvement which means a mastectomy is involved. Kerry is working full time, going for her PhD as well as raising her daughter by herself. Her stress level is high to say the least. She is a strong capable person and seems to be handling herself well through this ordeal. The operation was successful in getting all the cancer which had progressed to a stage two level. She seemed to have a harder time on chemo than I did at that stage of my illness. There were also other life complications which challenged her such as being a single Mom and the sole provider. My situation was much easier than that. I had Mike making most of the money and being there for the kids if I couldn't be. She does have good friends and family near her who help on the most difficult days but still, she had a lot of pressure.
Putting her schooling on hold was something Kerry did not want to do, but found it necessary. There were times when she wasn't sure she'd make it, but proved to herself that she was far stronger than she thought. Adversity gives us the strength we need to push through some of the worst situations only to come out triumphant. As a side note, the O'Brien's are built emotionally tough enabling them to weather some of the worst storms. I know she'll be fine.

Katie goes to college
Here we go again! Katie has spent her summer attending graduation parties of classmates and is finally embarking on her next stage in life, college. Alex starts a month later than Kate so she is able to come with us to move Katie in. Unlike Alex's experience, Katie's dorm is a renovated hotel further away from the hustle bustle of the main campus. There were not hordes of students or parents jockeying for parking spaces, elevators, etc. The school Katie is attending is much smaller making the move in faster. One bright spot, a bathroom inside the room complete with a bathtub, you don't see that every day in a dorm room. The space is also much bigger than your typical dorm room.
When we get up to the room Katie's roommate, her mother and her boyfriend are already moving in. We open the door to them silently putting her belongings away while the roommate silently cried. It was like a funeral or something. My first thought was, this is a very bad sign. The O'Brien Wetzel family is loud with laughter or squabbling while putting everything in its proper place. And this family was as quiet and solemn as church mice. I find myself praying that this is going to be a good fit.
Katie is an absolute perfectionist and a clean freak so she was directing traffic as to where her belongings should go and what we could and could not touch. For instance, you can't sit on Katie's bed if your feet are dirty, actually she'd really prefer you not sit on her bed at all. Thankfully Mike had an easy time getting her computer and printer up and running. Once everything was neatly stored we set out to explore the campus and get something to eat. Mike of course stopped in the bookstore and bought sweatshirts with the school logo for everyone while Katie picked up her books, etc. We checked out the brand new recreation center which was beautiful. The equipment was new, it was clean and there were several sections of gym where basketball and volleyball games were going on. After our tour we walked Katie back to her room and said our goodbyes with just a few tears, from me of course. On the drive home my thoughts were filled with Katie growing up making changes and becoming this now capable young woman who I am so proud of. Later that day Katie and her roommate got their schedules and walked the campus preparing themselves for Monday's classes. Maybe this roommate situation will work.
Various Chemo and Radiation treatments
July of 2009 I was put on a different chemo because of the progression of tumors in the bones. This chemo is called Fulvestrant. My physician thought it would be a good idea to try radiation to the tumor in the fifth vertebrae in the Lumbar region or L5 as it's referred to in reports. Radiation can stop the growth of the tumor as well as alleviate the pain. After meeting with a Radiation Oncologist a time is scheduled for a one time zap of radiation. Generally you don't mix radiation and chemo, but most radiation schedules are drawn out for several weeks giving the patient small doses. Because I'm currently doing chemo they are going give me a onetime, higher dose. The radiation made me so sick, worse than chemo. I already had a headache prior to the procedure but soon after I was done the headache progressed to a migraine and I began throwing up. The side effect lasted about a day and then I was fine. Thankfully this procedure was successful is reducing the pain.
Over the next several months up through December of 2009 the cancer would continue to spread causing yet another change in chemo, this one called Vinorelbine and additional radiation treatments to the thoracic spine, 5th right rib and T1-T6 vertebrae. In this treatment the radiation dose was reduced which meant I had one every day for two weeks excluding weekends, 10 in all, keeping the negative side effects at bay. I'm teaching an exercise class to a group of people from a local company at 7:00 am. Toward the end of their eight week session I start to feel a familiar and unsettling, nagging sensation in my left femur. There is no doubt in my mind that it is the cancer. Christmas is upon us and we've had such a bad year. I decide to keep the information to myself until after the holidays. Our family needs a break from all downbeat situations. Christmas is heartwarming this year. More attention is paid to our relationships and our love for one another than the anticipated excitement over the gifts we are giving and receiving. Mass is crowded with dressed up people enjoying the magic that this holiday is capable of bringing. Giving thanks is always on the top of my prayer list, praying for others, like my still grieving relatives is second, prayers for those less fortunate is third and last I pray for courage not only for me but for my family to continue to weather this storm of illness.
Advice:
Make friends in the oddest environments. Dick's stay at the rest home was awful, but the kindness we saw from his last roommate, looking out for him even though he didn't know him, showed us the goodness in humanity.
Don't have a year like I've had, but if you do, know that you can get through so much more than you think you can. Look through the negative of a situation to find the pieces of joy and even lessons in them. Yes, the loss of a loved one is horrific but the memories of the interaction of love and closeness we felt at the hospital and the funeral gave us a lifetime of uplifting memories and something good to hold onto.
Take time out to cherish something positive happening in the midst of turmoil. Katie's graduation and entrance to college enabled us to block out the terrible situation and feel only the good for a few precious moments.
Remember that dealing positively with the adversity of an illness takes practice, just like exercise, you are weak when you first start but soon find your body adapting to bigger challenges. Your mind works in the same way.
Take a moment to breathe slowly and deeply in and out through the nose ten times, at least three times a day. It will help your immune and nervous system.