I thought this process was still forward in my story but the reality of the words hit you like a hard cold stone.
How long is “months?” Longer than weeks, but less than a year. Your guess is as good as mine. But who really knows? God? Your hair stands up on your arms and your back. Your eyes swell like bottomless wells. Your face hurts. Your heart hurts because you cannot help but think of all that will change and be lost.
I wish I could change so many things about the future. The loss of control I thought I had of life. It is so hard to say good-bye but there is still more to do.
But I get love from so many people everyday. It is wonderful to feel other peoples thoughtfulness and empathy.
People often compliment on how great of a job I did raising my kids. It is one of the best compliments. It makes me feel so good. I am proud of them. We have five kids ages 22, 20, 19, 17 and 15.
I guess I don’t know how we did it. Sadly, they do no come with manuals, but they are unique they do not come with manuals. They are all different and what works for one doesn’t work for the others.
I am so thankful for their good health and their motivation to do amazing things in planning their lives and helping me plan the end of mine. Preparing to say good-bye to them is the hardest thing in my life. I hope they will find the strength and peace. Have you thought about how you would do it? What would you do?
I have been blessed with the time to do it. Many people are not. I cry for them. I weep for grandchildren and grandparents who will never meet – especially mine. I pray for the spouses who will completely start over with the love of their lives. I can’t imagine if and, therefore, I do not feel like I can help them.
This pain is real. It is worse than any cancer pain that I have had to endure. It is lonely to be out here dying alone. Thank God for family and friends. I don’t know how I would have done it. It’s quite lonely on the path knowing you cannot take others with you. But, they have big amazing things to do and children to watch grow.
I am proud to say that Ben and I did so much traveling with them – very close to hitting all 50 states. Nature and history and beauty is priceless. I hope they will be able to keep traveling with their families. Do what you can. Life can slip by very quickly.
To all my friends and family, please take this advice and make plans to help yourself but mainly help your family know what you want. Any one of us could die tomorrow.
My first acknowledgment in a published book.
Steps, Family, and Sharing the Love
I ran into this quote the day after David and I went on a college visit to a University. It was quite cold and windy that afternoon. There was a huge stairway to the entrance of the Library with many steps up. I stood there and looked up, David says, “You can do it Mom…just take one step and a time.” of course, I took his advice and made it to the top.
You can see that the steroids have been taking their toll on me since July…eating away at my weight and muscle tone. I raised five kids and was always in shape. So needless to say, this has been difficult on me.
My life has taken quite a turn since I was diagnosed with the Brain METS in July. The last couple of weeks have been full of new issues created by the steroids of course. I started a new chemo therapy in December. This opens a new jar of side effects including fatigue, nausea, low potassium, low white blood cell count and the list goes on and on. A week later, I had an unscheduled needle biopsy. I have grown a new tumor on my sternum so we had to do a biopsy to find the makeup of the tumor as it was the only thing growing after I took the first dose of the new chemo.
Then the next week, I had cataract surgery on both eyes (in the same Day!) The steroids had caused them. I was reminded how young I was to be having this done as I sat in the waiting room full of retired folks. I asked Levi if I had turned 78 or 48 on my recent birthday. I am recovering from everything now. It has been a slow process but I’m working on it.
On the bright side, Christmas was full of blessings with my college kids home. We had a wonderful time together. I had two gifts for them that were total hits! First, I created framed 24x36 United States maps with push pins to mark everywhere in the US they had been, Most of them have been to 42 of 50 states so we did a lot of pinning (picture above). Yes they sell these DIY maps online but they are over $200 each. I created the 6 for us for under $200! They loved them, and it was so fun to talk about all of those vacation memories.
Next we went to go look at the house we lived in for 7 years. No one lives there anymore. We had not stepped foot in there in 13 years. We were all so surprised to see that they had not painted the two bedrooms the kids used. I had painted the barn. All four boys shared the room with two sets of bunk-beds and a crib. It was exciting to listen to them talk about their memories there. David and Lydia did not remember much but still enjoyed.
Happy New Year from our family to yours.
I love the quote about because I believe this is so true. So many people have been helpful and giving to me and my family, I only hope that I can continue to do the same for others.
Yours truly,
Lori
Autumn Blessings
I do love Autumn. It really is so beautiful to watch the sun colorfully rise and set each day. It reminds to be present…as I deal with the continuous cancer changes and brokenness everyday with not only myself but many of me dear friends. Cancer does not care. I am so stuck in a world where I want to pray it all away and I can’t. I feel like the best thing I can do for my friends who are suffering is to pray that they are able to find peace in theirs hearts and the grace to keep going.
Well what a crazy summer I had. Cancer… and I decided to make a lot of changes in my life. In July, I had 14 treatments of Whole Brain Radiation. This was not an easy or pleasant experience. It doesn’t hurt and it only takes 5 minutes to lay there and zap that brain. But that is just it, they are zapping your brain! The good news it that my last MRI shows shrinkage!
While I was doing the radiation, I had to stop doing my chemo treatments that I had started last September. They did me well while they could. Unfortunately, when I tried to go back on that chemo, my body had built a resistance to it, and I have now had to switch a new chemo treatment. I will be doing this new one with Herceptin on week 1, just the chemo on week 2, and week 3 off! I should know if it is working sometime in the next 9 weeks.
So I have decided to “retire” from working. I left my job of ten years and am taking quality time for myself! I am excited to do more national metastatic breast cancer advocate work. I am going to John Hopkins Metastatic Breast Cancer conference with Oncologists and Researchers and other patient advocates in November. I have few writing inspirations I am going to also work on.
I only have David and Lydia home now as the older three are in college. So this also is very different. Rather quiet except for when my four month old black lab gets in her crazy modes.
Life is good! I am okay! Sorry I have been quiet, but there is a lot of processing that cancer leaves with you periodically.
Bring on some beautiful Autumn Blessings!!
Crazy How Everything You Have Taught Yourself to Deal With Can Change So Drastically in 48 Hours.
It has been a while since my last post...December actually! My need and desire to post had slightly diminished as I continued to motor through 10 months of good scans on the same drug!Life was back in order. I felt good and so very thankful for this time! I think I was starting to feel invincible again.
And then in 48 hours, it all changed. This is how cancer works. There are no rules, no manual, no true predictions to count on...only the blank timeline card on your life that you carry around all the time.
I was in Florida with Lydia and a friend and her daughters last week. We had a wonderful relaxing time, but as the week went on, each day I felt worse. I couldn't really explain it and I didn't want to talk about it in case it was real. But I knew deep down inside, something was definitely not right. I was dealing with some dull headaches, dull neck pain that would shoot into my head if I moved too fast, and some strange balance issues. I had no idea anyone else could tell, but on the last night Lydia looked at me and said, "Mom, is it time for another scan?"
We came home on Sunday and I emailed my doctor that afternoon explaining my experiences. She had me scheduled for an MRI at 1:00 the next day. Report came Monday, she called, we chatted, and I was scheduled for whole brain radiation on Tuesday morning. I can't say enough about this incredible woman!
So this week, I have been blindly walking into the world of Brain METS. A cold dark place that I have not yet explored. Basically what this means is that my breast cancer has metastasized to my brain. The purpose and hope of the whole brain radiation is that it will zap (or shrink) all of the spots. Brain METS was really not a huge problem until the miracle of helping women to live longer came with the curse of the cancer metastasizing to their brains. But I am happy to say that much wonderful progress treating this has been made.
So yes, I would like to request continued prayers that the radiation will indeed do what it is intended to do...ZAP! I don't really know what the path looks like from here, but the word that I am getting from other professionals is that this a very hopeful time and that they know many women that have lived for years after diagnosis.
I wish this update was exciting and upbeat, but for now, we as a family will be processing through. Hug your spouses, hug you children, and be thankful for all the crazy chaos on your plate right now! But slow down a little bit and see it, enjoy it, live it!
News I Can Live With
Scan day was quickly approaching. My scanxiety was getting pretty intense. The last three drugs I had tried over the last year hadn't worked. My cancer just continued to grow. I really wasn't sure if I could deal with more bad news and another failed drug. There are only so many drugs, and I was flying through them way too quickly.
I started the chemotherapy, Navelbine, with Herceptin in September with high hopes that maybe this would be the one. This would be the treatment plan that would at least stabilize this ridiculous cancer. The scans were at 8:00 am and the hospital had a new CT Scanner. I was glad the imaging would be improved...for those of you familiar with CT scans, the new would be 128 slice scanning rather than 64. I went back to work to keep myself busy for one of the longest days of my life. The reports were not ready until 3:00 pm! When I picked my reports up, I wanted to run to the car, but I tried not to look too crazy and anxious. I have read many reports so I knew exactly what words I was looking for...decreased and/or stable. As I quickly scanned through the report, I sat there in my car just repeating myself over and over...thank you, thank you, thank you. The reports showed that everything was decreased in size or stable....everything! Nothing new. Nothing increased. For the first time in 12 long months, I had the report I had been so desperate to see. I couldn't wait to tell my husband and kids! The next day, my Oncologist showed me the new scans versus the latest ones. While the changes were not huge, they were changes in the right direction. This is what we needed!
I know I am blessed to live over three years with Stage 4 Cancer, and I keep looking forward to what I hope will be many more...thank you, thank you, thank you...This is News I Can Live With!
Is the Lining Always Silver?
The silver lining...oh "look for the silver lining" so many say. What does the silver lining even mean? The Urban Dictionary says..."a phrase used to tell someone that there is a brighter side to the problem they are facing. The phrase comes from the fact that, every dark rain cloud has a silver edge, or lining." Can the lining of Metastatic Breast Cancer really be silver?
Three years ago, when I was first diagnosed with MBC, I was certain that nothing good was going to come of this. I had found many blessings in disguise when diagnosed with early-stage breast cancer, but this was different...very different. While I am a glass is half-full kind of girl, my first unpleasant thoughts left me drowning, wondering is there a silver lining to this? Sickness, pain and death? The lining look dingy brown.
As time moved forward, slowly, so did I. Thanks to Living Beyond Breast Cancer, eight months later, I found myself in the MBC advocacy world. Over the past three years, I have been to three MBC conferences and several other forums where I have met some of the most amazing women. Many of whom became dear friends.
Was this a silver lining? Yes! I love these women, and I have learned so much from them about strength, and perseverance. But then the silver lost some of it's luster because I started losing these friends...painfully one by one. But as I sit here and think about it, the women that have passed were such blessings in my life. And my friends with MBC who are still with me in this crazy journey? I have no idea what life would be like without them.
I can see their beautiful reflections in my silver lining.
MBC has brought a wealth of experiences for me. I have helped organize women's breast health events, participated in discussion panels, and had several speaking opportunities to share my story. I was once the young student who prayed I would not have to read out loud in class. I was the speech student who struggled to get a good grade because I was so nervous. Five years ago, if you asked me to speak in front of others, my stomach turned. To my surprise, MBC has given me a voice to share...a voice I didn't know that I had.
About two months ago, a friend in advocacy asked me to share my story with a group of 600+ people in Orlando. Whoa! What?!? And even though in my mind, I was asking myself, "Can I do this? My voice said, "Of course, I would love to!" And so I did! An empty stage, no podium, just me, my head mic and a teleprompter remote. For whatever reason, I did not feel nervous. I made people laugh, and I made people cry. Thirty minutes later, it was over, and I couldn't believe I did it. I am not sure what kind of impact I had on the 600+ people in the room, but it felt good. I was helping to educate, advocate, and raise awareness and empathy.
More beautiful reflections in my silver lining.
And so I leave you with this... "I still continue to look for and find silver linings every day. Silver linings do not negate catastrophic circumstances and the feelings of sadness or anger that can follow. What they do is provide is balance and perspective." ~Hollye Jacobs
Is the lining always silver? I think it is all about the perspective you take. Do you even look at the silver lining? Take a moment...think about your silver linings....remember your blessings!
A Look at One Day...Every Three Weeks
Many have asked me about what my days are like when I go to the doctor and get infusions every three weeks. Below is Wednesday, October 18, 2017, a day in pictures...
Click the picture to see the next.
Fears and Falls
3 YEARS AND 1 MONTH...7 DIFFERENT LINES OF TREATMENT...50 TREATMENTS
"Sorry, we need to start a new line treatment. It just isn't doing what we want it to do." Seriously!?! Three failed drugs in a row. Why me? Seven months of wishful thinking, willing these drugs to work, ending up with nothing but disappoint and a spreading cancer. How much fear and how many falls can a person take?
I used to be able to count the cancer lesions. Now I've lost count as it continues to gather around my sternum and slowly creeping into my lungs. So...where do we go from here? Well we have started my 8th line of treatment, Navelbine and Herceptin infusions. I just simply need this one to work.
People often ask me how I deal with all of the fears and falls. I cannot really explain it, but I believe that I get back up every time through the grace of God. I take time for myself and try to wrap my head around the disappointments..."processing" is what I call it. I take the quiet alone time that I need to process. As I work through it, I slowly start gaining back my strength and bravery...reminding myself that I have to keep moving forward and remembering that everyday is a gift full of blessings! I cannot waste it feeling sorry for myself.
Don't let yourself get so busy that you fail to see all the blessings around you. I love the little surprise blessings. When you think of someone and, then they call or you run into them somewhere. When it has been a hectic day and you get a card in the mail from someone wishing you well. When you get up a little late, and you end up catching the most beautiful sunrise.
So to answer the question...how much fear and how many falls can a person take? The answer is simple, but yet most difficult. Stand back up and find grace in the everyday. Sometimes, you do have look hard, but grace is always there.
Refresh
Experience for Cancer Advocates with
A Fresh Chapter
Refresh
As I waited for my flight to take off for San Francisco, I wasn't totally sure what to expect. I was so excited to be chosen to attend A Fresh Chapter's Refresh Experience for Cancer Advocates. However, I was feeling a little nervous about walking into a group of strangers. We were going to be spending the next five days and nights together sharing our cancer stories, as well as sharing the ups and downs of our experiences in cancer advocacy.
One of the first activities we did together was volunteering as a group at Glide, an organization that provides three nutritious meals a day to San Francisco's poor, homeless and hungry. I have had opportunities to help serve food to others, but nothing to this magnitude. We fed 459 individuals that afternoon. This experience removed me from my comfort zone and placed me into a world I had only really heard about. Too often, we get caught up in our own struggles, and forget the struggles of our neighbors. My job was bussing tables and keeping water pitchers full. I kept feeling like I should start a conversation with someone but found myself always at a loss for words except...Hello. Can I help you carry that for you? Have a good afternoon. But I figured out that it isn't necessarily what you say. I held a clear bag for an elderly woman as she put every last morsel of food on her plate into it. No words exchanged. But when she was finished filling the bag, she looked up and smiled at me. A smile that spoke a million words. I found that one act that shows you care can have an impact on someone and change the way you are perceived.
Hours later, Drumm Rhythmic Events provided our group with a facilitated drum circle. As I walked into the room, I felt a childlike excitement. You wouldn't believe what a great stress relief it is to beat on a drum! Our drum leader was spectacular at teaching us rhythm that we could do as a group. We actually sounded good. More importantly, we felt good. As I looked around the circle, everyone was smiling and laughing as they beat their drums. What an amazing way to make a room of strangers feel so connected as we beat to the same rhythm.
Days 2-4 we spent at the Ralston White Retreat Center in Mill Valley. This beautiful 14,000 square foot home was the perfect place for me to face questions like What do I need to let go of? What do I need to hold on to? What do I need to embrace and let come? Nestled among the Red Woods we shared personal stories of our own advocacy, cancer, loss, fears, hopes, goals for the future. I loved this tranquil setting where I could take time to reflect while walking or sitting on the veranda or laying on the lawn. It in these moments that I found such peace, realizing how badly I had needed this retreat. I was able to face some of my brokenness and think about ways to heal and ways to continue to grow from it. What I also found was a group of incredible individuals who really listened to one another showing no judgement...just unconditional love and caring.
The last leg of our trip was at Asolimar Conference Center in Pacific Grove. Although it was chilly and cloudy on the beach, this became the place where we let it all go for a while...laughing, sharing photos of loved ones, and sharing fun stories before our closing circle the next day. All I will say about our closing circle is that I was one of the most emotional things I have experienced...and one of the most beautiful. I wish I had a picture of me with each person because they each shared a special moment with me, but here a few that I did get at Asilomar.
So what did I walk away with? What I found in San Francisco were 13 amazing cancer advocates with incredible stories of strength and compassion...2 men, 11 women, and 2 fearless leaders to walk us through five days of relationship building, personal development, networking and collaboration, volunteer recruitment, and a much needed opportunity to reflect and recharge. A Fresh Chapter gave us an experience of a lifetime, a tribe of new friendships and confidents, new perspectives on our work in cancer advocacy as well as new perspectives on our lives. This experience was a blessing and a gift to my life, and I look forward to using the personal development and tools that I learned.
Thank you Terri and Janet for facilitating and loving us through this amazing opportunity!
A Fresh Chapter (AFC) is a non-profit offering U.S. and International volunteer travel experiences to cancer patients, survivors, and caregivers to help them heal the emotional scars of cancer while serving others - and in the process, reclaim their lives. To learn more about A Fresh Chapter, visit the links below. Terri Wingham created this organization in 2012 to provides a fresh forum for addressing the emotional and psychological aspects of cancer. AFC now offers programs in Costa Rica, India, Peru, South Africa, and the U.S. To learn more, visit https://afreshchapter.com/
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All Sickness Ain't Death
"All Sickness Ain't Death." (2017) Four words that came to me for the first time in nearly 28 years as I laid in the hospital bed wondering what was going on with my body. And while I felt so miserable, I began to get nervous as I laid there. Was I going to get better? But then all of of a sudden George and this phrase jumped in my head, and I reminded myself this was just a bump in the road. I was just ill for the moment.
"All Sickness Ain't Death." (1989) The four words my Intro to Social Work professor quietly wrote on the chalkboard while we took our first exam. After he wrote them, he never really explained them. He left them there on the board for our own brains to ponder.
What those four words meant to him had to be profoundly different than what they meant to us...a bunch of freshmen just happy to be at college and free from home. He knew this, of course. We were clueless of the oppression, segregation, and racism that this man had faced in his life. We were clueless that he was George Taliaferro...a man with three legendary firsts in football from a time period when the faces of football were much different than they are now. Besides being one of the first great African-American Big Ten players, in 1949, he also became the first African-American to be drafted and then play quarterback in the NFL. I later learned in my friendship with George, those four words profoundly impacted his life as he persevered and showed others to also make the most of their lives.
This wonderful man made such an influence had on my life. I learned more about who I was and who I wanted to be in that one semester class than I did in any other college class. George graciously taught us that all sickness ain't death...you can persevere!
So here I am years later. I have learned the hard way that our bodies can endure and fight sickness after sickness. As cancer patients, we test our bodies by pushing them to unknown limits just to stay alive. We are willing to take on the extreme fatigue, hair loss, diarrhea, nauseous, mouth sores, anxiety, slight pain, medium pain, severe pain...all in the hopes that this drug will work. Maybe this drug will be the one that kills some of the cancer or at least keeps us stable for a while.
Two weeks ago, I had sickness test me. I was starting the third cycle of Ibrance and Faslodex and had been feeling well for the most part. Suddenly, I started getting progressively fatigued. Next thing I knew, I found myself in the hospital dehydrated with a critically high calcium level and a critically low potassium level. Scans showed slight progression again which meant this treatment combo wasn't working either.
And so I start over again with a new treatment plan, hoping and praying that maybe this is the one that will make a difference.
The good news...
My brain MRI showed no cancer. I am still able to get around with minimal pain and do the things I want to do. I have so many loved ones to spend time with. My husband and kids bring me such joy everyday with their warped sense of humors. At times, it is hard to deal with all the emotions and let downs. However, through the brokenness, I can still see the good all around me. There is still lots of life for me to live. Next stop...San Francisco!
However it relates to your life right now and the struggles you are facing...
George will quietly write on the board...
All Sickness Ain't Death.
"All Sickness Ain't Death." (1989) The four words my Intro to Social Work professor quietly wrote on the chalkboard while we took our first exam. After he wrote them, he never really explained them. He left them there on the board for our own brains to ponder.
What those four words meant to him had to be profoundly different than what they meant to us...a bunch of freshmen just happy to be at college and free from home. He knew this, of course. We were clueless of the oppression, segregation, and racism that this man had faced in his life. We were clueless that he was George Taliaferro...a man with three legendary firsts in football from a time period when the faces of football were much different than they are now. Besides being one of the first great African-American Big Ten players, in 1949, he also became the first African-American to be drafted and then play quarterback in the NFL. I later learned in my friendship with George, those four words profoundly impacted his life as he persevered and showed others to also make the most of their lives.
This wonderful man made such an influence had on my life. I learned more about who I was and who I wanted to be in that one semester class than I did in any other college class. George graciously taught us that all sickness ain't death...you can persevere!
So here I am years later. I have learned the hard way that our bodies can endure and fight sickness after sickness. As cancer patients, we test our bodies by pushing them to unknown limits just to stay alive. We are willing to take on the extreme fatigue, hair loss, diarrhea, nauseous, mouth sores, anxiety, slight pain, medium pain, severe pain...all in the hopes that this drug will work. Maybe this drug will be the one that kills some of the cancer or at least keeps us stable for a while.
Two weeks ago, I had sickness test me. I was starting the third cycle of Ibrance and Faslodex and had been feeling well for the most part. Suddenly, I started getting progressively fatigued. Next thing I knew, I found myself in the hospital dehydrated with a critically high calcium level and a critically low potassium level. Scans showed slight progression again which meant this treatment combo wasn't working either.
And so I start over again with a new treatment plan, hoping and praying that maybe this is the one that will make a difference.
The good news...
My brain MRI showed no cancer. I am still able to get around with minimal pain and do the things I want to do. I have so many loved ones to spend time with. My husband and kids bring me such joy everyday with their warped sense of humors. At times, it is hard to deal with all the emotions and let downs. However, through the brokenness, I can still see the good all around me. There is still lots of life for me to live. Next stop...San Francisco!However it relates to your life right now and the struggles you are facing...
George will quietly write on the board...
All Sickness Ain't Death.
Enduring Uncertainty
Uncertainty causes anxiety as it attempts to make you feel powerless. Uncertainty steals your ability to control situations in your life that you so desire to control. While struggling to hold on to some small piece of control, you desperately search for a new path, a new way to survive, even it is only temporary. The horrifying uncertainty begins the second you hear those words..."You have Metastatic Breast Cancer."
I have been faced with the challenge of enduring uncertainty too many times over the past several years. Progression is found and the immense feelings of uncertainty hits again. You start a new treatment, and there is a small sense of relief...maybe this is the way. But then you don't know what the side effects will be like, or if your body will even be able to tolerate this new drug or multiple drugs. How long will this treatment work...maybe 6 months, 12 months, or maybe I will be a lucky one whose treatment will last for years. When you find your new way...and the drug is stabilizing or even eliminating some of the cancer, you are then given a moment to relax a little and let the uncertainty settle.
Since I found out that the last clinical trial I was on did not work at all, the uncertainty has been overwhelming. My biopsy was scheduled right away and the waiting began. In about a week, I learned that the cancer was still Estrogen+ and HER2+. But the uncertainty continued as I waited another 2 weeks for the Match Trial results. Unfortunately, I did not have any mutations that matched any of the trial drugs. Although I was hoping for a Match Trial drug, at least we now knew the way forward.
Last Wednesday, I started a new treatment plan consisting of two drugs...Ibrance and Faslodex. No infusions for a while. The Ibrance is a pill I take everyday for 21 days and then 7 days off. The Faslodex is injections that I receive every four weeks. Oh how I hope this is a treatment plan that will stabilize things and let me relax some for a while.
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| Two of my amazing MBC friends |
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| Our 3rd LBBC conference together |
We all face uncertainty in our lives. When you do, remember to "Embrace the Suck," as my son Levi would say. Help each other through. It's the people who help you through day by day that remind you that you can endure. So very thankful for my people.
Moving Forward...Always Dragging My Cancer Baggage Behind Me
As we stood next to each other in church, she looked over at me and said, "Mom, your hair." I leaned towards her and whispered, "What about it?"
With a smile, she whispered back, "You look like you did before you got cancer."
That was over 4 1/2 years ago when she was only 8 years old. I have lost my hair twice...once when diagnosed Stage 2 in 2012 and once when diagnosed Stage 4 in 2014. I fought tears as it broke my heart thinking about all that she has been through at such a young age. When you have Stage 4 cancer, the journey continues...whether you want it to or not...and you just keep dragging the cancer baggage behind you...trying to never let it get ahead of you. I was reminded in that moment that I am not only one in my family dragging the baggage. My husband and five children are too. And so my path changed again this week. I was on a phase 1 clinical trial for a new HER2+ targeted treatment. Unfortunately, after two treatments, my scans showed no improvement, only progression. This was a devastating blow because being a part of a clinical trial involves a lot extras...keeping track of side effects, trips to Indy for bloodwork, ECHOS, EKGs, etc. I had put a lot of time and hope into this drug that failed me.
While this was quite a blow, we always need to remember to look for the blessings in disguise. Technically, the drug should have worked because it targets HER2, and that was what my cancer had always been, HER2+. Now we have found that something has changed and my oncologist is wasting no time to get to the bottom of it.
This coming Wednesday, I am going to have a new biopsy of the progressed area behind my sternum...not easy tissue to get to!! This will give us the HER2 status we are wondering about. In addition, I am now going to be a new patient in the IU Health Precision Genomics Program, and have cancer diagnostic genomic testing done of my new biopsy samples. What in the world is that, you ask. Genomic technology is new within the last several years, and is now cutting edge testing, allowing data from DNA to be sequenced. By doing this, my genetic doctors can look for mutations and changes within my cancer cells allowing the cancer to be precisely targeted with FDA approved drugs as well as many clinical trials. The doctors will also be able to better predict the effectiveness of future treatments for me, as well as possible toxicity reactions to those drugs.
The downside to this is that I am going to have to wait for the genetic sequencing to be done which could take up to six weeks...hopefully less!!!
As always...thanks to all of you who are here for me, you who follow me, and for all of you that keep me and my family in your prayers. Our hopes and prayers are that the biopsy goes well, they are able to get good samples, and that my cancer takes chill on growing while we wait for results and a new targeted treatment.
Have a Blessed Easter!
Believe Me, It Takes Great Patience to be a Patient
It was only my second infusion, in early September of 2012. I was sitting in the infusion center, IV in, and ready to go. We waited over an hour for the Herceptin to come down from the pharmacy. I was about to lose my mind. I felt like I had already been so through much waiting for the radiologist reports, the oncologist visits, the breast surgeon visits. I was so impatient in that moment, when Becky grabbed my arm and said, "You are going to have to learn to be patient, because this is the way it is in hospitals. Things don't always run smoothly." I take myself back to that conversation often, and am proud to say that I have taught myself to be a patient with a lot of patience.
Labs need time. The pharmacy needs to be accurate. Every patient's questions need to be answered. Emergencies happen. All of which create continuous delays throughout the day within the hospital.
It may seem unreasonable and that your time is not important. It may not seem fair. But, we all want quality care. Dictionary.com defines it too well...to be patient...bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like. Believe me, it takes a great deal of patience to be a patient.
So I am again reminded of this as I have had to be very patient over the past few weeks. On February 13, it was time for new CT Scans. I decided to get them a week early as my pain had increased leading me to believe that after only five good months, the Doxil was no longer working. Sure enough, I was right. I had minor progression. Time to change treatments yet again.
This time, my oncologist had a trial in mind for me. In looking at my options, I agreed with her that this seemed like a good direction to take. It is a phase 1 clinical trial. The pro being that it was a HER2 targeted treatment which I desperately need. The scary part being, this is a Phase 1 Trial, which is testing safe dosage levels for humans...or as my friend Susan hates for me to joke about, the next level higher than the lab mouse.
It started with a full day at the hospital a week and a half ago. A urine sample to make sure I wasn't pregnant...now that's funny, followed by 11 tubes of blood. Then I was off to another part of the hospital for an ECHO. While waiting for an hour for my name to be called, found out I had to go to another area of the hospital for the CT Scans. Finally ending with an EKG. Suddenly, it was 2:00 and I hadn't had a thing to eat and only a cup of water. But after it was all said and done, I found out the next day that I qualified for the trial!
I started the drug last Wednesday. Arriving at the hospital at 8:00 am, I started out with another blood draw. They moved me into a room in the clinical research hall of the hospital where Ben and I hung out waiting for the blood tests to be completed and the pharmacy to send my treatment. The first drip of the infusion started at 10:46. Over the next 90 minutes, it continued to drip...meanwhile they watched over me making sure I wasn't going to have an adverse reactions...vitals every 15 minutes. Two more blood draws at 2 hours later and 4 hours later. It was a long day!
I will receive these infusions every three weeks. Luckily, the days will not be as long as the first. Now we hope for the best!
I am a fidgety person who has trouble sitting still. I never dreamed that I would ever be patient enough to deal with this craziness cancer has brought to my life. But we do what we have to do. And I often have to remind myself...it takes a great deal of patience to be a patient.
Thank you for all you love, support, and prayers!
Please pray that this treatment will work...for a very long time!
Labs need time. The pharmacy needs to be accurate. Every patient's questions need to be answered. Emergencies happen. All of which create continuous delays throughout the day within the hospital.
It may seem unreasonable and that your time is not important. It may not seem fair. But, we all want quality care. Dictionary.com defines it too well...to be patient...bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like. Believe me, it takes a great deal of patience to be a patient.
So I am again reminded of this as I have had to be very patient over the past few weeks. On February 13, it was time for new CT Scans. I decided to get them a week early as my pain had increased leading me to believe that after only five good months, the Doxil was no longer working. Sure enough, I was right. I had minor progression. Time to change treatments yet again.
This time, my oncologist had a trial in mind for me. In looking at my options, I agreed with her that this seemed like a good direction to take. It is a phase 1 clinical trial. The pro being that it was a HER2 targeted treatment which I desperately need. The scary part being, this is a Phase 1 Trial, which is testing safe dosage levels for humans...or as my friend Susan hates for me to joke about, the next level higher than the lab mouse.
It started with a full day at the hospital a week and a half ago. A urine sample to make sure I wasn't pregnant...now that's funny, followed by 11 tubes of blood. Then I was off to another part of the hospital for an ECHO. While waiting for an hour for my name to be called, found out I had to go to another area of the hospital for the CT Scans. Finally ending with an EKG. Suddenly, it was 2:00 and I hadn't had a thing to eat and only a cup of water. But after it was all said and done, I found out the next day that I qualified for the trial!
I started the drug last Wednesday. Arriving at the hospital at 8:00 am, I started out with another blood draw. They moved me into a room in the clinical research hall of the hospital where Ben and I hung out waiting for the blood tests to be completed and the pharmacy to send my treatment. The first drip of the infusion started at 10:46. Over the next 90 minutes, it continued to drip...meanwhile they watched over me making sure I wasn't going to have an adverse reactions...vitals every 15 minutes. Two more blood draws at 2 hours later and 4 hours later. It was a long day!
I will receive these infusions every three weeks. Luckily, the days will not be as long as the first. Now we hope for the best!
I am a fidgety person who has trouble sitting still. I never dreamed that I would ever be patient enough to deal with this craziness cancer has brought to my life. But we do what we have to do. And I often have to remind myself...it takes a great deal of patience to be a patient.
Thank you for all you love, support, and prayers!
Please pray that this treatment will work...for a very long time!
The Mystery of Strength
It was 30 months ago that I was diagnosed with Stage 4 Metastatic Breast Cancer. 2 1/2 years. I cannot even begin to explain to you just how grateful to God that I am here, LIVING, and typing this post.
What is strength? What does it look like? What does it feel like? Can it be measured?
Well, everyone has it but some wonder if some have more of it than others? I think not.
Strength is something that everyone has. Strength displays itself in many different ways. Ways that can neither be understood nor explained. Really, it's a mystery. I suppose we store it somewhere within our souls...until we need it. I don't think that anyone necessarily has more than anyone else. I think it is a large spectrum. Some only need to find it every so often, while others must use it to survive.
Until I was diagnosed with breast cancer in 2012, I led what I would call, an easy life. I flowed through the motions of life and things always seemed to work out like it should for me. I always had a weird feeling within me that things were just too perfect. Why was I so lucky to walk along this life full of good fortune and blessings? Why did so many around me have so many struggles?
That day 30 months ago, that beautiful summer day in 2014, that day the glass shattered around me, that day my second oldest son turned 15 years old, that day my doctor held my hands and explained my new future which included treatments and scans the rest of my life...however long that may be. I was terrified, confused and broken. I couldn't envision what this new life was going to look like. I had to reach deep just to find the strength to breathe, the strength to look forward, the strength to carry on.
Last week was my 40th infusion treatment since that day. 40 one hour trips to the cancer center, 40 appointments with my oncologist, 40 needle pokes, 40 two+ tube blood draws, 40 infusions, throw in some Xgeva shots, Lupron shots, steroids, Benedryl, and then 40 one hour trips back home. I have had to find great strength to bring me through this.
But as I look forward, I know that it is going to continue to take me to new levels of strength that I cannot even let myself consider. Strength moving forward makes the strength that it took to get this far seem minimal. But I know it is in there...somewhere inside me. And I know I will find it. I know this because of my dear friends who are further along in this journey than me. It is the beauty and grace of their strength that gives me faith in my own.
And then there is the strength I see in my children. Many will tell you, I am not much of a crier. But I cannot think or talk aloud about the strength of my children as they walk through their lives with me without tears. Unlike me, they have had to reach deep within to find their strength early in life. They are amazing human beings who can use their strength to give me more.
We are all struggling with something. So when you feel defeated, broken and scared, when your exhaustion tries to break your spirit, remember...YOU have strength. Whatever it is, it sucks..but YOU are strong. And if you cannot find the strength you need, let those around you help you find it. It's there.
It's there.
What is strength? What does it look like? What does it feel like? Can it be measured?
Well, everyone has it but some wonder if some have more of it than others? I think not.
Strength is something that everyone has. Strength displays itself in many different ways. Ways that can neither be understood nor explained. Really, it's a mystery. I suppose we store it somewhere within our souls...until we need it. I don't think that anyone necessarily has more than anyone else. I think it is a large spectrum. Some only need to find it every so often, while others must use it to survive.
Until I was diagnosed with breast cancer in 2012, I led what I would call, an easy life. I flowed through the motions of life and things always seemed to work out like it should for me. I always had a weird feeling within me that things were just too perfect. Why was I so lucky to walk along this life full of good fortune and blessings? Why did so many around me have so many struggles?
That day 30 months ago, that beautiful summer day in 2014, that day the glass shattered around me, that day my second oldest son turned 15 years old, that day my doctor held my hands and explained my new future which included treatments and scans the rest of my life...however long that may be. I was terrified, confused and broken. I couldn't envision what this new life was going to look like. I had to reach deep just to find the strength to breathe, the strength to look forward, the strength to carry on.
Last week was my 40th infusion treatment since that day. 40 one hour trips to the cancer center, 40 appointments with my oncologist, 40 needle pokes, 40 two+ tube blood draws, 40 infusions, throw in some Xgeva shots, Lupron shots, steroids, Benedryl, and then 40 one hour trips back home. I have had to find great strength to bring me through this.
But as I look forward, I know that it is going to continue to take me to new levels of strength that I cannot even let myself consider. Strength moving forward makes the strength that it took to get this far seem minimal. But I know it is in there...somewhere inside me. And I know I will find it. I know this because of my dear friends who are further along in this journey than me. It is the beauty and grace of their strength that gives me faith in my own.
And then there is the strength I see in my children. Many will tell you, I am not much of a crier. But I cannot think or talk aloud about the strength of my children as they walk through their lives with me without tears. Unlike me, they have had to reach deep within to find their strength early in life. They are amazing human beings who can use their strength to give me more.
We are all struggling with something. So when you feel defeated, broken and scared, when your exhaustion tries to break your spirit, remember...YOU have strength. Whatever it is, it sucks..but YOU are strong. And if you cannot find the strength you need, let those around you help you find it. It's there.
It's there.
Stable is Good
Wow...two months have flown by since I lasted posted. It's not that I do not have anything to update. I guess that I am just not really sure what the update is. Right now, I am in a scary place that no cancer patient really wants to be. It is a foggy place where I am running away from progression, enduring the brutality of side effects while searching for that next line of treatment that will clear the path for a while.
When my Kadcyla treatments stopped working in July, I switched to Xeloda which was a chemotherapy pill that I did along side Herceptin infusions. After two rounds, new scans showed that this line of treatment was not cutting it.
So now treatments #36, #37, #38 and #39 have been a chemotherapy called Doxil. It looks like Hawaiian Punch going into my veins! My understanding is that it damages the DNA of cancer cells that tells them how to divide. I have been okay with dealing with the somewhat manageable side-effects as my last scans showed that all of my cancer areas have remained stable! Stable is good!
Our family is looking forward to a fun winter break together!
When my Kadcyla treatments stopped working in July, I switched to Xeloda which was a chemotherapy pill that I did along side Herceptin infusions. After two rounds, new scans showed that this line of treatment was not cutting it.
Infusions are every four weeks instead of three which is also nice! I am not really sure how long someone can stay on Doxil as it can be damaging to the heart...but honestly most of these cancer drugs are. But no worries right now, my cousin who is a Cardiologist says my ticker is looking good. :) So for now Doxil it is!
Our family is looking forward to a fun winter break together!
Merry Christmas!
A Soccer Mom's Dream Come True
It was 2008, Luke was 10 and Levi was 9. One of my older nephews was on the high school soccer team. Luke and Levi loved playing soccer, and they loved being ball-boys for all of the home high school soccer games. On October 10, 2008, the high school boys won Sectionals. All four of my boys were ecstatic. I was overwhelmed with joy by watching the team's excitement as they held their trophy in the air, and could only hope for a day that my boys would be able to do the same.
As I took pictures of the my little ball-boys of the winning game, Luke held the trophy in the air and said..."Some day, I am going to hold my own Sectional trophy!"
Eight years later, Luke is a senior, Levi a junior and David a freshman. They had the school's best record of 11-2 heading into Sectionals. We weren't too worried about the first game as we had already beat this team in the regular season. Luke scored 6 goals, winning 8-2.
Sectional finals would be against the 6 year defending Sectional Champions on their home field, and a team that accounted for one of our 2 losses of the season. Everyone knew it would be a tough game.
The game went scoreless leading to two 7 minute overtimes. The overtimes went scoreless leading to a penalty shoot-out. Now I do not know if you have ever witnessed a soccer penalty shoot-out, but they are very intense! Five players from each team take turns kicking a penalty shot against the goalie in hopes that one team scores more out of five than the other.
Luke was last in the line of five. Both teams hit all five!
Now there would be a second penalty shoot-out with five different players from each team. Levi, David and my nephew Austin were three of the 2nd group of five. It came down to David, he was the last of our five to kick. If he made it, we won, if he missed, we would be tied again.
He calmly walked out, set the ball, and kicked it past the goalie into the net.
The fans exploded. The team all jumped in a pile on top of my little freshman.
It was every athlete's mother's dream to watch my three boys hugging and celebrating. My dream had come true and so had theirs.
I consider it a sweet gift of a special moment from God. A moment I was here to see, and a moment they will never forget. See Video below!
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| Luke |
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| Levi |
Eight years later, Luke is a senior, Levi a junior and David a freshman. They had the school's best record of 11-2 heading into Sectionals. We weren't too worried about the first game as we had already beat this team in the regular season. Luke scored 6 goals, winning 8-2.
Sectional finals would be against the 6 year defending Sectional Champions on their home field, and a team that accounted for one of our 2 losses of the season. Everyone knew it would be a tough game.
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| Shirtless David after his winning goal |
Luke was last in the line of five. Both teams hit all five!
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| #13 Levi |
He calmly walked out, set the ball, and kicked it past the goalie into the net.
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| #9 Luke |
It was every athlete's mother's dream to watch my three boys hugging and celebrating. My dream had come true and so had theirs.
I consider it a sweet gift of a special moment from God. A moment I was here to see, and a moment they will never forget. See Video below!
Bravery in the Moments of Brokenness
What is Bravery? Dictionary.com says that bravery is an admirable quality of being able to confront frightening things. I think everyone has the capacity to be brave. You are really only confined by the walls that you put up around yourself. Those who may not feel like they are brave, probably have amazing bravery within that maybe they just haven't had to face yet.
I have many people say to me, I don't know how you do it. You are tougher and braver than I am, or could ever be. Well that is just silly...I really don't think I am tougher or braver than you or anyone else. I just have to be.
As you know, this year has been rough. I had a new breast cancer tumor removed in April. In July, I started having new pain in my sternum which led to changing my treatment plan. I was unable to get in the clinical trial I wanted. Meanwhile, two new cancer spots on my ribs began to grow. So I started Xeloda, a chemo in pill form along with Herceptin treatments.
I thought a lot about bravery yesterday. Again, everything changed within a day leaving me with a line of new things to think about, worry about and be brave about. Last week, I had a bone scan and CT scan to see how the treatment plan was working. After reading the reports, I had a strong feeling that I was going to have to pull out the bravery! Yesterday, I learned that the Xeloda has failed to work, so now I am going to start my fourth line treatment which is a stronger chemotherapy. I will be getting these infusions once every four weeks...starting yesterday!
There is an indescribable fear that takes over me when I start new treatments. You have no idea what your body's immediate reaction is going to be. And then you have no idea which of the many side effects on a three page list will be your new companions in life. It took a huge amount of bravery to sit down in that chair as they hung my toxic coded bag of red fluid.
They had given me a small bag of steroids before the chemo to help with any reactions. About 1/3 of the way through the bag of chemo, I felt like there was something in the back of my throat. As it seemed worse, I decided I should probably tell them. They moved forward by shooting me up with some more steroids and Benadryl. As a new sense of I'm dizzy, no I'm awake, now I'm hungry, oh I'm drowsy, no I'm jittery...the weirdness in my throat went away and the pumping of chemo resumed.
At the end of this day consumed by brokenness, I left feeling quite brave. The facts of my disease and my future are extremely unsettling, yet there is no other way to live. Living with a terminal illness is a continuous process of dealing with what happens in your body next, working with your oncologist in choosing the best plan, balancing optimism with reality, capturing the beautiful moments of your life, and ultimately choosing to live each day doing what matters to you the most.
Have hope and have faith!
Think about your day today and realize that you too are very BRAVE!
I have many people say to me, I don't know how you do it. You are tougher and braver than I am, or could ever be. Well that is just silly...I really don't think I am tougher or braver than you or anyone else. I just have to be.
As you know, this year has been rough. I had a new breast cancer tumor removed in April. In July, I started having new pain in my sternum which led to changing my treatment plan. I was unable to get in the clinical trial I wanted. Meanwhile, two new cancer spots on my ribs began to grow. So I started Xeloda, a chemo in pill form along with Herceptin treatments.
I thought a lot about bravery yesterday. Again, everything changed within a day leaving me with a line of new things to think about, worry about and be brave about. Last week, I had a bone scan and CT scan to see how the treatment plan was working. After reading the reports, I had a strong feeling that I was going to have to pull out the bravery! Yesterday, I learned that the Xeloda has failed to work, so now I am going to start my fourth line treatment which is a stronger chemotherapy. I will be getting these infusions once every four weeks...starting yesterday!
There is an indescribable fear that takes over me when I start new treatments. You have no idea what your body's immediate reaction is going to be. And then you have no idea which of the many side effects on a three page list will be your new companions in life. It took a huge amount of bravery to sit down in that chair as they hung my toxic coded bag of red fluid.
They had given me a small bag of steroids before the chemo to help with any reactions. About 1/3 of the way through the bag of chemo, I felt like there was something in the back of my throat. As it seemed worse, I decided I should probably tell them. They moved forward by shooting me up with some more steroids and Benadryl. As a new sense of I'm dizzy, no I'm awake, now I'm hungry, oh I'm drowsy, no I'm jittery...the weirdness in my throat went away and the pumping of chemo resumed. At the end of this day consumed by brokenness, I left feeling quite brave. The facts of my disease and my future are extremely unsettling, yet there is no other way to live. Living with a terminal illness is a continuous process of dealing with what happens in your body next, working with your oncologist in choosing the best plan, balancing optimism with reality, capturing the beautiful moments of your life, and ultimately choosing to live each day doing what matters to you the most.
Have hope and have faith!
Think about your day today and realize that you too are very BRAVE!
Moving Forward with my Third Line of Treatment
The treatment plan consists of two drugs. I will be getting a Herceptin infusion every three weeks. Then I will also be taking Xeloda, these lovely pills in the picture. I will be taking four after breakfast and four after supper...14 days on, then 7 days off...continuing this for as long as it works. We will have a scan in about five weeks to make sure it is doing its job!
While doing all the necessary scans in applying for the clinical trial, we found two more progressing spots on my ribs. I had a feeling there were new spots because of the new pain that I had been experiencing.
It has been a very stressful and worrisome few weeks. So please say a prayer for me that this new line of treatment is going to work!
On a bright note...I was invited to be on an advisory panel about living with stage IV breast cancer and clinical trials. Last week, they flew me to La Jolla, California for a few days. Although we had a full day of meetings, I did get a little time to explore La Jolla, including an up close and personal visit with some seals. 
Definitely a little break from the craziness that I was needing.
Finding Grace in the Midst of the Next Storm
Sometimes the fog begins to fade, the strings holding the stress slowly loosen.
The medicine is working, and the body has adjusted the best it can to the side effects.
Some kind of new normal has gradually settled in, but then suddenly in one long day, you find yourself broken again, trying to find grace in the midst of the next storm.
Cancer has no boundaries. Cancer takes no consideration of your feelings. Cancer takes on your strength as it opponent.
Cancer has challenged me for four years now.
It has challenged my body with treatments and surgeries that have left me to continue to rebuild a body that is broken.
It has challenged my emotions, taking me to dark places of brokenness that only God and the love of my husband, kids, family and friends can pull me out of.
It has challenged my feelings as I have learned of the new cancer diagnoses of two friends and mourned the loss of two of my Stage IV sisters and a friend's granddaughter in less than two months.
And now cancer again finds its recurrence in me. My cancer has spread more into my sternum leaving me to deal with new pain and with a new treatment plan...leaving me to feel like a broken branch dangling from an old tree in a violent storm.
As the wind was swirling around me in my new brokenness, my oncologist grabs my hand, grounding me with an opportunity to do a phase 3 clinical trial...a chance for me to help with the research that we so desperately need to find a cure.
So for now, the storm has begun to settle around me as I prepare to begin a new treatment regimen. The next few weeks will be full of testing...CT scans, a PET scan, an MRI, an ECHO, and blood tests...and then on to my new treatment. I will share more as I know it.
In the meantime...I am so thankful for all of your prayers for me and my family. My husband and children walk this path with me through the colorful sunrises and sunsets...through the beautiful days that we hope will never end...as well as through the storms the teach us that life is precious and to find grace in everything.
Make everyday special, make a new friendship, rekindle an old one, learn something new, do something that scares you.
Live and love life!
The medicine is working, and the body has adjusted the best it can to the side effects.
Some kind of new normal has gradually settled in, but then suddenly in one long day, you find yourself broken again, trying to find grace in the midst of the next storm.
Cancer has no boundaries. Cancer takes no consideration of your feelings. Cancer takes on your strength as it opponent.
Cancer has challenged me for four years now.
It has challenged my body with treatments and surgeries that have left me to continue to rebuild a body that is broken.
It has challenged my emotions, taking me to dark places of brokenness that only God and the love of my husband, kids, family and friends can pull me out of.
It has challenged my feelings as I have learned of the new cancer diagnoses of two friends and mourned the loss of two of my Stage IV sisters and a friend's granddaughter in less than two months.
And now cancer again finds its recurrence in me. My cancer has spread more into my sternum leaving me to deal with new pain and with a new treatment plan...leaving me to feel like a broken branch dangling from an old tree in a violent storm.
As the wind was swirling around me in my new brokenness, my oncologist grabs my hand, grounding me with an opportunity to do a phase 3 clinical trial...a chance for me to help with the research that we so desperately need to find a cure.
So for now, the storm has begun to settle around me as I prepare to begin a new treatment regimen. The next few weeks will be full of testing...CT scans, a PET scan, an MRI, an ECHO, and blood tests...and then on to my new treatment. I will share more as I know it.
In the meantime...I am so thankful for all of your prayers for me and my family. My husband and children walk this path with me through the colorful sunrises and sunsets...through the beautiful days that we hope will never end...as well as through the storms the teach us that life is precious and to find grace in everything.
Make everyday special, make a new friendship, rekindle an old one, learn something new, do something that scares you.
Live and love life!