I'm done with chemo. The oncologist and I spoke before my last treatment and due to my somewhat extreme and adverse side effects he reduced my dose by 50% total last week. He said if the side effects were the same, though he was convinced I wouldn't feel them at all this time, then I would just be done. The side effects were the same and I even had a side effect that had disappeared return. I am done with chemo.
It has been a bit anti-climatic I must admit. There is a sense that something is still hanging over my head. The plan at this point is to continue with Herceptin (a Her2 blocker drug) once every three weeks for the next year. This will be done through IV at The Block Center. I want to go there so I can also receive my IV Vitamin C. The problem with this plan, however, is the condition of my heart. I had an echo done before my last treatment and found that my ejection fraction was diminished by 20%. Ejection fraction is the measurement of how much blood the left ventricle of the heart is pumping with each contraction. A normal ejection fraction is somewhere between 55 and 70. Mine is 40. I looked that up on the American Heart Association website: http://www.heart.org
It says, and I quote, "An ejection fraction between 40 and 55 indicates damage, perhaps from a previous heart attack, but it may not indicate heart failure." May not indicate heart failure. Oh good.
The decrease in my heart function is attributed to the Herceptin. I was not given Herceptin at my last treatment due to the results of this echo. The doctors I spoke with seemed confident that withholding this dose will allow my heart to bounce back and they expect to see an improvement in my ejection fraction next week when I have the echo repeated.
Of course I am concerned for my heart, which has already taken on a lot of hard-hitting drugs in it's day. I had a lifetime dose of a chemotherapy drug called Adriamyacin in 1991-92 which is also known to damage heart function and was found to indeed have damaged mine.
Going forward I still have some very weighty decisions to make. I am concerned about the health and function of my heart. I also want to be sure I am doing what is necessary to deal with the cancer that is Her2 positive and the only reason I would be taking Herceptin in the first place.
I went to a gentle yoga class on Wednesday morning. I've been wanting to go and since the boys are with their Mimi and Papa I took advantage of the opportunity. It was a quiet, soft, slow-paced class. Perfect for my needs. Throughout our time together we practiced ujayi (a form of deep breathing, in and out of the nose). I teach deep breathing to my clients and use a different style, breathing in through the nose and exhaling through the mouth. I found ujayi to be very challenging. I kept wanting to open my mouth, especially since with the exhale we were instructed to make a soft noise that only we could hear. With each exhale I was working to keep my mouth shut and also to coordinate making a noise at the same time. Well, the noise in my ears sounded like panting or choking or at the very least something very uncomfortable. I was struggling. Then the instructor said, "The only rule is not to struggle. No struggling here. Just do what you are able."
I felt freed, released to not breath right, if that's what I was doing. With the next exhale the sound in my head was no longer a choke but instead like a gentle whisper or soft breeze. My pauses in between each breath were not forced or held tightly, they were simple and gentle pauses. This deep breathing practice that I've taught for years took on new life and meaning for me in that moment.
Since then I have reflected on the transition and recognized that once I let go of struggling, once I set myself free from the expectations of doing it "right" I easily entered into a relaxed state where that style of breathing seemed natural to me. This led me to wonder more about the concept of struggle and to consider what else I might keep myself from.
I listened to an interview with Mary O'Malley, author of the book "What's in the Way IS the Way". I haven't read the book yet but I enjoyed the interview and her gentle perspective on life. She talked about the fact that there will always be struggle. Life is like the yin/yang, a dance of light and dark. But if we incorporate and include all of our experiences in life and stop trying to "rid" ourselves of what is uncomfortable or undesirable then we move toward healing.
Graham Cooke, a Vineyard pastor from the UK, has a two-part YouTube series called "The Art of Thinking Brilliantly" https://youtu.be/sYlpHy3Pvl0 in which he also addresses adversity, trial and struggle in life. He poses these questions: What if every trial we face is meant to advance us, to grow us? What if struggle is meant to bring us closer to and make us more aware of the goodness of God?
As I considered all that I had been experiencing and posed these questions to myself I came to this conclusion. To me there is another side to struggle that has nothing to do with discomfort or pain. To me the other side of struggle IS the goodness of God, the light in the dark, wisdom gained in the midst of chaos or adversity. So while I face more difficult decisions I rest in the fact that I am not confronting a foe but instead I am approaching the Throne of Grace and ultimate Goodness. I am not entering a battle but am dancing in the light. I can rest in the fact that no matter the circumstance I will grow here.
Friday, June 26, 2015
Thursday, June 25, 2015
Thoughts on Being
Before being diagnosed with cancer (the second time) I found that my life was very overwhelming. Being the wife/mom in a family of 6 holds a lot of demands on time and energy. Beyond that I also realized that I was putting a lot of demands on myself. I had very high, often unrealistic expectations of myself to "do it all" and to always be "better". One can only keep a perfectionistic pace for so long before the mind, body, spirit or all of the above begin to whisper messages to "slow it down" or "take care of me". If you don't listen to the whispers then there will be consequences.
Somewhere along the way I did hear the whispers but wasn't sure about how to heed them. In June of last year I started working with an amazing nutritionist in my area, Kelli Bonomo. I knew that for the sake of my blood sugar levels (I was diagnosed with diabetes in 2001 and had never worked with a nutritionist) and my body's wellbeing that this was a very important step. Working with Kelli for over 6 months really helped me to learn to balance what was on my plate, to learn to fuel my body effectively and to care for it with food.
Through conversations with Kelli and in personal quiet time that I was learning to carve out for myself, I began to realize and contemplate other areas of my life that required attention such as the pressure I was putting on myself and what that was doing to my emotional and spiritual self. During this time of reflection I realized how caught up I was with "doing" and rarely let myself simply "be". It was at that point I began to allow myself to be, letting go of the expectations for doing.
The following is the result of this personal discovery:
Somewhere along the way I did hear the whispers but wasn't sure about how to heed them. In June of last year I started working with an amazing nutritionist in my area, Kelli Bonomo. I knew that for the sake of my blood sugar levels (I was diagnosed with diabetes in 2001 and had never worked with a nutritionist) and my body's wellbeing that this was a very important step. Working with Kelli for over 6 months really helped me to learn to balance what was on my plate, to learn to fuel my body effectively and to care for it with food.
Through conversations with Kelli and in personal quiet time that I was learning to carve out for myself, I began to realize and contemplate other areas of my life that required attention such as the pressure I was putting on myself and what that was doing to my emotional and spiritual self. During this time of reflection I realized how caught up I was with "doing" and rarely let myself simply "be". It was at that point I began to allow myself to be, letting go of the expectations for doing.
The following is the result of this personal discovery:
BE
Grateful
What am I thankful for?
Active
What is my favorite form of movement?
Creative
How do I express myself most positively?
Well-Fed
What are my favorite healthy foods?
Positive
What are my strengths?
Spiritual
How do I pray, meditate, relax?
Restful
How is my quiet time and sleep?
Supportive
Gifts are for giving.
I asked myself these questions over the course of time to consider where I was at with each area of my life. In acknowledging my state of being I was able to allow what was true of me and my person to come forward. I didn't have to strive or struggle to change, be better or do more, I simply had to BE; to be genuine and true to who I already was. I also realized that while there are external demands that others would put upon me coupled with those I put upon myself, but the truth of that matter was giving is an organic part of being as well. We are each gifted in unique ways. So I realized if I allowed myself to be who I was designed to be then giving of myself (in the ways that only I can) is simply a natural expression of my being.
This paradigm shift was an amazing part of my growth in the last year. I revisit it now in the midst of a situation that could be a war/struggle/fight if I chose to approach it that way. But as I've said before, I choose to float not fight with this cancer. I choose to BE.
Wednesday, June 10, 2015
Something as Simple as Food
I have been struggling lately. It's not a new issue but it has gotten worse as treatments have worn on. I can't eat. Or, I can eat but I have to force myself for the most part. Food tastes horrible. The chemotherapy has messed up my taste buds and taints the flavor of almost any food I try to eat and I try many different things in hope of finding something that will agree with me.
Those closest to me know what a mental challenge this is. It actually causes mental anguish, I would say, at times. Most everything sounds good, looks good and smells good. The other day I was craving pizza so much. I had thought about it all day. My husband suggested that we order a pizza so I could just give it a try. When the pizza arrived I smelled it, looked at it then just put my hands on the box and sobbed.
"I just want it to taste right," I cried, "I just want it to be good."
It wasn't good. But I was able to eat about 5 bites before my gag reflex kicked in to remind me that I wasn't in total control.
I really think that was a turning point for me. A point when I realized or decided that this just wasn't right. How can it be a good thing for a person to be unable to help themselves in the most basic way, by eating. It has been some time since I've had a fully nourishing meal. Drinking protein shakes which include my supplements only takes me so far. My stomach feels hungry most of the time and I am unable to feed it.
Yesterday showed some improvement. Today was even better. I know each day will be better than the last. In the meantime I've been losing weight. With so little fat and so little nourishment I wonder how much of my supplements are even being absorbed in my system.
I just finished listening to the book Radical Remission on audiobook and loved it. I would recommend it to anyone and everyone for the sake of their health, wellbeing, and balance. It was such an encouraging piece of work for me to read/hear during such a difficult time. The book provides testimonies of many different cancer survivors and their healing journeys. Some went through traditional cancer treatment, others found healing by other means. The author, Dr. Kelly Turner, outlines the 9 things each cancer survivor that she interviewed or who shared their story on her website www.radicalremission.com, had in common. They include: Radically Changing Your Diet, Taking Control of Your Health, Following Your Intuition, Using Herbs and Supplements, Releasing Suppressed Emotions, Increasing Positive Emotions, Embracing Social Supports, Deepening Spiritual Connection, Having Strong Reasons for Living.
Before chemo started in March I had already radically changed my diet. I was eating a mostly vegan diet with the occasional exception. I had seen the benefits of this in my energy level and moderate weight loss. It felt good to know I was doing something healthy for my body. Since being on chemo I have been unable to follow that diet due to the taste buds and gag reflex. What little I can eat has been off plan. At this point, however, the goal is simply to eat.
Another step I had already taken toward health and balance was the use of supplements. The Block Center increased the number of supplements I take when I began treatment. That has been a difficult thing for me to maintain as well due to the gag reflex. As many of my supplements as possible were changed to capsules so I could pour the powder out of the capsule into my protein shake as it has been very difficult for me to take pills lately.
I believe we all have to continue work for emotionally wellness. The decision to release suppressed emotions and increase the positive is a daily one.
My social support network has been AMAZING from the first day. I'm often overwhelmed by the love and kindness of the people at my church, those I work with, friends, family and even strangers. I am not adverse to speaking up when I need something. I know there is a blessing in giving as well as receiving and I feel truly blessed. I tell people I feel carried by the prayers of those who are faithfully praying for me. It's tangible and I'm amazed by it. I know my social support system is an important part of my healing.
I have always had a deep faith. I can see how each step of this life leads me to learn more and more. Every situation builds on my faith and my relationship with God. It's this connection that fuels me.
Having Strong Reasons for Living...their names are Bobby, Teddy, Sam, William and Pete. My loves and my life.
Taking Control of Your Health and Following Your Intuition were very important chapters for me. I said earlier that crying over that box of pizza was a turning point for me. In that moment I realized how desperate I had become and how out of control I truly feel. Those two important chapters provided such a level of encouragement for me in the midst of deep frustration and sadness. They empowered me by reminding me that I have a voice and the inner sense (intuition) as to how best to care for myself.
Starting with lack of food and ending with page 290 of Radical Remission, I have been on quite a journey of desperation and self-discovery that I will be sharing more about in future posts. For now I will say that I feel I am healing from the inside out. I was reminded tonight in 2 Corinthians 5:17 "Therefore if anyone is in Christ the new creation has come, the old has gone..." Every issue in my life is in Christ because I am. This is good news, as I certainly cannot handle this latest challenge on my own! So I will continue to seek Him in the midst of this situation. I will ask for His wisdom and guidance in this healing process and choose to believe that very soon I will be able to enjoy even something as simple as food.
Those closest to me know what a mental challenge this is. It actually causes mental anguish, I would say, at times. Most everything sounds good, looks good and smells good. The other day I was craving pizza so much. I had thought about it all day. My husband suggested that we order a pizza so I could just give it a try. When the pizza arrived I smelled it, looked at it then just put my hands on the box and sobbed.
"I just want it to taste right," I cried, "I just want it to be good."
It wasn't good. But I was able to eat about 5 bites before my gag reflex kicked in to remind me that I wasn't in total control.
I really think that was a turning point for me. A point when I realized or decided that this just wasn't right. How can it be a good thing for a person to be unable to help themselves in the most basic way, by eating. It has been some time since I've had a fully nourishing meal. Drinking protein shakes which include my supplements only takes me so far. My stomach feels hungry most of the time and I am unable to feed it.
Yesterday showed some improvement. Today was even better. I know each day will be better than the last. In the meantime I've been losing weight. With so little fat and so little nourishment I wonder how much of my supplements are even being absorbed in my system.
I just finished listening to the book Radical Remission on audiobook and loved it. I would recommend it to anyone and everyone for the sake of their health, wellbeing, and balance. It was such an encouraging piece of work for me to read/hear during such a difficult time. The book provides testimonies of many different cancer survivors and their healing journeys. Some went through traditional cancer treatment, others found healing by other means. The author, Dr. Kelly Turner, outlines the 9 things each cancer survivor that she interviewed or who shared their story on her website www.radicalremission.com, had in common. They include: Radically Changing Your Diet, Taking Control of Your Health, Following Your Intuition, Using Herbs and Supplements, Releasing Suppressed Emotions, Increasing Positive Emotions, Embracing Social Supports, Deepening Spiritual Connection, Having Strong Reasons for Living.
Before chemo started in March I had already radically changed my diet. I was eating a mostly vegan diet with the occasional exception. I had seen the benefits of this in my energy level and moderate weight loss. It felt good to know I was doing something healthy for my body. Since being on chemo I have been unable to follow that diet due to the taste buds and gag reflex. What little I can eat has been off plan. At this point, however, the goal is simply to eat.
Another step I had already taken toward health and balance was the use of supplements. The Block Center increased the number of supplements I take when I began treatment. That has been a difficult thing for me to maintain as well due to the gag reflex. As many of my supplements as possible were changed to capsules so I could pour the powder out of the capsule into my protein shake as it has been very difficult for me to take pills lately.
I believe we all have to continue work for emotionally wellness. The decision to release suppressed emotions and increase the positive is a daily one.
My social support network has been AMAZING from the first day. I'm often overwhelmed by the love and kindness of the people at my church, those I work with, friends, family and even strangers. I am not adverse to speaking up when I need something. I know there is a blessing in giving as well as receiving and I feel truly blessed. I tell people I feel carried by the prayers of those who are faithfully praying for me. It's tangible and I'm amazed by it. I know my social support system is an important part of my healing.
I have always had a deep faith. I can see how each step of this life leads me to learn more and more. Every situation builds on my faith and my relationship with God. It's this connection that fuels me.
Having Strong Reasons for Living...their names are Bobby, Teddy, Sam, William and Pete. My loves and my life.
Taking Control of Your Health and Following Your Intuition were very important chapters for me. I said earlier that crying over that box of pizza was a turning point for me. In that moment I realized how desperate I had become and how out of control I truly feel. Those two important chapters provided such a level of encouragement for me in the midst of deep frustration and sadness. They empowered me by reminding me that I have a voice and the inner sense (intuition) as to how best to care for myself.
Starting with lack of food and ending with page 290 of Radical Remission, I have been on quite a journey of desperation and self-discovery that I will be sharing more about in future posts. For now I will say that I feel I am healing from the inside out. I was reminded tonight in 2 Corinthians 5:17 "Therefore if anyone is in Christ the new creation has come, the old has gone..." Every issue in my life is in Christ because I am. This is good news, as I certainly cannot handle this latest challenge on my own! So I will continue to seek Him in the midst of this situation. I will ask for His wisdom and guidance in this healing process and choose to believe that very soon I will be able to enjoy even something as simple as food.
Wednesday, June 3, 2015
All About the Boys
I've had a lot of questions lately about the boys. How are the boys doing? How are they handling this cancer treatment-craziness? The truth is: they're amazing. They ARE AMAZING. Each one has his way of caring for his mom and showing his love for me daily.
Bobby, the oldest at 5 years old, seeks to help in whatever way he can and beams with pride when his efforts are acknowledged. Before my diagnosis I felt he was entering a stage where he was gravitating more toward his dad and guy time but lately he has stayed close to mom and loves to snuggle more than usual. He asks what would make me feel better and I know he'd go to the ends of the earth to get it for me. I often respond, "Your hugs." Or simply, "you do!"
Teddy, second oldest son and eldest of the 4 year old twins by a minute, brings me flowers from the yard, stickers and fruit. He asks me when I'll be done with my medicine. I explain that my medicine will be done in July but then I will have to have surgery in August. Ted tries to surround his mom with beautiful things and is so pleased when I display his offerings. The other day he took me by the hand to lead me (with my eyes closed per instructions) to this plant that had bloomed in our flower bed. He was sharing a beautiful surprise with me and asked that I take a picture.
Bobby, the oldest at 5 years old, seeks to help in whatever way he can and beams with pride when his efforts are acknowledged. Before my diagnosis I felt he was entering a stage where he was gravitating more toward his dad and guy time but lately he has stayed close to mom and loves to snuggle more than usual. He asks what would make me feel better and I know he'd go to the ends of the earth to get it for me. I often respond, "Your hugs." Or simply, "you do!"
Teddy, second oldest son and eldest of the 4 year old twins by a minute, brings me flowers from the yard, stickers and fruit. He asks me when I'll be done with my medicine. I explain that my medicine will be done in July but then I will have to have surgery in August. Ted tries to surround his mom with beautiful things and is so pleased when I display his offerings. The other day he took me by the hand to lead me (with my eyes closed per instructions) to this plant that had bloomed in our flower bed. He was sharing a beautiful surprise with me and asked that I take a picture.
Sam, our second 4 year old and 3rd son, also offers gifts such as stickers off of his morning banana (every morning he brings it to me, without fail). But his favorite thing to do is to connect with me in regards to our similarities. He reminds me often that we share a favorite color (orange) and like the same foods (when I am actually able to eat). Whatever the case may be he makes sure to point out where he and I meet and always ends with a hug and a smile. He asks me often when I'm going to feel better. I simply respond, "Soon, buddy. I hope very soon."
William is "the baby" and while he is 21months old he is still my baby. Will, or Mr. Mister as we all call him, seems to be holding on to everyone more. He will go down the line to find out where everyone is at all times, this includes Cindy, Mimi, Papa and even Molly (our dog) and Maddy (Cindy's dog). This may be natural for his age but it seems noteworthy. With my "disappearance" for a few days every 3 weeks and the break in structure that creates, I believe he's trying to keep everything and everyone in place in that mind of his. It's always fun when we reunite to have him run into my arms shouting joyfully, "MOMMY!"
These boys are beautiful, rambunctious, silly and smart. They continue to learn, grow and change at lightening speed. And as I strive to keep up in the midst of work, chores and treatment maybe the more appropriate question is: How am I handling them in the midst of this cancer treatment craziness? For their sakes this is an important question.
I'm exhausted and I feel taxed and spent most days from the word go. I often end the day disappointed with myself at my impatience or the way I dealt with things. I strategize how I can avoid those same pitfalls tomorrow. Sometimes it works. Other times not. But I believe the biggest lesson I've learned is to let go and love. If that's all I do during the day then it was a great day. I'll let go of those things that would typically weigh me down (the "to do's"); let go of the way I think my boys should behave (ie. quiet, calm, etc). And I will love every moment. I will love the way they jump around and wrestle one another. I'll love the way their lips quiver when they are put in time out for hitting. I will love the relentless questions and requests at bedtime. I will love the sweaty, sleepy head on my shoulder.
I will have grace for them and for myself. They are gracious with me. I try to be humble and honest with them. I know when I blow it and am sure to apologize to them for "throwing a fit" (indeed that is often the case). I try to limit expectations or plans for the day. The goal is to spend time with my boys and be present in it. If there is a chore that is in dire need of completion I will involve all of the boys in the project. They love to help.
I will savor every hug, back rub, hand pat, kiss, flower, sticker, smile and look from these boys because I know in them they are loving me. At the end of the day it is this exchange of love in word and deed that matters.
I could go on and on about my boys. How are they, you ask? They are amazing. Very loving and caring toward their mama. I am beyond blessed by them.
My posse :)
Picture courtesy of Cindy Heimberger 2015
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