Hi Everyone! 

I'm so sorry for the delay in writing a post. I posted an update after my last scan via video on my Facebook but I know not everyone uses that platform. I had radiation for a tumor in my back muscle in September and I was hoping that I would be out of pain. The radiation went smoothly although I was so exhausted most days and had to rest a lot. I had a scan in early September and it seemed to confirm that things were stable. I spent September resting a lot and enjoying just taking care of myself and the kids. After the t-cell transplant, traveling and radiation, I was just spent. Taylor and I cooked a lot and I enjoyed the simplicity of a daily routine. 

I had a scan this week and on the day of the scan, the doctor pulled up the images and gave me a thumbs-up that things continue to look stable. I was starting to get used to some good news! I came home after the scan and told the kids the news. The following day, Dr. Agulnik from the City of Hope called and he had news that was very different from the day before. Unfortunately, oncologists don't read scans well and in August he misread the scan and got me nervous and scared, this time he said everything was stable. Both times he was wrong. Every time I get news of cancer growth, I feel like I've been punched in the gut. I don't want to use the word "bad" news versus "good news" because that very morning when I woke up it dawned on me that there are no bad or good experiences, we just have experiences. We tend to label things and when we do, we discount the beauty in all experiences. I may not like hearing that cancer is growing and I have a bunch of emotions that follow that news, but all emotions are amazing and so what if I cry for a day? It is real and acknowledges my pain and on the flip side, when I come out of expressing that pain, I feel such hope and inspiration flowing through me. It's like weathering a storm on the ocean and enjoying the fact that not only did you survive, you have renewed hope and appreciation for when things are calm.  Enjoy the calm when you have it in your life because a storm is always coming. That's life. We were not born with a promise that life would be stress-free and challenge-free. The Bible is full of advice about how to weather the storms (faith), and all religions talk about challenges in life. The news was that several tumors have grown and one mystery tumor doubled in size. The mystery tumor is why I'm still in pain in my right shoulder. It turns out that the radiologist missed noting that I had a second tumor in my back on the official report on every scan including this week's scan. This mystery tumor is only a few inches above the one they radiated last month. Apparently, it was 1.2 cm two months ago, and now it's 2.4cm. I'm really confused honestly how a radiologist missed noting that tumor on the last three scans, and how two oncologists and the radiologist performing the radiation also missed seeing it. At least Dr. Agulnik found it when he was looking at my scan. The pain has been annoying and frustrating, especially in my shoulder. Had they seen that tumor, I could have had radiation on it along with the other tumor and I would have been out of pain. These are the frustrating moments in the cancer journey. Even the experts miss things. You can imagine my surprise when the doctor told me about the mystery tumor but at least now I can head back in soon and start radiation on that tumor.  I'm also going to find out if they can radiate one of the lung tumors that also doubled in size. I also have two tumors near my heart that grew slightly but they are in a risky spot to radiate. Of course, I'm bummed to find out that numerous nodules/tumors grew. Some grew slightly and a few almost doubled in size. Now it's time for radiation and a new study. I have a second opinion scheduled with Dr. Singh this Wednesday and I'm reaching out to the radiation Doctor tomorrow to get an appointment. Dr. Agulnik at the City of Hope is meeting with the tumor board to see if he can get me a spot in a study that is closed and to see if I qualify for another study they have. It sure was nice to have calm in my life for several months but the winds have picked up and it's time to head back into braving the high seas. I want it to be known that I am not fighting cancer, I'm fighting to live. If and when my body says enough, I trust that God was a part of me living and surviving just as God will be the one who says it's time to come home. I told my kids that I do not want it said after I pass away that I "lost the fight" because I did not lose. First, it's not lost on me that I am already a walking, living miracle. I have lived valiantly for 5.4 years with cancer and I had it for two years prior to my diagnosis. I have lived with over 50 nodules in my lungs for over 4 years and I have not seen one person in my Synovial Sarcoma group that has had that many tumors. I have watched many cancer warriors pass away in a lot less time with only a few tumors. I don't know why God has kept me going but I'm grateful for every moment I have here. I do everything to help God by taking great care of myself and valuing every moment I have. I never take anything for granted. Second, I won't lose when I leave this earth because my soul will live on. I will visit my loved ones from beyond, probably as a butterfly since I love how butterflies represent transformation! I'm not going anywhere soon though, since I still have a lot of life left in me and I think God has work for me to do. 

Much love and gratitude! Blessings.....

Denise 

Living Well

People would define living well very differently. In our American society, living well often equates to eating well. Eating well however does not mean eating healthy, in fact just the opposite. I don't think I realized how dysfunctional our society is with its relationship to food until I went vegan over a year ago. I had given up meat a decade earlier but still ate fish and diary until I gave that up as well. I have noticed that people will cling to their unhealthy diets no matter how much the food is making them sick, people will make excuses about their dietary choices and people think being vegan is a preference versus a lifestyle. So many times, friends or family have tried to get my kids and I to just eat meat occasionally because why not. I never had so many people care about what I ate until I went vegan. Somehow, going plant based seems to trigger people who are feeling a bit guilty about their culinary choices and misery loves company. 

Let me start with the fact that I have never felt better with my dietary choices. Turns out, being vegan fits with me perfectly. I love the variety of foods I eat as a vegan, enjoy finding new vegan restaurants when we travel, and I love how I feel physically being plant based. I never have a heavy feeling or heartburn and I eat lots of fiber. Of course, the plant based diet helped me even more because I am immunocompromised. My cancer treatments have been pretty taxing but if you look at me, other than a bald head, you'd be shocked I have a cancer diagnosis. I look healthy and I bounce back from treatments more easily. I remember when I was first diagnosed with cancer, when I was in shock and not quite ready to give up the fish and dairy, plus it didn't help that everyone wanted me to eat meat more than ever back then because of misinformation that I could use the protein. I get plenty of protein on a plant based diet but back then, I did not know enough to help me navigate the plant based terrain. 

My daughter and I cook together now, comb through vegan cookbooks and love going on field trips to vegan restaurants to see what their take on a vegan burger is and to enjoy new environments. There are also some yummy fast-food plant based places where we can still get delicious yet healthier versions of mac-n-cheese, pancakes, onion rings, etc. We splurge on that occasionally. I know changing dietary choices is a big change so I've come up with some suggestions to get motivated to increase plant-based foods into your diet and to start changing bad habits into healthier ones. The good news is, each change brings more awareness and empowerment that you are what you eat, literally. 

Let's get started:

1. Change out your margarine and butter for plant based versions. Trust me, butter and plant based butter taste the same, so this is a no brainer. I bake with plant based butter, saute, and use it just like I would regular butter. We like the Oatmilk butter, cashew butter and Earth Balance margarine but we like most of the options. 

2. It's also easy to swap out dairy milk for an alternative. There are now so many alternatives, you can find the one that tastes the best to you. I love most alternative milks but my favorite is oat milk because its texture is most like dairy milk and it tastes great in recipes. I use oat milk in coffee and for all recipes that call for milk. By the way, cashew milk ice cream is amazing. We love So Delicious Salted Caramel chocolate dipped bars. 

3. Eggs seem to be called for in most recipes but I've learned that nothing actually needs an egg. Every recipe we've found has an egg replacement alternative. I use "Just Egg" which is an egg replacement for cookie recipes and to make great scrambles. I also have a great French toast recipe I created using "Just Egg." I usually use one and a half tablespoon of Just Egg as a replacement for an egg in a recipe. You can also look up creative ways to replace eggs but Just Egg works well for me. You can also purchase folded Just Egg in the freezer section which makes great egg-n-vegan cheese breakfast sandwiches. I'll include that recipe at the end of this post as well. 

4. Eat 100% plant based once a week to start. Call it Vegan Monday or Plant Based Tuesday, or Meatless Wednesday, but try giving up all animal products one day a week. This is a great way to help you try recipes or foods that are new and shows you how easy it is to focus on plants instead of meat. 

5. Get a physical and get your baseline bloodwork done so that as time goes on you can compare. This also might motivate you if your weight is too high or if you are borderline with health issues. Denial is easy to ignore until you have facts that show you on a report that your cholesterol is too high. People seem to ignore the scale too easily. 

6. Watch inspiring documentary's on healthy eating to inform and motivate you. Some of my favorites: Kiss The Ground, Game Changers, What the Health, Seaspiracy, and Forks Over Knives." Read books like, "How Not To Die," and "How Not To Diet," by Dr. Gregor. Join Facebook plant based groups or watch Tik Tok videos about the benefits of a plant based diet. Find vegan restaurants in your area and try them out. It's easier eating vegan when there are no meat or dairy options on a menu taunting you to go back to your old habits. Besides, you'll find out how yummy plant based food can be. 

7. Give it time. Your taste buds are use to over processed, fatty, high calorie, animal products....vegan foods will taste different at first but once you've been eating plant based long enough, your taste buds change. I thought plant based cheeses tasted just okay at first but now I love them. Be patient and commit yourself to taking more control of your nutritional health. It's easier to eat vegan these days and every day more restaurants are offering plant based options so now is a great time to increase your plant based options in your diet. 

Recipes: By Denise and Taylor Burke 

Peanut Butter Cookies

½ cup of  raw (organic, unrefined, or raw) brown sugar

¼ cup raw (organic, unrefined, or raw) sugar

1 stick plant-based butter (½ cup) 

½ teaspoon vanilla extract

1 ½ tablespoon Just Egg 

1 cup coarse (stone-ground) whole wheat flour (adjust as needed)

½ teaspoon baking soda

Pinch of salt

½ cup of peanut butter 

¼ cup vegan dark chocolate chips (optional) 

**Another variation, add ½ cup Oats to the flour mixture. 

*Preheat oven to 350 degrees. Mix butter and sugars together until creamy. Add Just Egg and vanilla extract and mix well. Add the peanut butter and mix. Stir in flour, baking soda, and salt and mix until all flour is absorbed into the mixture. Bake one cookie for 7 min on a cookie sheet with parchment paper or an ungreased cookie sheet. Baking one cookie is a great way to make sure there is enough flour in the batter. Every oven and altitude can affect how much flour is needed. Add more flour if the cookie comes out too flat. Bake cookies for 7 minutes and when you take the cookie sheet out, allow them to sit out for 2-3 minutes on the cookie sheet before putting them on wax paper or a cooling rack. This allows them to cook a bit longer yet remain soft.

Chocolate Chip Cookies

 ½ cup of  raw (organic, unrefined, or raw) brown sugar

¼ cup raw (organic, unrefined, or raw) sugar

1 stick plant-based butter (½ cup) 

½ teaspoon vanilla extract

1 ½ tablespoon Just Egg 

1 1/2 cup whole wheat flour (adjust as needed)

½ teaspoon baking soda

Pinch of salt

¼ cup vegan dark chocolate chips 

*Preheat oven to 350 degrees. Mix butter and sugars together until creamy. Add Just Egg and vanilla extract and mix well. Stir in flour, baking soda, and salt and mix until all flour is absorbed into the mixture. Add chocolate chips once the flour mixture is stirred in completely. Bake one cookie for 7 min on a cookie sheet with parchment paper or an ungreased cookie sheet. Baking one cookie is a great way to make sure there is enough flour in the batter. Every oven and altitude can affect how much flour is needed. Add more flour if the cookie comes out too flat. Bake cookies for 7 minutes and when you take the cookie sheet out, allow them to sit out for 2-3 minutes on the cookie sheet before putting them on wax paper or a cooling rack. This allows them to cook a bit longer yet remain soft. 

Oatmeal Raisin Cookies

 ½ cup of  raw (organic, unrefined, or raw) brown sugar

¼ cup raw (organic, unrefined, or raw) sugar

1 stick plant-based butter (½ cup) 

½ teaspoon vanilla extract

1 ½ tablespoon Just Egg 

         1 cup oats

1 cup whole wheat flour (adjust as needed)

½ teaspoon baking soda

Pinch of salt

¼ cup raisins 

*Preheat oven to 350 degrees. Mix butter and sugars together until creamy. Add Just Egg and vanilla extract and mix well. Stir in flour, baking soda, and salt and mix until all flour is absorbed into the mixture. Add chocolate chips once the flour mixture is stirred in completely. Bake one cookie for 7 min on a cookie sheet with parchment paper or an ungreased cookie sheet. Baking one cookie is a great way to make sure there is enough flour in the batter. Every oven and altitude can affect how much flour is needed. Add more flour if the cookie comes out too flat. Bake cookies for 7 minutes and when you take the cookie sheet out, allow them to sit out for 2-3 minutes on the cookie sheet before putting them on wax paper or a cooling rack. This allows them to cook a bit longer yet remain soft. 

            French Toast

Loaf of vegan Challah bread or any vegan bread

1 container "Just Egg"

½ Cup Califa Farms Oat Creamer Cinnamon Roll 

¼ teaspoon maple extract or maple syrup 

½ - 1 teaspoon vanilla extract

1 teaspoon ground cinnamon

3 tablespoons of vegan butter 

Slice the bread and set it aside. Mix ingredients except for the butter. Use the butter to grease the frying pan. On medium heat, dip the bread pieces in the batter and cook evenly on both sides. Serve with vegan butter and maple syrup.

Sausage, Just Egg-n-cheese Breakfast Sandwich

two slices of sourdough bread (or any vegan bread you like) 

1 Ozo brand sausage patty (or your preferred brand)

1 frozen folded Just Egg 

1 piece of So Delicious brand American cheese

1 tablespoon Follow Your Heart brand Garlic Aoili Veganaise 

India Black Kala Namak salt 

*Follow Your Heart Brand American cheese work well too

In a frying pan, spray the pan with olive oil and cook the sausage patty, and folded Just Egg on medium heat. Cook for 2 ½ minutes on each side. Put the American cheese on the egg once it has cooked for 5 minutes total until melted. (Sprinkle the India black salt on the just egg when you place it in the bread) Toast the two pieces of sourdough. Put the garlic aioli on the bread along with the Just Egg,

Evolve

 I have been observing a lot of changes going on all around me. The world is shifting, people are waking up or doubling down to protect or cling to their dysfunction. Change is in the air and for some, this has been a much-needed shift, like a breath of fresh air. Many others are in fear, overwhelmed, scared and angry because they have issues in themselves they have not faced. The ones in fear often blame or participate in the divisiveness in our country. The upside is people often freak out before they let go and allow themselves to grow in healthy ways. Some will go down fighting, like clinging to the Titanic as it goes down rather than getting into the life raft. It's all about choice. We create our lives by how we perceive things. I've really seen this clearly over the past year. There are folks that have resources, they live comfortably, they want for nothing and yet they participate in anger and hatred referring to politics and act as if our country is fractured. People are fractured, our country is going to adjust and rebalance but it's people that need to heal and grow. We need to be the change we seek in this world and it starts with us. Yelling at the tv, blaming one party or the other, and hating each other is old energy and keeps people stuck in fear and in the past. It's time for us to shake off the old paradigms and embrace stepping into a new universe. If each one of us chose each day to emulate and be a role model of the behaviors we want to see in others and in our politicians and leaders, then we literally are shifting the world around us. We can change our world since each of us affects all of those we touch both in our personal lives and whomever we interact with in any capacity. Yes, we instigate change both when we are kind and when we are feisty. Speaking up is healthy when it's done in a respectful way to promote communication and awareness. However, most people want to be heard and they just aren't listening. You have to be able to tune in to those around us to promote growth versus dictating, yelling, berating, and judging others. Observe where you are at, don't judge it. Are you happy, adjusted, and grateful? Are you angry, anxious, agitated, or edgy? Do you cycle between some or all of those? Just observe, then you can start to look at what is underlying how you are feeling and start to say the affirmation, "I choose to be the highest and best version of myself every day." This prayer or affirmation helps jog the psyche into releasing and becoming more aware of those old, outdated beliefs that are holding you back from being the best version of yourself. You might find a lot of emotion, sadness, anger, and fears bubble out. Observe and move through it. I'm shocked at what comes out of me when I'm detoxing old stuff, but heck, it's mine to release and it's a lot more work to live with buried pain than it is to feel it and detox it. Like any detox, it's a painful process at times but it's also liberating and opens you up to incredible emotional and personal growth. Look at your life, the quality of your relationships, your overall perspective of life (are you in gratitude, or do you complain every day) and realize that you are the change the world needs. Each one of us has incredible power to affect this world positively as well as negatively. Before you throw stones at all of those people letting you down, take a hard and honest look at yourself and how others might perceive your behavior. Introspection helps us become more understanding about other people's shortcomings since once you look honestly at your own blind spots, we tend to be more understanding about other people's pain. Make no mistake, people act in ways that reflect their pain and their joy. Some emanate more pain and anger, others act sweet yet are passive-aggressive and do not know themselves while others bring pure happiness wherever they go. We are all a work in progress, so wherever you are in your growth cycle is okay, just allow yourself to evolve and to shift into the highest and best version of yourself. Namaste.

Thanksgiving Bliss

 Expectations lead to misery, while hope allows for possibilities. I have realized that I use to lead my life with too many expectations. I would plan Thanksgiving with a list of expectations that I didn't even fully realize I had. I look back to the many Thanksgiving where I was miserable because I either felt like I had dropped the ball, like when my kids were young and I was working and I didn't get to the store to buy things to cook, and my now ex-husband did not get to the store either. Of course, the difference was he could care less about what we ate on Thanksgiving as long as he wasn't cooking it, so he was free from pressure while I felt like a bad wife and mother. That Thanksgiving we went out to eat at a local burger joint and the kids were thrilled. Yet, I harshly judged myself as having not met some sort of expectation I had running in the background. Fast forward to many holidays when I did get all of the food, invited family, and yet it still felt stressful and as if it didn't meet an expectation. What was the expectation? Perfection? family getting along? Norman Rockwell version of a holiday? I don't know but this year, I realized that I have evolved past expectations and it's darn freeing. This Thanksgiving, thanks to the pandemic, we kept it simple and devoid of expectations. I ordered a pre-cooked meal from Sprouts, bought a few things to make from scratch, bought pies at Marie Calendars (I expected those to be delicious, lol), and the kids and I approached the holiday from a new perspective. My daughter and I enjoyed making latte's and playing backgammon on Thanksgiving morning, we walked, I took a hot bath, the boys slept in and played X-Box, and my daughter played the piano (her happy place). We warmed up the meal as it got dark, we sat down together with the fire blazing in the fireplace behind us and we were happy. That's when it struck me, that all of the years that I had run around trying to please everyone, attempting to fit into a version of Thanksgiving I had created had put a lot of pressure on myself and my family. I wasn't living in the moment. This Thanksgiving, I was in the flow....absolutely being in the moment, enjoying what each moment offered. I wasn't stressed, we all did things we wanted and then came together for a meal dressed casually, just being ourselves. No pressure, no expectations, no pleasing others, just a simple and enjoyable day. At the end of the day, while sitting in the front of the fire reading, I finally understood what bliss feels like. It wasn't a state of trying to feel something, it was just being in the flow, appreciating each moment and allowing each moment to be what it is without judgement or pressure to be something else. Now, I will approach Christmas with the same hope...to allow it to unfold naturally. I will purchase a pre-cooked meal again, buy delicious pies the day before and make the few dishes I enjoy cooking, and I look forward to a day in which we all get what we want, a relaxing day without me projecting a list of "should be's." If the lock-down and pandemic can teach us anything, it's that we all needed to slow down and take stock about what is truly important. 

The Wild West of Cancer Treatments

       I am about to start a new research study this week. It is the wild west of treatment options and I have no idea what to expect. I'm more hopeful than nervous, yet some nervousness is to be expected. I'm embarking on a path that doctors do not know what to expect. The company that designed the drug is surely hoping that the drug will do what they designed it to do without causing too much harm to the patient. We are all hoping for miracles through science. Unlike chemotherapy, where we all know what to expect generally, like throwing a  nuclear bomb at cancer, it also throws toxins at every organ, cell, and muscle in the body, causing too many side effects to list. Of course, along with the hopes that chemo will halt or kill cancer in its tracks, it also decimates the immune system, sometimes causing long term organ damage to the heart, lungs, and kidneys, as well as subtle side effects like lowered white blood counts for years and chemo brain (where we swear we have long term memory issues resulting from the chemo). Chemotherapy has its place, since it, along with surgery and radiation have been the main treatment protocols for cancer patients. The protocols and options have been expanding and now there is less harmful chemotherapy (some are maintenance chemotherapies), plus a whole host of immunotherapy and research studies working on a T-cell response. It's actually an exciting time in cancer research and I am lucky to have the options I have since 5 years ago, the options and study's we have today just did not exist. I cannot wait to be one of the pioneers in research. The researchers are hard at work trying to come up with better, less harmful ways to treat and hopefully cure cancer but their research is no good unless they have people willing to join the effort and be the test subjects. I look at it this way, I have stage 4 cancer that is considered incurable. I was in one research study for a year and a half, and at that time, the drug I was taking slowed the growth of my tumors. I had a chance to take a drug that is not yet FDA approved, and I was one of the subjects that it worked for. It didn't cure my cancer but it slowed it down further, seemed to prevent new tumors from forming and I gave lots of data in my daily journal to help them understand how this drug affected me. I have no doubt that the drug I was taking will be FDA approved in the near future. Now I head into a riskier study. This is a phase one study, while the last study I was in was a phase three study. This study will require infusions weekly at first and 2-3 days of tests and observations weekly. I say, bring it on! Nothing ventured, nothing gained. I can lose big or I can gain big. The biggest risk is severe side effects, which is always a risk with any study. The risks seem relatively low, however, compared to other treatments, but still, one never knows what to expect with a new treatment, especially one with little data on human subjects. I've researched the company that is leading this study and their science is exciting, to say the least. If they can prompt the immune system to do its job to kill cancer, with lower side effects than current protocols, people can be cured of cancer or at least live longer lives with fewer side effects. I can't wait to report to everyone how this treatment affects me and I am hopeful that the molecules they inject into me, do precisely what they have been designed to do. The most concerning side effects seem to be lowered blood pressure and an extreme immune system response that can be a crisis, which is why they will be observing me for over 24 hours for the first couple of infusions. Here I go....starting Tuesday Morning, I will get my first infusion as I arrive bright and early at the clinic at 6am. Wish me luck, send prayers and I'll keep you all posted! 

Joshua Tree

https://youtu.be/YG_UaewFQCg

Stay Focused

Link to Stay Focused

Happy 2020!

This is my third New Year’s as a cancer warrior. In 2017, I celebrated heading into 2018 on New Year’s, I had no hair and I knew that 2018 would bring the loss of a limb on January 9th. On New Year’s eve 2018, I had recently found out that the cancer had metastasized to my lungs and I knew that 2019 would be uncertain as I headed into a research study beginning in January 2019. Now, on this New Year’s Eve, I head into 2020 with some faith that the research study is buying me time and keeping my cancer stable. I don’t take anything for granted. I know that each year I live is truly a gift. I’ve watched some of my fellow cancer warriors lose their fight along the way and we’ve all lost some loved ones in 2019 to car accidents, heart attacks, and other unforeseen conditions. Life is unpredictable. I’m excited for 2020. I don’t have a pretend version of perfection for 2020. I’m all too aware that life is beautiful and messy all at the same time. Yesterday I was sobbing most of the day, and today.. the sun is shining and the sky’s are blue as I walk to Starbucks for my latte. Life is so simple really.. love, forgiveness, feelings, joy, tears, anger, hope, hugs and more forgiveness. We are all a work in progress and life is way too short to hold onto fear, grudges, and anger. Yes... express anger and then move on, apologize or ask for forgiveness and then live.. with all of your heart. We have no guarantees about how long we get to be here. I’m in awe every day... even through my tears, I’m in awe. In fact.. I’m in awe of my tears.. because my tears reflect the depth of my pain... they express what my words can barely touch. My tears are so pure and honest and they honor my feelings. I’m so happy that I’m at a point that I honor my tears as much as I honor my joy. I hope you all can laugh and cry with all of your heart in 2020 and that you find happiness in the simple things. I hope you can forgive those who have hurt you and find the courage to walk away from those who refuse to honor you. We can’t change others but we can send them love and move on. Forgiveness is freedom! It releases us from the bondage of victimhood and blame and opens us up to spread more joy and love. If I’ve ever hurt anyone who might be reading this.. I’m very sorry. Please forgive me. 🙏 Truly. We are all perfectly imperfect and that’s why life is just so amazing. 

On a side note... after I wrote this (in draft form) while enjoying my latte at Starbucks, I got up to head back out on my walk and a woman walked in front of me who hurt Taylor and myself years ago and it’s obvious she harbors anger as she ignored me and walked right by. My brain thought of a few choice words for her that were quietly in my thoughts and then I stopped and a calm presence reminded me to follow my own advice, so instead, I said in my thoughts, “I forgive her.” Then as I walked to the crosswalk and I had the right of way, a car cut me off, almost hitting me (not the same lady in Starbucks, lol). Another moment to say, “I forgive her.” In a matter of 5 minutes, I was reminded and shown that forgiveness is a daily and hourly process! 

My latest scan shows a slight growth of 1mm of the target tumor and slight growth of a couple of other small nodules but the doctor is happy and says my disease is “stable.” 

Happy New Year everyone!!! Here’s hoping that 2020 is filled with love, new beginnings, letting go of fears, profound connections, insight, lots of hugs and hope. If you need a hug....come and find me. I’ll give you a BIG hug! 

XOXO much love! 

Denise ❤️

Love Is...

Love is simple but emotions complicate things. I think if we just loved and made sure every day that we are impeccable with giving love and receiving love, we’d have fewer misunderstandings. But, we are all complicated human beings. We each come with our set of hurts, betrayals, wounds, perceptions, These are the things that couples ultimately fight about and why couples have misunderstandings. Here are some things that I’ve learned along the way that can help a couple navigate the murky waters of emotions:

1. Be careful with texts and e-mails. Without hearing the intonations of the other person's voice, texts/e-mails can be so easily misperceived. I’m often baffled and surprised when I hear someone’s interpretation of one of my texts. I knew what I meant... and assumed they did too. We all do that. But, the other person reads our words and hears something totally different. If you have a long-distance relationship, it’s imperative to make sure you both set aside time to speak or face time on the phone to keep the misunderstandings to a minimum.

2. If you are going through a time of separation for any reason (work, schedules, travel), write a love letter to each other and read it occasionally, especially when the distance is taking its toll. Because we all have our wounds and defenses, when there is a physical distance between a couple, insecurities and fears start to pop up. A letter is something tangible to help you remember the love the other has for you. The problem with texts is that they are fleeting and maybe your love texted something sweet a week ago... but that’s out of sight so many days later. Since relationships are like plants... they need watering, one week without loving texts starts to wither the vines, but a letter is the safety to read when you are feeling a bit detached. It’s your reminder that you are both invested in each other and the relationship to want to make sure the other knows their love for you, and they don’t doubt your love for them. A simple letter can help.

3. Relationships have three categories: that help create a loving connection. Couples spend time together, talk on the phone (or Face Time) and text/e-mail. The best way to create a stronger bond is to set aside some time for each other. Turn off phones (even for a little bit) and be present with one another. When life gets busy, of course, calls and Face Time are second best. Hearing each other’s voices tends to bring each person back into alignment with the energy between them. Calls are important to keep the connection strong. Texting/e-mails as stated earlier should be used cautiously. Of course, texts are a great way to flirt and to let each other know you are thinking about each other. Texts and e-mails are a great quick way to stay connected. The important thing is to check in with each other to see what each other needs. If you are each giving 100%, you’ll want to know what makes your partner feel good (daily calls, occasional calls, etc).

4. If the relationship is going through a tough patch, due to outside stressors or distance, I suggest keeping a journal. Brainstorm how you can express your emotions during a difficult time in a relationship.

5. Let yourself be loved. The biggest barrier to relationships is that people fear the one thing they want the most. Most don’t even realize the unconscious blocks they put up nor do they recognize the avoidance tactics they use to keep from being loved. This one takes time to understand your own defenses and insecurities. Even the most secure person can feel insecure when they are in love because being I love means being vulnerable. That’s the beauty of being in love... feeling like you are falling off a cliff over and over. It’s scary but oh so exciting all at the same time.

6. Love (and live) with abandon. If fears and insecurities pop up.. move through them, feel them, then love with abandon and repeat cycle over and over until “love with abandon” is the only thing left. Eventually, your fears and insecurities will melt away. Love is simple... but our emotions are not. Love can be peaceful and calm and yet love can make us feel like we are losing our minds. Love is worth leaping off the cliff... just buckle up though because love is a bumpy ride in self-awareness if you allow it to be. So much can be learned about oneself when you fall in love, so enjoy the ride.

All In

I have discovered a secret to life.. we have a choice to sit on the sidelines or be all in. I choose all in! We all have free will and many choose to live a mediocre life, playing it safe and living in their comfort zone. I was given a chance to look at life from a new perspective. Once I was diagnosed with cancer, I had a choice to either wallow in fear or to embrace my journey every step of the way. I chose to embrace it. I felt the ups and downs, I cried when I felt sad, vented when I was angry and I seized the opportunity to grow from what life had dealt me. Life dealt me an opportunity and I jumped in wholeheartedly. I’m not one to feel sorry for myself for too long anyway. What good does that serve? If I can be a beacon of light and hope for even one lost soul, then it was all worth it. I know that others may choose a different path and that is their choice. At the end of our days here, I don’t know one person who will say they wished they worked more, bought more stuff or watched more television. Most would like more time with loved ones, a chance to travel to those places they always put off and wished they took those days off to enjoy life. What if the love of your life crossed your path? Would you embrace the opportunity or flee in fear? Do you stay in a thankless job complaining, or leap into the unknown? We can’t get the time back. The choice is yours. Are you all in or are you going through the motions? Are you joy-filled or just getting by? I hope you find your way and eventually realize that “All In” is a choice for an evolved soul who knows that life is an adventure worth living fully with one’s heart and soul.

All We Have Is Now

Two years ago today, I was diagnosed with synovial sarcoma. In simpler terms, I was diagnosed with cancer. I remember the conversation with my podiatrist like it was yesterday. Like any trauma, some details are blurry and other details are vivid and unforgettable. I remember the doctor getting on the phone after I called his office to find out if I could swim with stitches. It was noteworthy because he was difficult to get a hold of generally. I remember him telling me that he had bad news and that the pathology report from tumor removed from my foot came back as a malignant tumor of a rare cancer. The type of cancer (he did tell me the name) was one of those fuzzy details I couldn't remember until he told me the name of the cancer several days after the call. I remember that it was a Friday night and we were excited to be in Lake Havasu visiting my folks and the kids were swimming in the pool when I made the call to my podiatrist. It felt like time stood still when I was on the phone with him and as if I was in an episode of the Twilight Zone. My world was spinning in a new direction and I knew that my life would never be the same. As he talked on and on, some bits of information past the initial malignant tumor dialogue managed to infiltrate but otherwise, I just wept in a semi dazed state. I wept for the loss of the reality I had known, I wept about my uncertain future, and I wept because I knew the path ahead of me would be the most challenging journey I've ever faced. I'm so glad I cried most of that weekend. I was right about what I'd be facing and I just needed to vent. 
That next Monday, I was a little more clear-headed and I brought support to the doctor's appointment with my podiatrist. The main question I had for him was...."why didn't you ever do a biopsy doctor?" His response was quick and with a bit of a chuckle, "Because nothing bad ever happens in the foot." Well, apparently he was wrong and cancer can happen anywhere, and I was sitting across from him schooling him in the bad things that can happen when you assume a massive tumor is nothing. I also knew that I'd likely have an amputation before my loved ones because that week, I started looking up cases of synovial sarcoma in the foot and most had amputations. From late June 2017 until my amputation in January 2018, I went through four rounds of chemo, had family and friends rally around me, felt blessed as meals were dropped at my doorstep, lost my hair, felt the sickest I've ever felt in my life from chemo, and took more prescription drugs in 6 months than I had in my previous 52 years combined. I was scared, overwhelmed, angry, and sad. I was also filled with love, gratitude, hope, faith, and every emotion imaginable. Sometimes I'd cycle through all of those emotions in a day. Once I got through chapter one in my cancer journey of diagnosis and chemotherapy, it was time for chapter two, the amputation. By the time I had my amputation, I felt a lot more grounded in my emotions and I knew I would have to focus on healing and getting around with a disability, so I couldn't focus too much on the cancer at that point. I conquered driving with my left foot and getting around my house with a walker and a scooter. A fall on the concrete slowed me up for a bit, but then I healed up and was fitted with my first prosthetic. I have invested a lot of hard work in learning to walk and function with a prosthetic. I adhered to attending regular physical therapy and walked daily. I think that this is why I can walk so well now with a prosthetic. 

I had one clean scan in March 2018 after my amputation, but I knew that I should hold off on an all-out celebration until I've had a few clean scans. I knew from my research, that people like me with an oops surgery (when the tumor is improperly removed) and with the tumor has been growing for 1 1/2 years or more, that often the cancer spreads to the lungs. In the summer of 2018, I found out that suspicious nodules were in my lungs and in November when I was evacuating from wildfires, I got a call from my doctor that confirmed that the nodules in my lungs were indeed synovial sarcoma. I cried when I found out, but I was able to regroup pretty quickly. After the initial cancer diagnosis which was pretty devastating, then an amputation which was life-altering, finding out that I had cancer in my lungs was scary but surprisingly not overwhelming. I mean after what I had been through, my tolerance level in dealing with bad news had grown considerably. In fact overall as a human being, I had grown stronger in ways I could have never imagined. 

Then I entered chapter three, a research study. I'm currently in chapter three, living with cancer. The research study is showing promise. The medicine I am taking has kept the nodules in lungs from growing. The only time they grew was when I took a month off from the meds due to toxicity from the dosage. I experienced a fall this past winter and it took a few months for me to get back to my new normal. What is my new normal and how have I grown in ways I could have never imagined? My new normal is I have cancer and I will always have cancer. I will never be cancer-free, but I can hopefully live a lot longer than previously imagined. The new drugs and research studies may make it possible for me to exceed what the previous research shows to be the expected life expectancy of a patient with my history. The targeted treatments is a game-changer and they just don't know how long people can expect to live on these treatment because the protocols haven't been around for very long. As I reflect on the last 2 years, It feels like I've lived a lifetime in these two short and yet long years. Time has flown, yet there were times that time dragged on when I was going through difficult moments. I am an amputee. Living with a disability has opened my eyes to a lot of things. I am aware of things that I use to take for granted. I have to step carefully and be aware of my surroundings. I can take the stairs but often opt for the elevator for safety reasons. My hips ache after a long day on my feet, since carrying the prosthetic takes a toll on the hips mostly. I am focusing on my kids and spending as much quality time with them as possible. I feel like I'm finally living the old adage, live life as if every day is your last. Recently, I saw a bumper sticker that said, 'All we have is now.' Words to live by. 

I started dating last summer and dated someone very nice for awhile, but decided that we weren't quite a match. He's still a friend and I'm so glad that I was able to see that I could date as an amputee and cancer warrior. If you know any single men in their 50's, who don't mind dating a woman with cancer, who also happens to be an amputee, send him my way and tell him he'd never wait in a line at Disneyland again. Oh, and I'm always assured a parking space right up front! On a serious note, I walked in the cancer support community center Hope Walk yesterday, which solidifies my new normal. I have met some unforgettable cancer warriors since being diagnosed with cancer. I told my kids that supporting the cancer community will now always be a part of my journey. Overall, life has settled down now and the dust has settled for the most part. My main focus is gaining more strength (from working out) and more flexibility with a new foot. I need to take care of my health since my white blood count is still low. I live scan to scan, plan fun things to do with my kids, and I can somewhat start to plan ahead. I say that, but it still crosses my mind when I think about planning things six months out, will I still be alive. I'm not being negative, it's just this strange cancer reality I find myself in. Maybe one day the drugs for my type of cancer will eliminate the nodules and I'll be able to say NED (no evidence of disease). Maybe these drugs will just keep things from growing and I can live many, many years like this. I can live with cancer as long as I can live. I'm here, I'm happy, I'm healthy overall except for the darn cancer, I'm an amputee, and I have a lot to live for! I may have been diagnosed with cancer two years ago, but I had cancer growing in my foot for two years or more before that, so technically, I've been living with cancer for at least 4 years. I'm here to tell you that I'm not going anywhere soon. God still needs me here and I've got living to do.....

Strong in The Broken Places

#cancer #sarcoma #amputee #synovial sarcoma #wellness

Let's Talk About Cancer

Meditation and The Art of Relaxation

My Cancer Journey

Second Opinion

Living is an Art

I was reflecting about my past 15 months. I've had many highs and many lows since being diagnosed with a very rare cancer called Synovial Sarcoma. Overall, it has been an amazing ride. I am so much closer to many friends and family. I feel as if cancer brought some old friends back into my life and made the friendships deeper and more heartfelt. I became closer with some aquaintances and now we are dear friends. I've had deep conversations with strangers and deeper conversations with people I've known a long time. In fact, I've honestly had the best conversations over the past 15 months. I have grown stronger as a mother, friend, sister, daughter and woman. I lost my hair but not my sense of humor. I lost my leg and found more stability within myself. I learned how to walk again and I appreciate every step I take. I realized that there is such a thing as "chemo fog," since I am now out of the fog and feeling more alive than ever. I have bonded with fellow cancer warriors and found solice and strength in their midst. Some cancer warriors lost their battle this past year but they are always with us in spirit and they will never be forgotten. I now truly understand the saying, "live every day as if it's your last." I am now enjoying life instead of just surviving. I hope that my journey helps inspire some of you to take a deep breath and enjoy time spent with loved ones. In an instant, life can change on a dime, so never cling to anything and be ready to experience whatever life may throw at you. We are offered no guarantees and there really is no such thing as security. The only security we have is within us and when life throws you a zinger, you find out really quickly, where your blind spots and misperceptions lie. My life turning upside down may have been the biggest blessing in disguise. I know God was with me through it all. What if we all looked at life's ups and downs as equally amazing experiences? Just a thought. I may have argued my own point in the middle of chemo, while throwing up and feeling the sickest I've ever felt or being at death’s door after my white blood count dropped to nothing....yet I learned amazing things from those experiences. I had taken so many things for granted prior to that. Just living.....every taste, hug, conversation, laughter and tears are all pretty amazing. I must say though, dark chocolate is still the best medicine. Oh, and who knew losing my hair would help me discover that you can be beautiful and feminine without hair and that short hair is actually a lot of fun. 

I'm very excited about living. I wake up so curious and hopeful because every day is an opportunity to experience something new, or to see things from a different perspective. 

#sarcomawarrior #synovialsarcoma #cancerwarrior #amputeelife

A Bad Fall

Well, I had heard it would happen, and it did....I took a bad fall directly on my limb. In my Facebook group for amputees, people talk about it a lot. They would warn, "Be careful, whatever you do, don't fall!" People would say that the pain you experience when you fall is the absolute worst pain you will ever feel, and that it goes right through you and you will almost want to die because the pain is so bad. Needless to say, I was worried about falling. Yet, I was pretty comfortable getting around on my scooter and walker and I was pretty sure I could grab onto something if I was falling. Like tripping on a crack in the sidewalk, you don't always see it coming. On Friday night, I was simply leaving an event and using my scooter. I was exiting the building and using the handicap ramp. Apparently, there was a big lip between the concrete path and the blacktop. I didn't see it coming. I was rolling along fine, talking with my daughter Taylor as she was a bit ahead opening the back of the Jeep, so that she could put my scooter in once I got around the car. It happened in a split second, I was rolling along and then my scooter hit the lip in the concrete and my scooter went from under me and there I was, standing on one leg, and panic went through me. You know that feeling, a moment of disorientation and fear, and you cannot think clearly. I knew I was off balance, so in that quick second, my brain screamed....."Put your right foot down to keep from falling!!!" And that was it, I fell directly on my residual limb and down onto the pavement.

I'm not a wimp when it comes to pain, so trust me when I say that the sheer pain I felt when I fell, was like nothing I've ever experienced. I screamed so loudly for what seemed like eternity, as I lay there on the black top. People came running, and Taylor sat by my side comforting me. An ambulance was called as I was laying there, praying that pain meds would be injected into me as soon as possible. I was disoriented, shivering, overwhelmed, and wanted to pass out. Passing out would have been the best thing that could have happened, but no, I stayed very much aware of the non stop, intense pain I was experiencing. I was writhing in pain and wanting to cry but tears wouldn't come, since I was in shock too. People had me take deep breaths and I tried, oh but I tried. I'm sure that my blood pressure was through the roof. The ambulance and fire truck arrived and I was surrounded by men asking me questions. I just wanted pain medicine...."Please GOD, I need pain medicine fast!" Then I was on route to Los Robles hospital, and it seemed like the longest ride ever. They don't give pain medicine in the ambulance so I was counting the seconds until we arrived at the hospital.

I did start crying, weeping actually as we pulled into the hospital. Tears started rolling and wouldn't stop until about 10-15 minutes later, when the morphine was injected into my port. All along, Taylor was a rock. She stayed calm after I fell. She held my hand, she talked to me and in my disorientation...I could hear her voice comforting me. She rode in the ambulance with me and was by my side when they finally injected me with morphine and she recognized her mom again. I'm sure she watched the pain drain from my contorted face as they injected the pain medicine. At that moment, the crisis subsided and I could hold her hand back and rub her sweet face and tell her everything is going to be okay. That's when her tears came, and suddenly she could let herself weep. She had been so scared and she had never seen me like this before. Well, I had never experienced anything of this magnitude before. I've been in labor, had three c-sections, had an amputation, and the pain of those experiences don't hold a candle to the pain I felt from falling on my limb.

Once Taylor and I had a good cry together, we could talk about the experience. Also, at that point, I could muster up the strength to take off my compression socks that were covering my limb. The moment I rolled the last sock off, blood came gushing out. I guess my incision opened up on my limb when I fell. Thank God I had morphine in me, otherwise seeing the blood would have freaked me out. Thanks to pain medicine, I felt chill about it. However, the dose of morphine had brought unmanageable, out of this stratosphere pain down to about a 7 on a scale of 1-10. So I asked for more! They glued my incision and put steri-strips and bandaged me up. They also gave me another dose of morphine. Whew!!

Then it was time to go, as they were discharging me. They got us a wheelchair and Taylor rolled me out to the car. From the simple movement of getting in and out of the wheelchair, my pain skyrocketed back up to 10+. By the time we were in the car, I was shivering again and having a difficult time speaking. We went on the hunt for a late night pharmacy to fill the script for pain medicine. We stopped at one pharmacy that was still open but they were out of hydrocodone. In fact, as my sister called around to other pharmacies, they were all out of this pain medicine. Wow, really!? Luckily they gave me two tablets to try to get through the night, so I had some pain medicine. I was worried though, because I was feeling overwhelmed by the pain and I wasn't sure I would get through the night with only two pills. We called the hospital and almost went back but the staff there wasn't very helpful so we went home. We grabbed Taco Bell, which helped actually and as long as I didn't move at all, the pain would start to abate.

I have been in bed since I got home late Friday night. I only get out of bed to go to the restroom. This is hands down, the most helpless I've felt in 9 months, since this cancer journey started. The pain in my limb is still through the roof if I move at all, even with strong pain meds. I also feel vulnerable. In that moment that I was standing in the parking lot and panic went through me, I suddenly felt like an amputee. I do try to feel like Wonder Woman most of the time, but even Wonder Woman has vulnerabilities. We all do. I felt human, and the pain taught me that I have to protect my limb at all costs. The fall has shaken my confidence. I know that I will have to push through that. I feel a bit scared to use the scooter again (although I can't for awhile anyway because my limb is too tender and sore). I was so close to having my first fitting with my prosthetic and now that will have to be pushed back for maybe weeks. My limb is so, incredibly swollen. It will take awhile for the swelling to subside.

I have time to think and reflect about why this happened. I know this is a wake up call to slow down a bit, and it has forced me to stay in bed. I always try to find a higher purpose to things, so I'm working hard to find the lesson in this. I can feel my limb...I mean really feel where my limb ends. I'm having no phantom pain or limb sensations like I did after the amputation. The pain is so intense but I feel it exactly where the pain is. Somehow the trauma to my limb has sent the message to my brain that my body ends in my calf area. That part is interesting.

I will see my surgeon tomorrow and I will cancel my appointment to see my prosthetist. I'm so bummed that I will not get to try on my new prosthesis for my first fitting. I bet my limb is more swollen now than after my amputation. I feels like it anyway. At my last appointment with my prosthetist, he told me, "Do not fall between now and our next appointment!" See, that jinxed it, LOL. So now, I heal, I rest, and I heal. I cannot do anything else at this point. I'm also bed bound, and on bed rest. The kids and my sister Christine are taking good care of me.

Prayers for speedy healing and recovery (and reduced pain) would be appreciated! Thank you everyone!

Denise

#synovialsarcoma #cancergirl #cancerawareness