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.....