A Gift for You Curated through 30 Years of Survivorship

No matter where you are in your experience with cancer, an inspiring story of survivorship is always a boost for the spirit. A treasured member of the Healing Odyssey team recently marked a big point of such inspiration, hitting her 30th year as a breast cancer survivor!

Donna Negrete has been a consistent presence in the Healing Odyssey organization since she came to our seventh retreat in 1997. Since then, she’s shared her wisdom and caring demeanor with dozens of women facing the challenges a cancer diagnosis brings. Donna is a glowing example of how to carry out the lessons of Healing Odyssey’s program to live with resilience and courage.

Help us celebrate Donna through a gift she actually created for all of you! 30+ insights, from the practical to the profound, gathered through 30 years of survivorhood are below and also available for you as a printable treasure!

So, what to do about this BIG to me number?

The year I was diagnosed with breast cancer, on the day before Thanksgiving, my goal was to maintain as many holiday traditions as possible.  That would include hand written notes in each Christmas card, usually done over the Thanksgiving weekend. Well you know what happened there! I instead planned to do it while I recovered from my mid-December breast surgery.  Yes I did!!  It was tougher than I thought as I repeatedly wrote that I had breast cancer inserted in between the news about our daughter and son, ages 9 and 5, my husband’s work at the pharmacy we’d purchased that July, my part-time work as a CPA, and taking on the CFO role at the store, etc.  Lots of emotions splashed everywhere.  I think it wasn’t until half way through that I started writing less about my diagnosis and more about the importance of breast self exams, mammograms, being in tune with your body and proactive when unexplained symptoms arise.  The first half of the alphabet must have thought “she’s really losing it” and the last half that “I had it all together.” Neither were true.

I attended Healing Odyssey’s 7th retreat in the spring of 1997.  It changed my life. I realize this may sound cliche, but I am not alone in saying this – so much so that I volunteered in small ways here and there every year until 2020 when I was asked to join their Board of Directors.  Now, as part of the new era, I serve as Secretary, and I have had the privilege of helping with the transition.  This little organization has itself survived for 30 years, and under its new leadership, I am grateful to report, it looks like it will survive for the next 30 and more.

Below are the things I wished I had known right out of the gate with a cancer diagnosis.  It has taken three decades of volunteering, listening, and life to gain these tools and insights.  No judgement here; these are things that worked for me or that I found to be true in my experience.  Keep what you like, and discard what you don’t.  These 30+ items are in no specific order.  They are a gift from me in honor of my survivorship milestone in the hope this helps you or someone you know.

XOXoX Donna Negrete, Breast Cancer Survivor Since 1995

• Nausea: It is very hard to will away nausea once it starts. I always took my anti-nausea med for at least two days after chemo after I was sure I would not need it at all… until I did.
• Mouth Sores: Salt and water helps greatly. Start before they appear, and rinse/gargle, the more times the better. Frozen cantaloupe chips can be soothing too.
• You are not alone! Support groups are good for learning the ropes. Learn from those ahead of you, and help the ones behind you. Groups come in many shapes and sizes. If one doesn’t fit, find another style.
• If you listen to your favorite song during chemo it may become your chemo Song… always.
• Pay it Forward: You may find that helping others makes you stronger. This has certainly been my experience. Our history places us in the shoes that give us the unique opportunity to provide support through our shared humanity.
• Grumpy people don’t do well. This is not the same as Angry people. Cancer is definitely something to be mad about… F*%# Cancer!
• Attitude is everything. “Every day a daily treat” said Virginia in her 3rd year of treatment, whom I met when I had just started mine. It means everyday do something special to feed your soul. Her examples: wear your fancy jewelry, drink tea from your china, sit in the sun to feel it on your face, [you fill in your answer here.] It helps you stay connected to who you really are, and it can improve your mood.
• Knowledge is power – Know your cancer; Know your drugs and their side effects, etc. It can be helpful to have someone close to you come to your appointments to take notes. It is important to know and understand what the doctor is telling you, as you may not clearly catch everything that was said. Knowing things does not make bad things happen, but it can lead to better results. Reason enough: So you can ask good questions.
• Statistics don’t mean much. It matters little that my breast cancer risk at 36 was less than 1%! I had it 100%. I found my lump, and had I waited until I was at 40, when policy suggests mammograms begin, I may not have had all this “wisdom” to share. How many times have people survived much longer than the estimate? Countless! Statistics can help when taken in context and combined with many other deciding factors. They are not absolute.
• Don’t give cancer any more time than it requires. Not everyday will be bad. On good days, do something! On the not so good, hunker down and take good care of yourself.
• Take proper precautions: Wear a mask! (it was pre-covid for me, and it was not cool.) Stay away from crowds. Wear SPF 50 tops and hats and sunscreen. Put on your compression sleeve (if you need to protect yourself from lymphedema) and go outside. Hydrate!
• Consider that your gray mood might be a drug side effect, rather than your actual state of mind.
• Results can vary. Cancer is personal, aside from the treatment, and so much is based on your constitution, attitude, faith, nutrition, luck, etc. Two people similarly situated can have very different outcomes. Try to avoid comparing your experience with others based on absolutes.
• As cancer is a cell growing rapidly out of control, chemo is designed to kill rapidly growing cells such as the lining of the mouth, nail beds, hair folicles… everywhere. This is difficult, but your hair will come back.
• Integrative Oncology acknowledges the benefits of yoga, journaling, and healthy eating, among many other things we can do to enhance recovery from cancer. Cancer survivors have been doing many of these things for decades, so it is good to know that there are now measurable outcomes backed by science to support it.
• It is very unlikely that you will be cured by an exotic extract from a little known part of the world that is only available online. Be skeptical, and research everything using reliable resources. Always ask your oncologist before taking anything.
• There will be a day when your first thought in the morning won’t be cancer. It may not seem possible, but it is true.
• Maintenance: As cancer survivors, we have a duty to ourselves to follow up on symptoms that don’t go away. This will happen from time to time. For example, you get a pain, you take Tylenol, and a week or so later, it’s still there. I find it helpful to note it in my calendar and forget about it. If it has been a week or so and it’s still happening, I know when I call the doctor to follow up I can describe it more accurately. Maintaining a healthy respect for your cancer history without having it dominate your days is the goal here. Knowing sooner rather than later is almost always better, and it gives you more choices and more time to come up with a plan. This makes logical sense, but emotionally, it takes a beat to adopt.
• Waiting for Test Results: “You don’t know until you know,” I always say. Do not give cancer one more minute than it requires. Worrying about test results wastes time that you won’t get back. It gives it power it doesn’t deserve, and it exhausts your reserves for when it really does matter. I came to this understanding during a time I had a succession of things come up post treatment that included scans, lab tests and a biopsy for different things…all of which turned out to be negative. Wonderful news for sure, but a lot of wasted days worrying.
• Advice: Some people share “miraculous” stories about a friend who knows a friend who… experienced… in the spirit of being helpful. Some are not, ignore those, or ask your doctor. Always get the real facts. If something sounds unrealistic, it probably is. You are smart; ask questions.
• Facts are stubborn things: Facts are important in making smart choices about your care. The internet, social media… don’t go there unless directed to credible sites. A falsehood (lie) does not become fact (truth) if it is yelled longer and louder. That’s not how it works, and some people do not know this.
• You are a survivor on day 1. The clock starts from there. It took me a very long while to use this word, though. For everyone it is different, and you own the right to define your experience.
• Herbs and plants can be drugs. They can interact with prescription items. For example, Digitalis is derived from a plant, caffeine is a stimulant, some herbal products (teas, etc.), soy, and supplements, etc. Consult your doctor before taking anything, especially during treatment.
• Chocolate may taste bad!!! (I would never have believed this if I hadn’t personally experienced it.) During treatment I could not stand this metallic tasting side effect on my favorite food group. I am happy to report this was not permanent.
• Some very helpful drugs cause bone pain. If this is a possible side effect of your drugs, take care as deep stretching, sit ups, deep yawns, etc. can be painful. Gently test your movement if this is the case.
• Sleep heals. Sleep A LOT.
• You can do this! Treatment has so many variables. It is best taken “One Day at a Time.” On good days, “do something;” on bad days, rest. Overdoing can set you back, so give yourself a lot of grace. To be clear, I am not meaning to imply that treatment is at all easy.
• People will surprise you! Someone you never knew will be there for you, and someone who you thought would be there will not. It is not their fault. Some people are just not wired for this, and it is not that they don’t care deeply. Acknowledge that it is not you, it’s them.
• You are not alone. Find your tribe! Support groups come in all shapes and sizes, search out one that fits you. Being among people sharing personal real life experiences in a safe and open space helps to inform future choices you may be faced with, while doing the same for others. There is so much you can learn from people – knowledge is power, right?
• Serious Business… the reality of a cancer diagnosis is that not everyone survives. Some people do not want to hear this. I have found that the risk of not knowing a wonderful someone outweighs the risk of not having known them at all. Someone once said “it wasn’t that the inevitable wouldn’t happen… it’s just that you know the expiration date.”
• Your body, your choice. Some things you can control. I was able during radiation to have the target lines drawn on my body with a marker vs. getting a tattoo. I am very glad I did. FYI, gravity changes everything; my port-a-cath skin scar has moved south 2″ in 30 years. This is true too for my unaffected breast vs. my radiated/lumpectomy side. One side looks like it’s in its 30’s the other side in its 60’s. Don’t be afraid to advocate for yourself.
• Radiation: Exhaustion from radiation treatments occurs cumulatively over the course. It will take one and a half times or more to recover from it. If I had known this going in, I wouldn’t have been so frustrated when it was nearly a year later before I didn’t need a daily nap.
• It is essential to protect your radiated skin from the sun… always. SPF (UPF) clothing, the cleanest effective sunscreen, and hats all go a long way to keep you safe. If you put sunscreen as well as lotion on the backs of your hands, you will be glad you did when you are older. Know that the sun’s rays penetrate glass and some clothing, i.e. through the driver’s side window. I learned this first hand when I got skin cancer on my left forearm from years of resting it on the ledge on the car door. Luckily it was basal cell, but treatment was very unpleasant.
• All the small things make life rich! I have come to believe that it is all the little moments that, when added together, make life rich. The big moments of course have their place, but take the time to enjoy the little moments.
• Help: If someone is offering to help, let them know how to help you. They will be relieved as they may have had no clue. On the flip side, be honest with those who suggest doing something for you that you have no interest in. Kindly provide them with a more helpful alternative. It is also ok to be clear about visiting, including length of time, and how best to communicate with you. Have a friend set up a private blog where you can post general news if that works for you. There will be a lot of appointments, and resting is so important.
• Support: During treatment you may feel well cared for. Your state of health is being closely monitored and immediately responded to. When treatment ends and your hair returns, you will appear to be “back to normal” to the outside world. In reality you may still be recovering from the tiredness of radiation, restricted range of motion from scar tissue, phantom pains, and true loss of feeling from lymph surgery or lymphedema (at least I did). Just when the support system starts to fall away, life may get more difficult. I felt untethered – “where do I go from here?” At 36, the future felt less certain. It was months after chemo ended and my last support group meeting that I really needed help.
• Having cancer is not a “Get Out of Jail Free” card. Life still happens despite being sidelined with treatments and appointments. It does not insulate you from getting other diseases or needing other surgeries. The card it does give you is a front of the line pass when any health issues arise. It also gets you early access to vaccinations and treatments, when they are restricted by age. The card can also be used by genetically related family members for access to advanced screening tests and follow ups, so that they can know sooner than later if ever they have a problem. Use it judiciously. Cancer is something that happened to you, it is not who you are. The other card it gives you, if you are a woman, is an entree to attend Healing Odyssey. I hope you do – www.healingodyssey.org

XOXoX,  Donna 

If you have any questions of me please email donnan@healingodyssey.org or about the program at info@healingodyssey.org

Healing Odyssey was founded in 1994 by an oncology nurse and an oncology social worker who wanted their patients to have an opportunity for deeper connection and inspiration than is typically possible with traditional support group sessions. They developed a weekend retreat program that takes survivors into nature and in community with each other with activities and sessions led by professionals in the oncology and mental health fields. The main goal of the weekend is to give the women a variety of tools to help them move forward emotionally after cancer. The result has been a lasting legacy of support for hundreds of women survivors for 30 years and counting. The founders recently retired, and Healing Odyssey is in an important era of growth with new leadership. Anyone interested in supporting them can help ensure the program remains strong through donations, volunteer time, referrals for corporate partnerships, or recommendations for potential board members in various business fields. The organization is dedicated to its mission to inspire resilience in women cancer survivors for many years to come. See what we do at @healingodyssey.org to see the program in action.

For online support, I would recommend Cancer Support Community of San Gabriel Valley @cancersupportsgv.org. They are located in Sierra Madre, CA; however, almost all of their programs (which are free) can also be attended remotely. This extends to family members, and care givers, and they have programs for kids as well. Their monthly Calendar can be viewed on their website. I have done volunteer work at special events for them for a while now.