Month: October 2021

When Words of Gratitude Are All We Have

Posted on by Abby Westerman

It was October 18th, 2015, the day before Kirsten was to be life-flighted from Stanford hospital in Palo Alto to Rady Children’s hospital in San Diego, where she would spend the remainder of her days as a cancer patient. We had just spent the last three months in the care of not just health professionals but our extended family, and Kirsten felt palpable anxiety and urgency about creating personal thank you cards and arranging gifts to leave behind. She knew it would be a while before she could return to thank them in person.

Kirsten was in the middle of her treatment, still neutropenic and broken-hearted, that she was less than 24 hours away from leaving her friends and extended family in Palo Alto, potentially forever. Everything was happening very quickly once we got the surprising word that her transfer was not just approved but imminent. There were a lot of things that had to be taken care of, but there was one thing that seemed to be the most important to her, and we had less than 24 hours to get it done, and she knew exactly what she wanted to do. She shared her vision and instructions with me, and I was on a mission to get everything needed.

Making time for gratitude

List in hand, I was off to the stationary store to get the materials to create handmade cards and then to the grocery store for ingredients for the homemade treats she often made for her friends during better days pre-cancer. This wasn’t going to be a quickly put-together “thank you.” It was intended to be thoughtful, personal, and heartfelt. As I was running the errands, I would periodically text her images of papers, decorations, colors, and food items to make sure I was getting everything just right. She wanted it to be perfect.

After Kirsten’s cancer diagnosis, the lotus flower had become her personal symbol for what she had endured, and it was to be the centerpiece for the cards we were about to make. She had researched different designs online and set out to create a design template that I would replicate for each of the special friends in the hospital. It was already dinner time, and we had to have everything complete before 6 am since she would be on a plane later that morning and wanted to personally deliver them to as many people as possible.

We worked tirelessly together – but apart. I was at the hotel making giant pretzels dipped in white and milk chocolate and covered with crushed candy bars. Next was the process of cutting out and assembling the lotus flower cards. Meanwhile, she was busy in her hospital bed typing her personalized notes on her laptop. She was fighting nausea, chemo brain, and endless interruptions, but she was determined to finish the task. We stayed connected throughout the night and into the early hours of the morning, periodically texting, checking in, encouraging each other, and most importantly cracking a few jokes to keep us laughing, awake, and on task under stressful circumstances.

She emailed me the draft letters a little after 2 am, and I was blown away by what she sent. Fighting back tears as I read each note, the love and heartfelt gratitude leaped from the pages. What I was not expecting was how her words shined a light for the first time on just how much she worried about the impact of her diagnosis on our family. In that moment, the gravity of her diagnosis became clear. Despite chemo brain and nausea, she created beautiful, thoughtful, articulate notes of gratitude, and I was never so proud and honored to insert these notes into the handmade cards.

It was past 3 am when we exchanged our final texts for the night. We were exhausted but also exhilarated by the products of our late-night teamwork. Our minds were clear, and the important work of documenting her gratitude was done. I think we both passed out and had the best 3 hours of sleep possible under the circumstances.

Morning came all too quickly as I popped out of bed and carefully packed the car with the treats, cards, and gifts and headed to the hospital. That precious cargo was the punctuation mark on the worst three months of her life, made better by people that cared deeply for her. As I brought the items to her room, I instantly saw how proud and excited she was to see how her vision had come to life. It was just how she imagined it. As she handed out the cards and sweet treats, her love and heartfelt appreciation for those that had cared for her was clear.

With the most important task of the day behind her, the time had finally come. The paramedics were ready to prepare her for the long trip to her hometown hospital in San Diego. As she was wheeled down the hospital corridor for the last time, she heard the loving calls from the nurses and staff on duty one last time. “We will miss you, Kirsten!” With her favorite AYA support staff by her side for that final ride to the parking lot, I walked a few steps behind, feeling a wave of emotions. For her, I know she felt anxious, sad, hopeful, and so very grateful for the people that helped her make it this far.

Don’t let words of gratitude go unsaid

I learned an important lesson from Kirsten that day…whatever it takes, don’t let your words of appreciation go unsaid. Whether it is in life’s most dire situations or the mundane day-to-day, try to find, celebrate and acknowledge the good that happens around you. Seize the moment with the urgency and drive of knowing you may never have a second chance to express what is in your heart. Let those special people know that their actions meant something. Be specific about how they changed you, made you feel better, safer, less anxious, seen, heard, supported, more connected, and less alone. Words can sometimes feel like they are not enough, but when they come from the heart, they can be inspiring, uplifting and are often exactly what is needed.

Excerpts from Kirsten’s Gratitude Letters

  • Thank you for being an amazing doctor and going beyond what is asked of you. I could tell you really care about all of your patients and tried to make a connection with each and every one of us.

 

  • I always enjoyed when you came by because there was never a dull moment and you were always nice enough to laugh at all my jokes. You took a lot of pressure off of my family, which was so important to me.

 

  • You were really there for me when you saw that I was upset and I appreciate that.

 

  • You have been one of my biggest supporters and I love that you are working on making a program for young adults. Being here, I’ve realized how important those types of connections are and really admire that you have been working so hard to make us feel more comfortable.

 

  • I really can’t thank you enough for how much you have impacted my family by making sure everything was always taken care of and reducing the stress my family has been through.

 

  • The amount of passion and love that you have for your patients here is incredible and something I admire. Thank you for introducing Crystal and I because it really sparked something here. Even though we broke the rules, it helped the nurses and doctors realize how important it is for the patients to interact and have a friend here.

 

  • You are one of my favorite nurses and you honestly made this whole process for me so much easier. I always looked forward to having you as my night nurse because there was never a dull moment with you and our conversations helped take my mind off of this whole situation.

 

  • You really made patients feel like people rather than just another kid with cancer. You have a big heart and were always willing to put up with my lame jokes and listen to me when I really needed someone to talk to.

 

  • I’m so glad that I was able to have a friend like you in here. Even though life hasn’t always been easy, you have been so incredibly strong and honestly been someone that I look up to.

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What a Stage IV Breast Cancer Patient Wants You To Know About Breast Cancer Awareness Month

Posted on by Chiara Riga

You have probably seen a barrage of pink products everywhere you go in support of Breast Cancer Awareness Month. But what does breast cancer awareness actually mean? Is it pink ribbons? Is it knowing your risk of developing breast cancer? Is it awareness of what breast cancer patients actually go through? How do we effectively support the cause? 

As a stage IV cancer patient, a lot of the marketing around Breast Cancer Awareness Month can be difficult to look at. It’s portrayed as pretty and pink, something that you fight through but then overcome. This isn’t the case for many breast cancer patients, especially those of us who are stage IV and rarely see ourselves represented during breast cancer awareness month. For us, Stage IV breast cancer is not curable, and it will eventually be terminal.

What Does it Mean to Have Stage IV Breast Cancer?

When we talk about stage IV breast cancer, we are talking about a cancer that has metastasized from its original location in the breast and spread to other parts of the body (most commonly, the liver, lungs, brain, and bones). Cancer that remains in the breast cannot kill you – breast cancer will only kill you once it becomes stage IV and has spread to other parts of the body. Many of my friends have asked me if stage IV breast cancer is not portrayed much because it is rare. The answer? It’s not rare.

Here are some statistics to put it into perspective:

  • 20-30% of early-stage breast cancer patients will become stage IV at some point in their lives 

 

  • It is estimated that there are over 168,000 people living with stage IV breast cancer in the US

 

  • The number of people living with stage IV breast cancer is expected to increase by almost 50% by 2030

 

  • Only 28% of people with stage IV breast cancer live more than 5 years past their diagnosis

 

  • Only 2-5% of breast cancer funding goes toward stage IV breast cancer

 

These statistics are sobering, and they can often make us feel helpless.

Here are some actionable things that you can do to support the breast cancer cause this Breast Cancer Awareness Month…

Know your own risk

Awareness starts with you, so the most important thing you can do this Breast Cancer Awareness Month is understand your own risk of breast cancer. Do you have a history of breast cancer in your family? Do you have dense breasts? Do you live an active lifestyle and eat healthy? Do you drink alcohol? All of these things and more play into your breast cancer risk. Bright Pink has created this excellent risk assessment tool in order to assess your own breast cancer risk and be more informed about your health. 

Commit to performing your monthly breast self-exams

Breast self- exams are an incredibly easy, free, and effective tool to learn your own body and catch breast cancer early. But many women don’t regularly perform their breast self-exams. We often have a feeling of “I’m too young” or “it won’t happen to me,” but I’m here to tell you that I had this same mentality, and I was diagnosed at age 27 with stage IV breast cancer. It can happen to anyone at any age, and it’s important to stay on top of your health screenings, especially since you can do it for free at home.

If you’ve never done a breast self-exam before and need a little guidance, check out the free Know Your Lemons Breast Check app. This app doubles as a period tracker and lets you know the best time in your cycle to check your breasts, as well as guiding you through the self-check process and helping you recognize all the symptoms you should keep an eye on.

Support organizations that fund research

Ask someone diagnosed with breast cancer what their most and least favorite breast cancer charities are, and you might be surprised by the answer. Some of the most popular nonprofits in the breast cancer space are actually really disliked by many breast cancer patients for putting profits before patients. When you choose to support a breast cancer charity (or any charity, really), do some research to find out whether they are liked within the community and actually support the cause they say they do.

As a stage IV patient, I want to stress how important research is. Our cancer will eventually outsmart our treatments, forcing us to move on to the next treatment, and so on, and many people do run out of treatments. I currently have a friend in hospice currently because she has no more treatment options left, even though she has much more fight left in her. Research is the only way to find more treatments and extend our lives, so I highly recommend supporting organizations that fund stage IV breast cancer research. My personal favorite charity for stage IV breast cancer is Metavivor. 

What is Breast Cancer Awareness “pinkwashing” and what can you do to prevent it?

Every Breast Cancer Awareness Month, a tidal wave of pink merchandise hits stores with everything from curling irons to bagels to jewelry purporting to support the breast cancer cause. However, many of these products do nothing for the cause beyond slapping a pink ribbon on the packaging. This is what we in the breast cancer community call “pinkwashing”, or — basically exploiting the breast cancer cause for profit or PR purposes.

This is hurtful to many breast cancer patients as we are consistently seeing our trauma being used to as a way increase sales and not to support those that are suffering and dying within the breast cancer community. If you see an item that claims to benefit breast cancer, ask what organization benefits, how much is being donated, and where the funds are going. If you are not satisfied with the answer, don’t buy the product, and call the company out.

Check in on your breast cancer friends this month

As I mentioned in my previous point, seeing the tidal wave of pink can be really triggering for many of us in the breast cancer community. We’re constantly seeing our trauma plastered over every store, billboard, and city bus we see, and it can be emotionally draining. If you have a friend with breast cancer in your life, or even a breast cancer survivor, check in on them and see how they’re doing. They might need a listening ear, a safe space to vent, or a distraction from all the pink that comes in October and you can do a world of good by supporting them through that. 

The bottom line is that it is important to understand what this month is really all about – it’s not pretty and pink, it’s a deadly reality for many. Seek to understand the true goal of the awareness month, and find ways you can make real change for those in the community that need your support.

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Staying Connected Even When COVID and Cancer Keep You Apart

Posted on by Chiara Riga

COVID and Cancer—The Challenges

When you’re first diagnosed with cancer, it’s usually a time when everyone you’ve ever spoken to comes out of the woodwork to support you. MealTrains are started, flowers are sent, donations are given in your honor. But for those of us diagnosed or going through treatment during COVID, that support looks a little different.

I was diagnosed with metastatic breast cancer in September of 2020, right in the middle of the pandemic. I remember when I was first diagnosed, all I wanted was a hug from my best friends. Because of COVID though, I was forced to only see them outdoors, from a distance, with masks on. I was so grateful for their support, but I always wished that we could safely be close to each other. 

When I started treatment, it became even more difficult to spend time with friends. There were many times where my blood work would come back showing that my immune system was dangerously low, and that I shouldn’t be around others at all. Cancer is already isolating, but when you add COVID on to that, it can become even more isolating to not be able to see others in person.

With the surge of the delta variant in the US, these COVID precautions have become important for cancer patients again despite vaccinations. If you are trying to support your friend through cancer during COVID, here are some suggestions for safe things you can do:

covid and cancer

Plan Something Virtual

Some of my favorite times I spent with my friends while COVID kept us physically apart were the virtual activities we planned. I love games and have a very competitive streak, so we did a lot of virtual trivia and virtual escape rooms. It was always a fantastic time “seeing” my friends on the screen and playing something together like we would if we were able to be in person. These are just some ideas that I have tried, but the sky is the limit on virtual activities!

If your friend is into crafting, why not do a craft night together on Zoom? If they love to cook and still have an appetite, try a virtual cooking class through Airbnb’s virtual experiences! It doesn’t matter what you do, just knowing you’re thinking of them and are setting time aside to be with them will surely brighten their spirits. If you’re interested in some of the virtual activities I tried, here are my recommendations: for virtual trivia, check out Sporcle as they run live virtual trivia most days, often with fun themes, and it’s always a great time. For virtual escape rooms, The Escape Game has a variety of great options. 

covid and cancer

Outdoor Socially-Distant Activities

When cases were low in my area, and my blood counts cooperated, I loved spending time outdoors and socially distanced with my friends. We got really creative with how we spent time outside, from carrying a TV outdoors and having cozy movie nights under the stars (with masks on and our chairs spread out) to outdoor tea parties where we each sat at different tables and wore masks when we weren’t eating or drinking. This was about as close to a normal friend hang out as I could get, so I cherished this time so much and appreciated my friends for being willing to sit outside bundled up in blankets just to spend time with me.

FaceTime Them While They Get Treatment

Many cancer centers still aren’t allowing patients to bring support people in with them for chemo infusions. This can lead to AYAs feeling especially lonely – I know when I’m at the cancer center, I’m always the youngest one there by at least 20 years and can often feel isolated because of it. Talk to your friend about their treatment schedule, and ask whether they would like to chat while receiving chemo. You can FaceTime them, call them, or even just text (I love when people send funny memes while I’m getting treatment).

Knowing you’ve set aside time to be there for them, even though you can’t physically be there, can help with the isolation of being there alone. I have one cancer friend who always gets chemo in a chair by a window. Her friends drop by that window with signs cheering her on, or even just sit outside the window and chat on the phone with her so that it’s almost like they’re hanging out in person. Depending on the setup at your friend’s cancer center, this could also be an option! 

Help Them Out with Chores from Afar

Your friend might be too tired to grocery shop, cook dinner, pick up prescriptions, or even walk their dog. These are all things that you can help them with while still staying socially distanced! You can drop food, prescriptions, or their favorite takeout/a home-cooked meal on their porch, and if they’re up for a visit when you drop things off, you can stand outside and distanced while wearing a mask. If they need help with a pet, you could pick the pet up from their yard or other outdoor area and walk it while they rest. While being indoors with your friend might not be an option right now, you can still support them from afar if you talk to them about their needs. 

Use the b-there Tool to Plan Support

Most of the suggestions I have listed here for supporting your friend from afar require that friend to be feeling well enough to spend time with you. The b-there tool is a great way to understand your friend’s needs and limitations, and using the information they share within the tool, you’ll be able to plan your support accordingly. In addition to coordinating activities, it also lets you know how they want to connect and what they are in the mood to do. Flexibility is key. Remember that they might wake up one day and not feel up to something you had planned that day. While it might be disappointing or even hurtful, try to remember that it’s not personal. 

The Bottom Line

Don’t let the pandemic restrictions keep you from spending time with your friends. You may not be able to do something every day, but by allowing yourself to get creative and think outside the box, you will be amazed at how many ways you can continue to enjoy each other and have fun doing something together…even if it is more than six feet apart.

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