Advocacy Opportunity: Participating in the American Association for Cancer Research Scientist Survivor Program

As a recurrent ovarian cancer thriver/survivor who is still undergoing chemotherapy after being originally diagnosed almost eight years ago,  I have volunteered in various forms of advocacy including: 

  • Several opportunities with the Ovarian Cancer Research Alliance as an Advocate Leader in 2014 and 2019, as a presenter with Survivors Teaching Students® program, and as a research advocate. 
  • I have also been a consumer reviewer with the Department of Defense CDMRP Ovarian Cancer Research Program
  • I am a member of the National Coalition for Cancer Survivorship Cancer Policy & Advocacy Team
  • I participated in the American Association for Cancer Research Scientist <-> Survivor Program in 2015 and was selected again this year as a survivor advocate which was a great opportunity for me to continue to learn about research advocacy. 

This year’s American Association for Cancer Research (AACR) annual conference was held in Atlanta with more than 22,000 researchers, scientists,  advocates, and attendees. It focused largely patient-targeted therapies including genome sequencing and immunotherapy as well as clinical trials. The conference spanned five days of presentations and workshops. 

A bit about the history of the AACR and the Scientist<->Survivor Program:

  • “The AACR was founded in 1907 by a group of 11 physicians and scientists interested in research, “to further the investigation and spread the knowledge of cancer.” Today, the AACR accelerates progress toward the prevention and cure of cancer by promoting research, education, communication, and collaboration.” – from the aacr.org website 
  • The Scientist<->Survivor Program began in 1999.  “Through our program, survivor and patient advocates are able to develop stronger backgrounds in cancer research and related issues; keep abreast of recent advances in drug development and basic, clinical and translational cancer research; and be exposed to the knowledge and dedication of cancer scientists.” – from accr.org website.

Some details from year’s conference:

One of the main goals of participating in the Scientist<->Survivor Program is being assigned to small working groups to work on a particular question as it relates to cancer, research, precision medicine, etc.  Within each group are cancer survivors, patient advocates, and each group has at least one scientist who is available to help make sense out of all of the science/research lingo that is prevalent when so many researchers are gathered in one place to share information. At the end of the conference, each working group puts together a presentation to share with all of the other working groups participating in the program.  This project takes a lot of time yet it is fun to work together to find the answers throughout the conference whether it is from presentations, panels, posters, and/or the amazing availability of all of the exhibitors who have a lot of information that they are willing to share. 

As a participant in the Scientist-Survivor Program, we are required to present a poster during one of the advocate poster sessions. We had the opportunity to speak to people who stopped by to look at our posters and ask questions. My poster was about the decision-making process that a patient goes through when choosing to go into a clinical trial or not. I have participated in four clinical trials over the years since my original diagnosis so this topic is very close to my heart. Some of the details included in the poster were how to find clinical trials, how to navigate the details, financial considerations, and how to potentially stay eligible for more clinical trials. I had lots of researchers interested in my poster because accrual for clinical trials can be a challenge.  I enjoyed speaking with them about their challenges as well as sharing the challenges that patients face when trying to decide to go into a clinical trial or how to qualify for a clinical trial.  

Unfortunately, precision medicine and targeted therapies are not an option for all cancer patients due to the complexities of cancer as well as the complexities of each patient’s response to therapies.  There is still much work to be done yet what I witnessed at this conference is that researchers are sharing more information and using opportunities to collaborate to make as much progress as possible so that people can live longer after being diagnosed with cancer. They are also very interested in the patient perspective and are including them when designing research opportunities.

What I enjoyed the most, though, was meeting other cancer survivors and advocates from all over the world.  Within my working group, multiple cancers were represented including ovarian, brain, pediatric, lung, and breast with survivors and advocates from all over the United States as well as Canada and Kenya.  There is amazing strength and compassion throughout the world when it comes to cancer, new research, and the people it affects.

 

AACR.org

AACR Scientist<->Survivor Program Info

 

Atlanta, GA – The AACR 2019 Annual Meeting – Attendees during SSP Closing Session & Celebration at the American Association for Cancer Research Annual Meeting here today, Tuesday April 2, 2019. More than 20,000 physicians, researchers, health care professionals, cancer survivors and patient advocates are expected to attend the meeting at the Georgia World Congress Center. The Annual Meeting highlights the latest findings in all major areas of cancer research from basic through clinical and epidemiological studies. Photo by © AACR/Phil McCarten 2019 Contact Info: todd@medmeetingimages.com Keywords: Attendees – SSP Closing Session & Celebration

Snappy Satan vs. Chemo

I’ve been told on more than one occasion that I become “Snappy Satan” when I’m on chemo. Ok, so let’s examine the facts (in no particular order):

I’m mad that my own body is trying to kill me because it doesn’t recognize cancer as a foreign entity.

I’m mad that for the last 7 years, I’ve been in treatment longer than I’ve been in remission.

I’m mad that I may not see my son graduate from college and have a career as well as him maybe finding a wife and having some kids.

I’m mad that before I get dressed each day, my wardrobe is affected by the fact that I need to remember whether my port is being accessed or if I’m having blood work done at the local hospital. I very rarely get to wear sweaters because of this conundrum.

I’m mad that I need to drive nearly two hours each way to be treated for my cancer because it’s not an “average” cancer that a general oncologist can treat just a mere 5 minutes away.

I’m mad that I have virtually no appetite.

I’m mad that food doesn’t taste good.

I’m mad that taking a shower completely wipes me out. For that matter, just brushing my teeth takes a lot out of me, too.

I’m mad that I get tired easily.

I’m mad that I can’t sleep well.

I’m mad that I sleep too much (not quality sleep).

I’m mad that my family and close friends feel helpless at times because that’s what cancer does – it socks everyone in the stomach and most folks fall to their knees because cancer is just that mean and brutal. Whether it’s the first diagnosis or any number of recurrences, it all sucks for everyone involved.

I’m mad that there isn’t an adequate support group available less than 2 hours away.

I’m mad that there’s no early detection test for ovarian cancer because ovarian cancer is actually a bunch of different messed-up cell types and subtypes.

I’m mad that I can cry for apparently no obvious reason.

I’m mad that anxiety hits me out of the blue when I least expect it.

I’m mad that this cancer knows no age limits and has taken a lot of fabulous women in this world far too soon.

I’m mad that I’m not able to support those around me like I’d like to because I’m just too tired.

I’m mad I’m not able to get out and go snow shoeing or hiking like I used to. Heck, I’m mad that I struggle to walk to the cul-de-sac and back.

I’m mad that I can’t focus long enough to read a magazine article, much less a book.

I’m mad that I need to keep changing chemo treatments because this cancer just goes rogue and multiplies when it wants to.

And then there’s the chemo itself. This is poison that is put into my body while the nurse has gloves, a mask, and a disposable coverup on while I get infused while wearing my regular clothes. This poison isn’t smart enough to look for only the cancer cells. It attacks all rapidly dividing cells which includes healthy cells (thus the loss of hair sometimes). And no doubt it likely affects one’s mood as well.

One thing I’m proud to say is that I’ve never once wondered, “Why, me?” The thought has truly never crossed my mind. I am a genetic mutant (BRCA1+) and thus not surprised with the cards I’ve been dealt. But I can still be mad that this damn cancer still hasn’t learned how strong this gal is and I can be mad that this damn cancer seems to love a good fight.

So yeah, I’m not really surprised that I may snap from time-to-time in looking over the above list. I probably am “Snappy Satan” and if anyone gets offended with my short and direct manner, I will apologize here in advance. It’s not who I want to be. It’s not really you that I’m mad at because I have a long of other things to be mad about. It’s just really hard to keep it all together sometimes.

Thank you to those who have stuck around even in the presence of “Snappy Satan.” I appreciate you. 💜

 

Angelsong is an amazing experience

Going through cancer and chemotherapy leaves most people with some battle scars – both those you can see and those you cannot – and there is often a heightened sense of anxiety at times.  During my own journey,  I have explored all sorts of alternative therapies including diet, herbal supplements, yoga, meditation, and music.  All of them have been very positive experiences for me.  I am open to just about any alternative idea that does not involve hallucinations or drugs.  I also believe that people cross our paths for a reason.  I have met many wonderful people in the last couple of years and one of them is Amy Robbins-Wilson.  

She literally lights up a room when she walks in and has the ability to draw people towards her.  As I’ve gotten to know her, I’ve learned that she possesses two Master’s degrees, she is a Reiki Master and Awakener, and she has the voice of an angel.  One of the more fascinating aspects about her is that she performs Angelsong Sessions for individuals and Angelsong Circles for a group of people. Ah, and what is Angelsong, you ask?  According to Amy’s website (link is below), Angelsong is “a form of energetic singing that is a combination of live a capella-inspired song and healing techniques. Amy opens transformational space through music” to assist people experiencing stress, grief, loss, or those looking for a sense of balance.  She sings over the person/people and smooths out energetic auras.   No, this is not based on science as we know it and it may sound wacky to some.  However, I have been able to experience an Angelsong session firsthand it was unlike anything I have ever experienced.  

The session began when Amy sat me down in a chair that faced a window overlooking the beautiful outdoors.  I closed my eyes and she started singing and moving about the space.  I have no idea how long I sat there because I got lost in her voice and my own meditation.   Afterwards, I felt such a sense of healing and peace.  The best analogy I can draw is that it is a spiritual yoga.  When I do yoga, I am so focused on what I’m doing and on my own breath that I cannot think of anything else and when the class is over, I feel a sense of peace.  This is the same feeling I had during and after the Angelsong session.  No anxiety, no jitters, and surprisingly, the nearly constant pain in my chest where my port had been was gone.  I have a back injury that has gotten worse over the years.  After the Angelsong session was over, my back pain was nearly gone, too.  It’s been a few days and neither pain has not come back.  I still feel centered, peaceful, and feel that I have found another method of healing.   I know, I know….some may say it’s a placebo effect or this can’t really happen because it makes no sense in the scientific world. Whatever it is, IT IS REAL.  If you get the chance, I highly recommend trying one of these sessions.  It is perfect for new moms, cancer patients, those in hospice, or anyone who needs some healing and balance.  It is one of the best therapies I have experienced and if you keep an open mind, it can help you, too.   Check her out at Amy’s website and if you’d like to hear her angelic voice, check out  Amy sings “I Remember You.”

 

 

lake yoga

Some tips on preparing food for a cancer patient

So you want to prepare some food for a cancer patient?  This can present some unique challenges if you have never been through chemo yourself. If you have been through it, this will likely be a refresher for you.  I am very much in favor of someone preparing some meals but it is very important to follow some guidelines.

1.) WASH ALL PRODUCE BEFORE CUTTING IT.  Chemotherapy compromises the immune system so it is vital that all produce be washed thoroughly before cutting it. It should be washed with a food-safe wash (a vinegar and water combination works very well).  If produce is cut first and then washed, then the bacteria on the outside has already been spread to the inside by way of the knife and it is much harder to clean.  Many oncologists discourage their patients from eating raw produce due to the difficulty in cleaning it properly.  Even if it’s going to be cooked, it is very important that the produce is properly cleaned.  If you purchased ‘triple washed’ produce, wash it again.  That stuff is usually washed in some type of bleaching chemicals. Also, do not use ingredients from any sort of buffet (e.g., salad bar, olive bar, etc.) in meals meant for a chemo patient.  The sanitation is a very real concern and it’s not worth the risk.

2.) Prepare smaller meals.  Chemotherapy wreaks havoc on one’s appetite.  It is recommended by many oncologists that patients eat more frequent but smaller meals.  This helps to provide energy and helps to stave off nausea.  Rather than preparing a big tray of lasagna, prepare a couple of smaller pans instead.  This way, the patient can heat up a smaller portion.  I recommend this even if the patient has family because chemo messes with the taste buds and it is likely that not everyone will eat the same food in the house at the same time.  In addition, fatigue sets in the more chemo a patient has and a smaller pan is easier to carry and maneuver.  Honestly, my last two cycles of chemo wore me out so much that I couldn’t even carry my laptop.  My son had to put it in the car and when I got to work, I had to request help from co-workers to carry it inside.  A big casserole or lasagna would not have been an option for me to move from the freezer to the oven.

3.) If the chemo has deadened the taste buds, go for texture.  I chose toasted pecans, almonds, walnuts, and granola.  This gave me some sense of being able to discern something while eating.  Make a batch of homemade granola and package it in small containers or baggies.  If texture isn’t appealing, it may be helpful to include some type of acidic drizzle on the side like a zippy vinaigrette.  I would drizzle a bit of vinegar on top of my soup or sautéed vegetables so that I could taste a smidge of something.

4.) Be careful with spices.  I grew up in San Antonio so I always liked spicy food.  However, during chemo, I had to tone it way down even though I had trouble tasting food.  Spices were hard on my stomach so you may want to tone down the curry and jalapeños.  You can get creative and instead of adding them to the food item itself, maybe make a cracker or biscuit with a bit of spice in it that can be served on the side.  This way,  the person can break off a piece and if it doesn’t sit well, the entire meal isn’t a waste.

Some other tips to keep in mind:

Label everything.  List the ingredients and how to prepare it (temperature, time, etc.).  Even if seems logical that chicken noodle casserole has chicken and noodles in it, there may be other ingredients in it that may be a concern to the patient over time like some spices or garlic or even milk (chemo makes it hard for some people to break down milk products).  For me, I couldn’t stand peanut butter or chocolate.  I didn’t have an allergy but I really could not stand the taste of either and I had loved both prior to chemo.  And even though I’ve made lasagna all my life, my lasagna may not be made the same way you would make it. Spell it all out and how to warm it/cook it/prepare it.  This will also allow the caregivers who are cooking-challenged as well the kids to be able to help.

Think outside the box for meals:

  • Make a soup but deconstruct it if needed.  For example, make a broth-based soup.  Cook pasta separately, drain, and drizzle with olive oil to keep it from sticking together.  Package the cooked pasta in a ziploc baggie, put the soup in a separate container, and have some crostini or croutons in another baggie. (I mention broth-based to reiterate that milk may be a problem for the person undergoing chemo.)
  • Make the fixins for a burger quesadilla.  Stay with me here because this is actually fun and tasty.  Cook up the ground meat and/or veggies (no need to make patties).  Shred some cheese, lettuce, tomatoes, etc.  Package the meat in one container, the toppings in another, and add a bag of tortillas.  All that needs to be done to prepare them is to warm up the meat/cooked veggies (the microwave will do just fine) and then load the tortilla with the ingredients, fold it in half, and cook it in a skillet on both sides until the cheese melts.  Everyone can fix it his/her own way.
  • Instead of making a big 3 lb meatloaf, make meatloaf muffins by cooking the meatloaf in muffin tins instead.  Make a batch of scalloped potatoes the same way.  Pop ’em out, put them on a baking sheet, and freeze as individuals.  They can then be placed in ziploc baggies and labeled accordingly.  Smaller portions are great and kids will love the smaller size, too.

Sweets are great in small doses. For me, I loved apple crisp because I could detect the slightest hint of cinnamon and the crunchy topping was great even though my taste buds were on the fritz thanks to Taxol.  Keep them small, e.g., smaller cookies or slices of pies/tarts. One of my gal pals made triple chocolate cookies with a cake mix and my son loved them so there’s no need to spend lots of time making things from scratch if that’s not your thing.

If you can afford it, please purchase organic and local food.  Organic is better for all of us and if it’s local, the food will be fresher and is oftentimes a much better quality than you will find in the big grocery stores.

Hydration and protein are very important.  Chemo is terrible on the kidneys and it also breaks down healthy cells so hydration and protein are important at every meal if possible.  Water tasted terrible to me but I found that a mild coconut water was tolerable.  If cooking isn’t your thing, buy some small boxes of coconut water or your patient’s beverage of choice.  Include some small protein-packed smoothies (Odwalla and Naked make some good ones) that can be kept in the refrigerator.

Lastly, I want to say how grateful I was to have food brought to my house. Several people pitched in and provided meals for us throughout my chemo  and having those meals ready to go with minimal prep was truly a blessing.  We preferred those to the heavily processed frozen foods in the grocery store.  Don’t ask for permission – just do it.  Whatever you decide to prepare or purchase will be very much appreciated by the patient and caregivers.

Charlie Brown

Musings on a Sunday in a post-cancer world

I am entering my 2nd month of being in remission and it feels wonderful.  However, cancer and chemo have lasting effects.  They don’t necessarily have to be permanent but they indeed make their presence known even after treatment is over.  For instance, I made it through 6 cycles/18 straight weeks of chemotherapy without any neuropathy.  Four days after my last treatment, the neuropathy hit my fingers and toes.  I am fortunate to have access to the wonderful resources in my oncologist’s office.  She has a nurse practitioner who is well-versed in complementary medicine and she advised that some particular vitamins may help increase the circulation for me.  My fingers have gotten better and I’m still hoping the toes improve. In the meantime, I try and stay active and do foot exercises to keep the blood moving.

I mentioned that the neuropathy is still an issue to my oncologist earlier this week when I saw her (I see her every three weeks due to clinical trial protocol).  I also mentioned that ever since chemo, my balance has been a bit “off” and I feel a bit unsteady at times.  Between that and the neuropathy, sometimes I look a bit lopsided when I’m walking.  I asked if physical therapy might be helpful and she was completely honest with me.  She said, “I think oftentimes that physical therapy is overlooked and not asked for when it can be helpful.  I have no problem recommending this for you because it could be very beneficial.”   I felt relieved and I was very glad that I’d spoken up.  I’ve mentioned this before but it is so important to speak up, ask questions, and ask for help if it’s needed.  There is no reason to feel embarrassed in speaking up.

I also had another lesson in humility today. (Now, don’t get the idea that I’m a mower and trimmer and gardener because I’m not – I’ve gladly let the menfolk in my life take care of most of that.  They were around today, too, but we were all going off in different directions taking care of stuff.)  I was outside working in the yard and some neighbors pulled up with equipment and smiles.  The lady jumped out of the vehicle and said, “Many hands make light work!” and with that, her family unloaded the trailer of lawn equipment and got to work.  In less than an hour, my yard was mowed and trimmed.  When they showed up, I was brought to tears due to their generosity.  When they left, I again got teary-eyed.  I am so blessed to have such generous people in my life.  I am also humbled by the fact that my strength and endurance are still coming back and I still cannot do as much work as I did before cancer hit me.  I have to take more breaks to rest and catch my breath.

Lastly, the kiddo is going to prom next week.  THIS has made me feel old.  We went shopping today for “prom attire” and although in the end it was a successful venture, it indeed wore me out both physically and mentally even though we were only in one store.  In an effort to find slacks, a blazer, and dress shoes, the teenage attitude came out and it was exhausting to me.  An hour and a half later – still in the same store – we left with our purchases.

As I reflect on the day, I am so glad to be in remission to be able to accept neighborly help and to tolerate the teenage attitude when it rears its ugly head.  Since being diagnosed with cancer, I have never had a bad day.  I have good days and I have great days.  Today will fall under one of those great days.

%d bloggers like this: