Dear Cancer Letter Campaign

person typing on computer with coffee

Elephants and Tea has started their first annual “Dear Cancer” campaign!  They are currently taking submissions for their December magazine issue that will be all letters to cancer.

They want people to speak from their heart and be completely honest in their writing.  They expect these letters to be raw and emotional so do not feel that anything needs to be sugar-coated.  Their goal is to post a letter every day in December on their website and the best of the best will be featured in their December magazine (both print and digital versions).

The deadline is Friday, October 18th!

You can learn more and submit your letter here!

Record Your Important Health Conversations With Abridge

Lacuna Loft is always on the lookout for resources, tools, and other organizations who are helping the young adult cancer community.  We like partnering with them and we LOVE sharing them with you!  Today, I’m super excited to share a great new app that was recently released by Abridge.

Their app lets you record a conversation with your doctor, then it transcribes the verbal conversation into text, and picks out the really important parts.  You can easily tap on any medical moment to replay that specific part of the audio, so you can quickly get to the part you want to relisten to. This makes it so you can easily go back to confirm details you missed, or share the conversation with someone who wasn’t able to be there with you. Plus, the app maintains your privacy and never sells your data! The info you record is for your eyes only (or for whoever you specifically share it with) to better stay on top of all of those details you get at a doctor’s visit.

Our CEO, Mallory, and one of our program participants, Megs, recently tried out the app and are sharing their thoughts with us today!  Plus, you can scroll to the bottom of this post to see an easy gif describing the app!

Megs:

I’m excited to share my experience with this new cancer app called Abridge. The app helps patients and their caregivers record their health conversations with healthcare providers. It then takes those verbal conversations, transcribes them, and picks out the really important parts.

It was easy to register. More importantly, it was super easy to use.

I used it for my appointment with my palliative care doctor. I simply asked my nurse and then doctor if I could record our discussion. I pulled up the app and hit the record button. BOOM!

You can pause it and then keep recording until you’re completely done with the appointment. Once you hit the done button, you can save it and input a title for the recording. The app will work its magic and gather the important insights from the conversations with your healthcare providers.

Then it produces a transcription of every word spoken highlighting important keywords. The type is clear. It breaks down the conversation and timestamps it.

From there, you can share it with your family and anyone else who has downloaded the app. You can write a message, which is optional, input their email address and the app sends the message. The receiver of the message will see your personal message and then directions to download the app and register. Once registered, they can hit play and listen to your recording.

I’m impressed with this app. I find it a necessary tool for every doctor appointment. We’re often hit with so much information when talking with our doctors that we can miss other key information. This app captures every word. It allows us to fully process what is said in each visit afterward.

I highly recommend this app to every cancer patient and their caregivers. It will take the pressure off trying to take notes during the appointment so you can be fully present in the moment.

Mallory:

I tried out the Abridge app at an appointment with my OBGYN.  I was able to easily start the recording with a simple press of a button and it picked up both my own audio and that of my physician.  The app made it really easy to go back and look at what my doctor had suggested…my appointment was later in the afternoon and my attention span isn’t always as good after lunch. 😉  I was also able to email a link to the recording to my husband who wasn’t able to go with me.  The app made sharing my appointment’s transcription and audio very straight forward.

Later in the week, I actually used the app again to record my half of a phone conversation with another doctor, one taking care of a family member of mine.  I sometimes get off the phone with her and realize that I remember more of my own questions than I do her responses.  While the app could only pick up my audio, I basically repeated back to her everything she suggested so the app recording could pick it up (and so I could go back and look at it later!).  In the call, the dosage of both medications my family member needs was being changed,  as well as how often to take them.  Later in the afternoon, I realized that I couldn’t remember which new instructions belonged to which medication.  I was able to readily go into Abridge and check both the audio and the transcription to safely check what the physician had told me.  It saved me a call to the doctor’s office, because we all know how long that turn around time could be, and it gave me peace of mind right away.

I’d highly recommend this app.  It’s easy, right there on your smartphone, and takes all of the guesswork out of what details I could recall after an important health conversation with my doctor!

And that’s it!  Two recommendations for a great new tool to help you take better charge of your own healthcare.  Download the app today and let us know how you’re finding it!

Support The Metastatic Breast Cancer Access To Care Act

capitol hill

Our friends over at the Young Survival Coalition have just shared this great, legislative advocacy opportunity with us and we couldn’t wait to share it with you!

From now through September 9, you have an important opportunity to make your voice count!   The Metastatic Breast Cancer Access to Care Act is an important legislative priority of the National Breast Cancer Coalition that concerns Medicare and Social Security eligibility for metastatic breast cancer patients.

If passed, HR 2178/S 1374 would waive the 24-month waiting period for Medicare eligibility and the 5-month waiting period for Social Security Disability Insurance benefits.

During August, Congress is on a break, so it’s a great time to reach out.  You are your own best advocate, and this is an important opportunity to make a difference!

Take action today!

It’s A Troubling World

woman in front of brick wall

This world is troubling on so many levels. I can typically handle one thing at a time but not a total shitstorm within two days. I will go ahead and warn this piece will talk about race in relation to cancer.

Believe it or not, race plays a part in the cancer experience. I’ve dealt with many nurses, staff at cancer support communities and fellow warriors in online support groups who automatically assume since I’m black that I must have triple negative breast cancer. They have sometimes talked down to me.

No, this is not my imagination. This is not me being overly sensitive.

I blogged about this particular incident when I first started my blog in November 2017. It’s worth repeating. Some will innately get the insult and frustration. Others will not see why it was a big deal. All I can do is speak my truth.

It was almost a month after I started chemo in October 2015. I decided I needed help processing what was happening. I’ve always been a big supporter of therapy and support groups. I’m a talker and like to talk things out. At that time, I didn’t know any other 39-year old’s going through this. I needed support.

I went to the Cancer Support Community in Atlanta, GA. In order to join a group, there is an intake session with one of the staff members. I had spoken with her on the phone and was really looking forward to meeting her. I was already fatigued, nauseous and had worked a full day by the time I arrived. I was expecting to feel relaxed and heard.

The woman, who was white, gave me paperwork to fill out. Once done, I handed it to her, and she reviewed. This is where my frustration begins.

She asked, “Are you sure you’re not triple negative?” I was puzzled by the question. I knew what my diagnosis was, and it was stage IIA invasive lobular breast cancer. Maybe she couldn’t read my writing, even though my writing is very neat and specific.

She asked again, “I just want to double check. Are you sure you’re not triple negative?”

This time I was annoyed and responded back sharply, “No, I wrote my diagnosis. Why are you questioning my answer?”

She said, “Well, most African American women who get breast cancer are triple negative. It’s very prevalent in your ethnic group.”

Now, her questions would’ve have been appropriate if I didn’t know my diagnosis or specifically asked about what type (s) of cancers are prevalent in the black community.

Only, I specifically wrote my diagnosis and verbally told her what I had, yet she still questioned me like I didn’t have a clue of what I was talking about.

It was that moment I realized she didn’t see me as a cancer patient. She saw me as a BLACK cancer patient. Understand the distinction?

Every question from that point was about race. I was there to talk about cancer and not the black experience. I left shortly after that exchange.

Cancer does not discriminate, so why was she?

Let’s fast forward to today.

Many cancer patients, whether in active or post treatment, spend much of their time going to the pharmacy to pick up medication. This pharmacy doesn’t have a drive thru. I was at Target. I needed to pick up my refill of the arthritis medicine. Yes, I have arthritis in my knees and hands. That’s a story for another day.

Though I was only there to pick up my medication, I got a cart to lean on since my fibromyalgia pain is a 12 today. There was a line and no place to sit down.

There was a white mother and her young son in front of me acting up.

She said, “See this BLACK woman? If you don’t hush, she’s going to hit you with her cart.” The kid starts crying. I’m speechless. I saw first-hand how racism is taught.

Now that little boy will associate black/brown women as harmful, cruel and punishing.

I was paralyzed and slowly backed away and went to another part of the store for a bit before circling back to get my meds. Keep in mind, there was a white woman behind me who witnessed this whole thing. She was conveniently looking down at her cart, not wanting to get involved.

I’ve experienced lots of racism but never in front of an impressionable child where a mother is saying because of my skin color that I would hurt her child.

I’ve even had the same thing said to me at a different pharmacy but that white woman said, “See THIS woman? If you don’t be quiet, she’s going to hit you with her cart.” That happened earlier this year.

What is it about threatening kids with carts?

I did say something in that instance, and she did a double take when I said it was not okay to say that.

This time was different because this white woman specifically mentioned my skin color. That’s why I felt paralyzed.

I posted this incident on my social media this afternoon. I received many comments of my friends, many white, saying they would’ve stuck up for me and said something to that racist woman. If I were a white woman, I think I would’ve said something.

As a woman of color, I knew to keep my mouth shut and walk away. There is no reasoning with people who have that mindset of hate.

Until next time,

Warrior Megsie

Megan-Claire Chase is a three-year breast cancer survivor in Atlanta, GA. She is a marketing project manager by day. In her spare time, she writes a blog called Life On The Cancer Train at www.warriormegsie.com and is a published cancer blogger for Lacuna Loft, IHadCancer.com, CancerBro, Humor Beats Cancer, GRYT Health, WILDFIRE Magazine and Rethink Breast Cancer just to name a few. One of her biggest achievements in 2019 was co-presenting an abstract on AYA perspectives on fertility preservation conversations with healthcare providers at the American Psychosocial Oncology Society (APOS) conference in Atlanta. She also has cat named Nathan Edgar who is her pride and joy.

This piece was first published at WarriorMegsie.com.

West Coast Cancer And Careers Conference

On Saturday, October 26th in LA, Cancer and Careers is hosting its annual West Coast Conference on Work and Cancer!  They’ll be talking about setting boundaries in the workplace, disclosure, working through treatment, and so much more.  The event is free and definitely not to be missed!  Plus, until August 25th you can apply for a travel and/or lodging scholarship!  Check out more about the conference here and more about the travel scholarship here.

Become An Empowered Survivor Or Advocate At A Triage Cancer Conference!

triage cancer conferences

Lacuna Loft is happy to be a sponsor of the Triage Cancer Conference series! The Triage Cancer Conferences provide individuals diagnosed with cancer, caregivers, advocates, and oncology healthcare professionals, with valuable information about understanding your health insurance options, navigating employment issues, managing finances, and more. Register for FREE here!  2019 Conferences will be in Chicago, IL, Chapel Hill, NC, & Houston, TX – travel grants are available!

Who should attend?

Individuals diagnosed with cancer, caregivers, health care professionals, & advocates will learn about:
– Understanding health insurance, picking a health insurance plan, and appealing denials
– Accessing clinical trials
– How to work through treatment or take time off
– Applying for disability insurance
– Estate planning and other important documents
– Managing medical bills, finances, and getting financial help
– Becoming an empowered patient and advocate
– Dealing with how to grow after trauma

Become an empowered survivor or advocate today by attending a Triage Cancer Conference!

“Genetic Testing in Oncology To Improve Clinical Outcomes”

myoncopath white paper

I’m super excited to share a white paper with you today from MyOncoPath, an innovative company helping cancer patients and their healthcare providers identify genetic testing that could play a role in personalizing cancer treatment plans.  They also provide a hereditary risk assessment for patients and family members with preventative care.  They are a telemedicine clinic working to support patients and healthcare providers!

Genetic testing is one of those things that we keep hearing more and more about but it’s great when a company actually explains a topic’s importance and breaks down all of those clinical-sounding terms!  MyOncoPath has written a white paper doing just those things, entitled, “Use of Genetic Testing in Oncology to Improve Clinical Outcomes in Preventative Care and Personalized Medicine.”

“Hereditary tests are important for patients already diagnosed with cancer, as the results can expose crucial information about the specific, most effective treatments available, the patient’s risk of cancer recurrence, and the risk of the patient’s blood relatives developing cancer.”

Check out the rest of the report!

Free Work And Cancer Midwest Conference

workplace table

This free, full-day event is hosted by Cancer & Careers and is open to patients, survivors, caregivers, healthcare/HR professionals (with CEUs!) and anyone else touched by cancer.

Topics include:
Disclosure, privacy & online brand
Key laws such as the ADA & FMLA
Managing side effects at work
Strategies for communicating with managers & coworkers
Looking for a new job
Disability insurance
Health insurance options
…and more!

Location:
Northwestern Medicine Prentice Women’s Hospital
250 E. Superior St., 3rd fl., Chicago

Date & Time:
Friday, March 29, 2019
Check-in 8:30 AM
Conference 9:00 AM
(Breakfast and lunch will be provided.)

Space is filling up fast so register today!

Grab A Limited Edition Gala Tee Before They’re Gone

gala limited edition tee

We know that most of you aren’t close enough to the midwest or the Chicago-land area to attend the Gala.  (But seriously…wouldn’t it be awesome if you could?!)

Even if you can’t join in on the evening of fun, you can still grab a limited edition, event tee.  Only sold leading up to and at the Moon Walk Gala, we won’t be making these tees again.  Grab yours today before they’re gone!

Grab yours here!

Join Lacuna Loft At The Moon Walk Gala

moon walk gala logo

Join us at the Moon Walk Gala! An intimate evening to support Lacuna Loft and raise funds to support programs for young adult cancer survivors throughout the year! Enjoy cocktails and hor d’oeuvres while partaking in a Silent Auction and a 50/50 raffle, fun with Lightform, and more! Meet great people and have a wonderful evening of frivolity!

Where: 1821 W. Hubbard Street Suite 307 Chicago, IL 60622

When: Saturday, October 27, 2018 from 6-9 pm

Who: You!

Attire: Semi-Formal

Buy your tickets today!