Summary of the Ultimate IBC Meetup

History of the IBC Network Foundation

The IBC Network Foundation, which hosts the Ultimate IBC Meetup, was founded by Terry Arnold. In 2007 Terry was diagnosed with triple negative inflammatory breast cancer and told she was going to die. This is because, back in 2007, there was no coordinated effort to fund research or educate healthcare providers on this rare and unique type of breast cancer. 

Like most people, Terry didn’t want to die. She knew her life and the women’s lives who would eventually be diagnosed after her were interesting lives meant to be long lived. They were worth more than being told “there is nothing we can do” before even being given anything to do at all. Terry, along with fellow IBC sister Lori Grennan and her family, wanted to change the narrative. 

The team was smart and knew this started with funding. Lori and Terry went to work, funding a scavenger hunt project in Lori’s hometown in Ohio, which is what led Terry down the path to eventually forming the IBC Network Foundation. The foundation has since funded $1.7 million in research projects, created a network of women for support, and most importantly educated the healthcare community that this disease exists and can be treated successfully.

The Making of the Ultimate IBC Meetup

The first specialized clinic for Inflammatory Breast Cancer patients opened in Terry’s home state of Texas at MD Anderson in Houston. Terry quickly became the welcome wagon for patients coming from all over the world to Houston for the specialized care IBC patients need. One of those patients is Florida native Olivia Franz. In 2020, at just 27 years old and four months postpartum, Olivia was diagnosed with stage four IBC. Olivia quickly found MD Anderson’s clinic, the IBC Network foundation, and eventually Terry.

On one of her visits to Houston for medical care, Olivia and Terry met up for lunch. Olivia casually mentioned how cool it would be to provide a space or meetup just for IBC patients. Terry took this casual conversation and ran with it. In her Texas ways, she lassoed Olivia and her sister Savanna into helping form the Ultimate IBC Meetup. Quickly, the three created an event for IBC sisters, their caregivers and anyone else involved in the community, to all get together in one magical space over a weekend. The goal was to form a community, learn the latest in research, and teach others that they aren’t alone in this orphan disease. 

Houston, We Have a Problem

2023 was the second year of the Ultimate IBC meet up. It was hosted in Houston, Texas, over the weekend of October 6-8th at the Hilton Hotel in the Texas Medical Center District. Luckily, I didn’t have work on the 6th of October this year, so I could attend the meetup without having to take a personal day. 

Knowing I didn’t want to miss any of the action, I took a direct flight from Omaha to Houston. I flew out bright and early on Friday, October 6th, at 6 am. I wanted to ensure I’d make it to the first activity of the meetup on time (a lab tour at 1 pm) and have a little extra time in case any issues arose. I landed in Houston at 9 am Friday with a bit of time to kill. Seeing as I had that extra time and was hungry, I headed towards one of my favorite places in the world, a grocery store called HEB. Nay, not just any HEB but the fanciest HEB in all the land, Central Market.

I’ve only recently learned of this magical HEB from my AYA friends at MD Anderson. They had told me it’s extra fancy and more like a Whole Foods or Trader Joes, but with HEB flair and prices. A must stop for HEB enthusiasts like myself and a perfect place to kill a few hours. I was looking forward to my leisurely morning exploring this Texas sized fancy grocery store when, just two stops from my exit and only 30 minutes out from the airport, I heard a thud thud. The rental car started to veer one direction and slow down. I knew in my soul I had blown a tire, on a rental car, while speeding down the Texas interstate. I took a deep breath and slowly took the next exit. 

Now I’d say long story short here, but truly it was a short story! I called the Alamo rental car agency, grateful I had sprung for extra insurance, and was back on the road with the spare tire on the rental car within 15 minutes. Never in my life have I had such speedy and lovely service in an unfortunate situation. I was absolutely floored! (Much like the blown tire was in the trunk of the car)

While I am amazed at the service I received, having the spare tire on the rental meant I had to go back to the airport to exchange the vehicle I was driving to get something with four working tires. It also meant, per Alamo’s strict instructions, I couldn’t go over 50 mph while driving the car with the spare tire on. Seeing as I was in Houston I knew this meant I had to avoid the interstate, where the speed limit is a mere suggestion and if you’re not going over 60, you might die in a road rage incident.

Driving how Houstons’ see fit (which is actually quite courteous if you ask me) is not a suggestion taken lightly in my world. It took me over an hour to navigate back roads to get back to the airport. Alamo speed limit, and my healthy fear of Texas drivers aside, I will admit the extra long drive time was partly my fault, as I was starving. So when I saw a regular old HEB I just had to stop and get a snack. A silly little tire wasn’t going to ruin my joyous fun morning at HEB, and I was hungry after all.

After a too-rushed-for-my-liking stop at HEB (which resulted in a full stomach), I arrived back at the airport car rental agency. Much to my surprise, Alamo gave me quite the upgrade, an Audi Q5! I’m not sure if they were being nice because they felt bad for me, or they felt I needed extra safety features the upgrade would provide, but either way, I was back on the road. This time was less leisurely as it was already almost noon and I wanted to drop off my bags at the hotel before the Ultimate IBC Meet Up kicked off at the 1pm lab tour. 

Morgan Welch Inflammatory Breast Cancer Program/Lab

The lab tour was at the Sheikh Zayed Building on MD Anderson’s sprawling medical campus. The 12th floor of this impressive building houses the breast cancer Lab. A breast cancer lab that has a whole section dedicated to Inflammatory Breast Cancer Research. As you can see by the photo of me with the building, I was very excited to have this opportunity. 

The tour started with the coolest part—an intimate discussion and lecture on the latest research findings. I was mesmerized by the science, asking multiple questions to some of the world’s leading experts on breast cancer research. I learned all about what different types of research is going on, what they are working on to get published, and what the future may look like for breast cancer care. 

The scientists who gave the lecture were genuine, open, humble, and honest. They were completely thrilled we were there, often amazed by how much we all knew. It felt as though we were both exposing ourselves in a way; by them sharing their passion for science and us bringing their work to life right in front of their eyes simply by being alive. It was like we were both at a theme park seeing magical, mythical creatures in real life, face-to-face, our heroes in front of us and full of nothing but love and admiration for each other. It was pure, beautiful magic. 

Friday Evening

After the lab tour, we headed back to the hotel to relax a little bit before dinner. At dinner, I heard two marvelous speakers. The first was Amy Pitman, a long time survivor of IBC who spoke on her experience living well past anyone expected her to and how she coped with that reality. Next we heard from Diane Koster. Diane is mother to an IBC sister Lindsay, who passed away after only 10 short months with the disease. 

Listening to Diane, an obviously still (and rightfully so) grief-stricken mother, tell her daughters story (which you can read more about here) was one all of us could relate to on so many levels. Besides the obvious parallels of treatment, everyone involved in the cancer world carries an insurmountable amount of grief in their hearts. There is the grief of losing a friend or loved one to this bullshit disease, the anticipatory grief of our own passings, or simply the grief felt over everything taken or changed in our lives because of IBC. 

Diane has managed to harness the strong emotions of grief and love by creating a nonprofit in her daughter’s name called Lindsay’s Legacy Fund. Lindsay’s Legacy Fund is a nonprofit dedicated to providing financial help to inflammatory breast cancer patients. This financial help takes on many forms: from paying for treatment that is not being covered by insurance, to helping cover rent, and helping fund travel to one of the three specialized treatment clinics for IBC in the nation. 

Diane (like Terry and Lori) saw a huge need in the inflammatory breast cancer world. All these women took these needs on by themselves, creating something beautiful and much needed out of literally nothing. They took the pain caused by this disease and decided to not sit idly by. They have changed the world for the better and forever, being real women to look up to. I only hope to have such an impact on the world someday. 

The evening ended with all of us decorating legal paper size manilla envelopes with momentos we brought from home. We then hung those up on a wall in one of the conference rooms with instructions to write each other notes over the weekend and put the notes in the respective person’s envelope. We were told these notes could be generic, personal, encouraging, thankful, —whatever and however we wanted the notes to be. A way to take some of the love and community found over the weekend back to our respective homes with us. It was a tradition that was started the year prior and was quite beautiful. All weekend long, I saw people writing beautiful, handwritten notes to each other, expressing gratitude and love. Then they would try to sneakily put them in their friends envelopes. It was beautiful and I cherish the notes I received. 

Saturday Morning

Saturday morning of the Ultimate IBC Meetup kicked off with chair yoga. After getting up at 4 am the day prior, experiencing my travel woes, having been on my feet all afternoon at the lab, and then sitting in conference hotel chairs for a few hours the night prior, my body greatly appreciated the gentle stretching and release only yoga can provide. I especially liked that the instructor was very well versed in myofascial release, a big issue for breast cancer patients (myself included).

After yoga was a delicious Texas-sized breakfast, followed by a talk by Martha Van Dam, M.S. LMHC, NCC. Martha is a longtime IBC survivor and therapist to many IBC patients. She spoke on the long-term trauma and emotions of IBC. It hit extremely close to home and at times was difficult for me to hear. But it was so needed for our community to know we’re not alone in this wild ride of emotional turmoil that IBC causes. 

Next, there was what in my eyes was the most exciting lecture of the whole weekend. The lecture was presented by Dr. Mark Schaverien and Marc Miller, PhD. It was about lymphedema and reconstruction options post-IBC. During the talk, Dr. Schaverien said that he does lymphovenous bypass for patients in their chest without doing a complete reconstruction flap surgery. He explained how IBC patients are exhausted by the end of active treatment, have grown to mistrust the medical system, and sometimes are simply happy with being flat. He stressed that he doesn’t care why a woman is choosing to stay flat (be it for medical, vanity, or financial reasons), he will respect our choices while still treating a very real side effect of IBC, which is chest wall lymphedema.

When I heard this, I almost burst into tears. I have been begging the Omaha medical community to do this surgery for me, but have always been met with a blanket “no” with little further explanation. I’ve been told my chest wall issues are “just changes from radiation.” That “the tissue is just too fried.” That “there’s nothing we can do besides reconstructive surgery to get healthy tissue in there.” “Chest wall lymphedema doesn’t exist. It’s too hard to diagnose. There’s no way to properly diagnose it.” “Talk to a different doctor on the team.” “The other doctors will all tell you the same thing.”

Honestly, my surgical team in Omaha has made it feel like my chest wall discomfort is made-up or somehow shouldn’t bother me this much. That whatever is going on in my chest shouldn’t be a big deal or cause any issues for me. I have to just “learn to live with it.” “It’s the new normal you’ll have to live with, unless you want to get reconstruction.” It’s almost like Omaha doesn’t believe in chest wall lymphedema, understand the severe impact it has on patients’ lives, or know all the treatment options there really are. 

That’s why when I heard Dr. Schaverien speak so eloquently on lymphedema, how he treats it in every area of the body, coupled with the respect he has for his patients’ medical decisions, I wanted to cry. I knew I had found a doctor I have to see in the future, even if it requires traveling 900 miles to receive the best medical care in the country. I am worth the best medical care in the country and so far it seems like Dr. Schaverien is the surgeon who can give me that. 

Saturday Afternoon 

After an emotionally-charged morning I decided to ditch the meet up for a little bit to pull off a surprise on some of my favorite humans: Wendy Griffin, head of the AYA program at MD Anderson, and my AYA patient friends. Wendy was putting on an in-person event in Houston for AYA patients, and I just so happened to be in town. Originally I hadn’t planned on attending the AYA event, but I knew it would provide the light-hearted reprise I needed to get my mind back into learning and community-building mode. 

This meant driving 30 minutes in the fancy Audi across Houston to attend a charcuterie class being put on by TK Charcuterie, where I was reunited with my friends Libby and Esther. I also got to meet my new support group friend Rebecca and her sister, in person and offline.The four of us were seated in the back of the class and were quite the nuisance. We kept joking around, sharing laughs like old friends do, and having a grand time. A few pieces of my board were even eaten before the class started. It was quite the needed happy break from such heavy subjects back at the meetup and the exact reason Wendy works so hard to put on events for us AYA patients.

The fun free events are much needed escapes for all of Wendy’s AYA patients, (even her adopted ones from Nebraska). It’s why I (and the whole AYA community) loves and looks up to Wendy so much. She’s been able to recognize a need for an underrepresented community of young misfit cancer patients, creating something beautiful from nothing, just because she could. She’s another amazing woman, in a long list of women I’ve interacted with since being diagnosed with cancer, that I continue to look up to and learn from. Wendy radiates with an aura of everything that’s right in this world, always pushing herself and her patients to continue learning and growing wherever they may be. She’s the hero queen of AYAs. 

Back to the Conference

I headed back to the conference refreshed, getting there just in time to hear a talk from a representative of the United States Government’s Social Security Administration. While this might sound like a super boring talk, for someone like me, and my IBC sisters, it was beyond fascinating. As I’ve learned from attending this talk, my social security disability claim misinformation from my social worker in Omaha is actually a common occurrence. Lucky for me (and any other IBC sister who received misinformation), we found out a lot of factual information that means I still have some options should it come to the point I can no longer work. 

After getting all the correct information on SSDI, a lecture from Angela Alexander on clinical trials and the latest in research was up next. She went over what a trial does and doesn’t do, what is covered and what isn’t expense wise, and how to find one/enroll. She then went over one of my favorite things, even more fascinating science from the latest ongoing trials and what the future looks like for IBC research. Again I was just amazed by the science of it all and left feeling extremely hopeful for the future of IBC patients. 

We ended the lecture portion of the meetup with a hands on demonstration and practice of tapping led by earlier presenter, IBC patient and therapist Martha Van Dam. Tapping is quite literally tapping on different acupuncture points on the body while repeating unpleasant, and then pleasant thoughts, as a way to work through trauma or difficult feelings. While I found tapping quite interesting and helpful, I’m still a bit skeptical that I’m at a point in my healing where it can help me. I think I need to be able to identify the feelings I’m having first before I attempt to work through them. But it’s a skill I’ll keep in my back pocket for when I’m ready to do the work. 

Finally, the evening ended in a dinner out in Rice Village at a pasta establishment. We had multiple tables all near each other so people could have intimate conversations and build closer community. I was able to sit with a new friend Mags. We discussed all things lymphedema while dining on fresh mussels, calamari, veal stuffed ravioli and gelato. It was something out of a movie scene. We all became Italian that night—just a big group of family all affected by IBC.

Sunday Morning 

Sunday morning was the close of the conference. Terry had arranged for us to all have breakfast together in a room right near the front of the hotel that she called “The Big Hug.” We spent two or three hours surrounded by new friends, knowledge, and love. It was too beautiful to attempt to put into words. I actually snuck out without saying many goodbyes because I knew if I stuck around too long I’d cry and wasn’t sure I’d be able to stop. Not that there’s anything wrong with crying, I just wanted the conference to remain a magical memory in my mind forever.

Until Next Year 

Next year’s ultimate meetup will be in Boston, once again over the first weekend in October. I’m very excited to hopefully go to another meet up and even more excited to see Boston in the fall. I think the orange leaves will compliment the black, pink, and orange colors used by Inflammatory Breast Cancer Patients as our colors for our awareness ribbon. I’m hopeful that I can be involved in the planning process somehow, meet even more sisters, and learn even more about this orphan disease. I’m hopeful that as research and awareness continues to grow on this disease more and more women are able to attend these meetups. Not only because they are aware it’s happening, but because they are living long enough to make it to them.

With that dear warriors, go have a magical day like I did over that weekend in Houston with all my IBC sisters. <3