Now there is scientific research showing that the young adult cancer population, aged 18-39, is the most isolated age-group who experiences cancer, and that this isolation is linked to all sorts of quality of life issues. It affects survival rates, reintegration into normal life, and a host of other things. There is data showing that surviving cancer is not enough, we must also be helped to thrive. There is data showing that survival is insufficient.Continue reading
I do not fit the cultural touchstone of a chemo patient. I have not lost my hair from any of my various treatments. I haven’t lost a ton of weight. Sometimes, I desperately wish my appearance would match the war my body was waging on the inside, so others would know the pain I felt.Continue reading
Christina’s Guide to Not Losing Your Ever Loving Mind: Making Insurance, Prescription, and Medical Phone CallsContinue reading
Have you heard of Ring Theory? It’s a fairly simple concept of support and communication that can be extremely helpful for cancer patients and their loved ones.Continue reading
Join Patients Rising on May 14 at 1pm ET (10am PT) for an informative webinar on taking advantage of clinical trials. Clinical trials are at the heart of all advances in medicine. They lead to new innovations in preventing, detecting, and treating disease. They allow researchers to test new treatments and new ways to use existing treatments. Clinical trials determine if new treatments are safe and effective.
There are many reasons to participate in a clinical trial. In this webinar, their panel will help you explore the benefits and risks and how clinical trials can fit into your healthcare plan. They will explain why you should care about clinical trials, how they work, and potential risks. They will answer your questions about clinical trials and point you to valuable resources to search for and learn more about clinical trials.
Please join Patients Rising on Tuesday, May 14 at 1pm ET (10am PT)!
ASCO Connection recently published an article talking about health disparities (“a term commonly used to describe differences in incidence, prevalence, mortality, and burden of cancer related to conditions among specific populations, including racial and ethnic minorities, sexual and gender minorities, older adults, and rural patients, among other groups”…that is a mouthful!) based on where someone lived who was diagnosed with cancer. In the world of cancer survivorship, Lacuna Loft sees people from all over the country. We have participants who are based in urban areas but for whom getting to a place for survivorship support is cumbersome all the way to people who live rurally and have no cancer center (or other known young adult cancer survivors) within a hundred miles. This article isn’t based on young adults specifically, but it underlines the effect that geography has on outcomes…on whether people are surviving their cancer.
“Exciting new breakthroughs in cancer research are helping to make great strides in what is possible for patients with cancer. But they are not necessarily leading to equitable disease outcomes.
According to the Centers for Disease Control and Prevention (CDC), while the overall age-adjusted incidence of cancer is lower in rural areas than urban areas, rural areas have higher cancer death rates. This difference in mortality is growing wider over time. In these instances, new cutting-edge therapies are not enough.”
The fact that this research is fairly recent, done within the last few years, also underlines how important it is for patients to speak up. If a physician doesn’t ask you questions but you have something in your cancer treatment regime that is overly burdensome (traveling for treatments for instance), taking charge and using your patient voice to advocate for better care is a must. This is true in the cancer treatment space as well as the cancer survivorship space. Sometimes, a better solution isn’t possible…but we can always ask!
Read more of this very interesting article here.
With the buzz of the holiday season almost upon us, sometimes it’s nice to slow down for a few minutes. With that in mind, today we’re sharing a yoga tutorial specific for cancer patients. With every pose done in bed, and a bit of guided relaxation, this yoga video is sure to relax and invigorate. If you give it a try, let us know! Have you used yoga in your survivorship?
A few years ago, NPR ran an article featuring four tips to help a foodie get through chemo. In the article, the author shares the four tips that she used when deciding what to eat while undergoing chemotherapy. She emphasizes that sometimes you just have to eat what tastes good! Here at Lacuna Loft, we thought that this advice was great! There are so many articles out there telling you all of the anti-cancer properties of this and that and different food tips for chemo. Once you’re going through chemo treatments though, sometimes you just have to eat what works!
My mother and I always loved a particular diet soda. While she was doing chemo and radiation treatments, all of a sudden I noticed our beloved diet soda’s main competitor starting to appear in the fridge at home. I couldn’t believe that she had made the switch! I asked her about it, and she replied that the old favorite just didn’t taste the same anymore. I experienced some of this myself, once I began chemo treatments. While on a road trip with some friends to a wedding, we stopped at a restaurant for dinner. I ordered something that I’d enjoyed before, but that time around, the food burned my mouth and was almost impossible to eat. I kept asking everyone I was with to try the food, expecting that it was far spicier this time around or had some other component wrong with the food’s normal taste. No one else thought the food tasted any different than it ever did! Then it dawned on me…my mouth had been bothering me all day. I guess I had pushed it to the back of my mind in hopes of enjoying the car ride without thinking of my ailing mouth. Throughout the rest of the meal, I picked around from everyone else’s plate but nothing really tasted good. When we left the restaurant I was still hungry. On the way out of town we stopped by an ice cream place and I got a medium, hot fudge concrete (for everyone not from the midwest, think blizzard).
I ate a lot of ice cream while going through chemo. Eggs were another go to meal for me. I’m lucky enough too that both of those foods still taste pretty good to me now that I am a few years past my chemo treatments. Other foods are still off limits though. For instance, I ate at a Korean restaurant with some friends during chemo. I still cannot stand the smell of what I ordered that day. My husband and I also used to eat at a popular eatery every once in a while during chemo treatments…it was right across the street from the hospital. It took a few months post-chemo for me to be able to even walk into that eatery without feeling nauseous.
Some of these preferences have gone back to the way they were before treatment and some of them haven’t. I think it is just another one of those changes that cancer causes that needs to be embraced, not resisted.
I’m awake, for maybe the fifth or sixth time tonight. Like other nights, it’s a cold sweat that wakes me. I rise up and stare sleepily at the light that shines through my blinds. My body aches, there is no comfortable position to sleep in. I rise slowly so I don’t wake him, and I hear a soft snore that tells me he’s deep in a dream. The weight of my own body almost feels like too much and balance takes real effort. It’s a long walk to our restroom only about 6 feet away. I dampen a cloth and moisten my face and my chest. Sore still both from accessing the port and a deeper pain that I can’t shake.
I haven’t slept a full night in I don’t know how long. In the mirror, I see the reflection of a woman I still don’t recognize. Short fuzzy hair, darkened nails and a round face, moon face they call it; they, the others, like me. I don’t like this woman. I feel a pit in my stomach, a feeling that’s familiar. A cross between angry and sad, my eyes water. It’s time to make my way back.
The more I sleep, the less I have to think. As I lay back down, I hope the next interval comes further out. Maybe I’ll sleep until I have to get up with the kids, but it’s unlikely. I stare up at the ceiling wishing I could cry. I know if I allow myself to start, it could be hard to stop.
The silence is deafening, I lay waiting and the hours pass.
This happens almost nightly, sleep escapes me and I just lay here. I watch him sleep and sometimes catch a giggle. I stare and watch his face as it changes from serious, to a smile and then fades away as quickly as it came. I lay there and wonder what he dreams of so vividly, and I hope it’s of our son (or daughter) in heaven. My heart aches more now, so I imagine something different. A dream where he is a popular Star Wars character, now I giggle.
To be honest, it could be much worse. I’m already expecting good news from a future scan. In fact, yesterday might have been my last chemotherapy session. I feel a sense of deep guilt at that realization, so many fight for so long and here I am, possibly done. I don’t know if I’m ready for what’s next, this “New Normal” the cancer community talks about. What I do know, is it’s in Gods hands now. So, I leave it up to him.
Dana Farber recently published an article about the items one survivor keeps in her chemo bag. That got me thinking…what was in my chemo bag? And what was/is in yours?
I always had a stuffed animal (usually my childhood bear), chapstick (really a must all the time), a bottle of water (I carry a Nalgene with me absolutely everywhere I go), layers (comfy sweaters for the win), headphones, my phone, a game book (logic puzzles were my favorite), an iPad or computer, and a notebook to take notes with when talking with my oncology team.
I am an avid reader but during chemo couldn’t get myself to focus on a book. TV, movies, logic puzzles, and phone games because my go-to activities to distract myself. I also spent a TON of time just staring around the room.
What about you? What’s in your chemo bag?