I am an avid NPR nerd, however after I heard a piece about lymphedema, I knew I needed to write them a letter....
As a Physical Therapist and Certified Lymphedema Therapist, I was surprised and pleased to hear the word "lymphedema" on Morning Edition (Monday, 2/19/18). As mentioned in the piece, it is often overlooked by health care professionals, at a detriment to our patients.
However, I quickly became disappointed when I heard the following: "They're crying, not only because they struggle with lymphedema," he says, "but because many people, including some doctors, do not recognize this as a debilitating condition that can require laborious, daily care."
Yes, as I mentioned above, many doctors do not recognize this condition. My issue, however, is the constant fear we instill in women when talking about lymphedema. These quotes are perfect illustrations, the patients are "crying," the condition is "debilitating," the treatment is "laborious, daily care."
Even the title of your piece illustrates my point: "She survived breast cancer, but says a treatment side effect, 'almost killed' her."
As a certified lymphedema therapist, I can state that yes, sometimes lymphedema is debilitating and can certainly require laborious daily care, however those are the WORST CASE situations. It is just as likely a woman will notice some swelling in her arm, breast or trunk and with a few visits to physical therapy, will have it under control or even completely resolved.
Your piece is certainly not alone in promoting fear around lymphedema. Many of my patients say some version of "I'm terrified of developing lymphedema!" or react to every novel sensation in their body with a frightened, "that's not lymphedema, is it?" Honestly, this breaks my heart. These are strong, brave, resilient women who have looked cancer in the eyes, and beat it. Why must we then beat them down with exaggerated ghost tales of lymphedema, a side effect they may or not develop, that may or may not be "debilitating?"
When we take this method of fear based education away from lymphedema and apply it to say, back pain, it sounds ridiculous. Can you imagine saying to a person, "Wait! Don't lift that suitcase! You might get...BACK PAIN! Once you get it, it's chronic! You will need injections and surgery to correct it and even then it will require laborious, daily care!" Truthfully, that is a possibility. However it is one out of many possibilities when someone injures their back.
I feel strongly that it is my job to empower my patients with knowledge, not patronize them with fear. I welcome the opportunity to speak to you in greater depths on this topic.
Jenni Rai, PT, CLT
This letter to NPR is just the beginning of my "take the fear out of lymphedema" (catchier title in the works) campaign. Stay tuned for more!
The original NPR article can be found here.
Allison will teach #our first ever Facebook live streamed course about Essential Oils on March 4th, 2018, 11 am PST. To attend live, RSVP at email@example.com. To view remotely, join #our private FB Group!
Questions about Essential Oils for Allison? Submit below by March 3rd.
This will be our first workshop shown live on Facebook! Join our private FB group (#OurTribe) to attend virtually, or RSVP to firstname.lastname@example.org to attend in person.
I just want to point out my use of "And we're back!" in this next one as if we all just went to commercial break or something....?♀️
It can't be acknowledged enough- a diagnosis of breast cancer is frightening and extremely stressful, for the diagnosed and those that love them. A good mental health practice is a MUST, but can be hard to get in place. The below is a list of national resources:
American Cancer Society (General referrals and info)
CancerCare.org (General referrals, info and online support)
National Cancer Institute (General referrals and info)
Imerman Angels (One on one support for patients and caregivers)
4th Angel (Caregiver and patient mentoring program)
24 hour support line (not specific to cancer)
Have you found a particular resource to be helpful? If so, post below! We love to learn.
One of the glories of menopause is dry, irritated vaginal skin. It was such a common complaint in our private FB group that we reached out to the experts, including Beverly Hills sex therapist, Dr. Shannon Chavez, for some advice.
First off, it turns out that the skin in your vagina can be moisturized daily just like the skin on your face! Imagine how dry, flakey skin anywhere else on your body can be itchy, irritated, and more prone to cracks and cuts. The same is true for vaginal skin. Hip Hemp has created “moisture drops,” which are small pearl-sized suppositories containing organic hemp oil, grape seed and vitamin E. Hemp oil has many benefits, including immune support as well as Vitamin C which helps to synthesize collagen. It is recommended to insert vaginally at bedtime.
In addition to daily moisturizing, lubrication is essential. Dr. Chavez’s favorite is from a German company, called “Pjur Med.” They offer both silicone and water based lubes. Their Repair line includes Hyaluron which has the ability to bind large amounts of water which provides better than average lubrication. This extra amount of hydration helps enables optimal regeneration of the vaginal skin.
What have you found to be most effective for dealing with vaginal dryness? Share in comments, we’d love to learn from you!
Losing lashes and eyebrows is a common side effect of chemo, and the regrowth period can be painfully slow! The team at #OurTribe got together to compile their best tips and products to help you through this time.
During chemo, tribe member Jessica used ice packs to brows and lashes, like tiny cold caps for your face. The use of cold closes (or "vasodilates" if you're feeling fancy) the blood supply where it's applied, and this prevents the chemo from penetrating these regions. For those who have already lost lashes, eye drops are a must have in your purse as your eyes are more likely to become irritated. If irritation persists or eyes become red, speak to your oncology nurse about a prescription drop. Paige Woodward, NP, likes Systane or Refresh Drops.
For others, a lack of eyelashes can cause constant eye tearing. Since you’ll need to carry tissues with you anyways, why not be eco-friendly with these organic cotton cuties.
Several tribe members used castor oil at the base of their lashes to promote growth. Castor oil contains a high percent of Ricinoleic acid which penetrate the pores of skin and hair follicles and is essential in hair growth. It is also antibacterial, extremely moisturizing and has anti-acne abilities! Castor oil's main downside is it's gloppy consistency, and as tribe member Emma puts it, “let’s just say it’s definitely only a night time ritual!” To make the process less messy, BaeBody’s Castor oil serum comes with teeny tiny lash line sized brushes. It can be used on brows as well.
While you're waiting for the Castor oil treatment to kick in, Cherry Blooms will give you the look of salon lash extensions that are easy to apply at home.
It adds microfibers to your existing lashes, and luckily it’s waterproof in case you fall into the “eyes water all the time” category.
Skin Research Laboratories Neulash and Neubrow are favorites of tribe member Lori. According to Lori, even before chemo her eyebrows were lacking, but since using Neubrow, she no longer "draws" her eyebrows on before leaving the house!
One downside, she noticed when not using the product, her lashes and brows returned to their prior, thinner state.
The priciest, but perhaps most lauded in the Tribe, is Rodan + Field’s Enhancements lash boost. in about 8 weeks, This nightly eyelash-conditioning serum features a unique proprietary formula thickens and lengthens stubbly post chemo lashes.
If all the products in the world still don’t stimulate your brows, Microblading is a more permanent solution. Check out our blog post for more info.
Do you have any favorite products or tips to help bring back your eybrows and lashes? If so comment below, we’d love to learn from you!
Is it a power surge? Or tropical vacation for one? Whatever it is, we're not amused.
Hot Flashes are a particularly irksome, and odd side effect of menopause. I was curious as to why they happen- just what part of leaving child bearing age has to do with sudden uncontrollable heat? The Mayoclinic.org revealed what I had begun to suspect after a quick google search: the cause of hot flashes during menopause is unknown. It’s suspected that decrease in estrogen as well as changes in the hypothalamus (the body’s thermostat) are to blame.
Whatever the reason, I think we can all agree they are TERRIBLE! And although there is no “quick fix” solution, I’ve complied suggestions from Tribe Members to try and make them more tolerable.
This one seems a little on the obvious side, but worth mentioning. The Mayo Clinic recommends dressing in layers to remove if you start to get warm, as well as keeping the ambient temperature on the lower side. Tribe Member Carrie is a big fan of the Evian facial mist spray. "I want to share with my fellow warriors this amazing remedy that I use for hot flashes. It is worth it's weight in gold. The mist and canister stays cool.”
If a cool mist of water in the face isn’t enough, try adding the power of an electric fan. Tribe member Debra is a fan of this portable model: "I bring mine everywhere. It also folds so you can rest it down without holding it. I brought it to dinners, doc appts, everywhere."
However, there are times when a woman needs the refreshing breeze of a fan, AND a sexy, retro accessory. For those times, Tribe member Delaney suggests this hand held beauty.
A good deodorant:
If you’re going to sweat, a powerful deodorant is key. And if you’ve been diagnosed with breast cancer, chances are you pay special attention to what you put in your armpits. Most conventional deodorants include potentially harmful chemicals, including Aluminum (linked to alzheimer's disease) and parabens (which can mimic estrogen). Many of the #OurTribe members in our private FB group have done extensive research on this topic and test drove a variety of all natural products.
Schmidt's was voted "Most Popular" for having graced the majority of our armpits and keeping us sweet smelling and dry. At time of this writing, there was still no consensus as to the best scent, however Lime had a slight lead in the polls.
Lavanilla gets a special mention in the scent category and also a nod for long lasting results
An insider tip about adopting a natural deodorant lifestyle is there is often a stinky "detox" phase when your armpits are adjusting. The charcoal and apple cider in this soap help kill the stink making bacteria helping your new natural deodorant do its job more effectively.
What have you found to be most effective for dealing with hot flashes? Share in comments, we’d love to learn from you!
This month's #OurStories is written by Marni Sanders, and illustrates the strength of a mother's love for her munchkins and the benefits of a dark sense of humor...
March 2009 was one of the best weeks of my life.
After struggling for years to get pregnant, we finally hit the IVF jackpot and were on our way to having twins by the end of the year.
During a routine ultrasound with my OBGYN, he noticed a small white spot on my daughter’s heart. This was right before Thanksgiving and I was 34 weeks pregnant. The OB said I needed to see a perinatologist (high-risk pregnancy doctor) right away. I was scheduled for the very next day.
After the perinatologist examined me, he said that it was highly likely that my daughter had this disease called TSC (Tuberous Sclerosis Complex) which is rare multisystem genetic disease that causes non-malignant tumors (referred to as “tubers”, as in the name) to grow in the brain and on other vital organs such as the kidneys, heart, liver, eyes, lungs, and skin.
He also informed me that TSC is one of the diseases that you could legally terminate the baby, even at this late stage in the pregnancy.
Needless to say, I was in shock and needed to get much more information before making any decisions.
From the very beginning of the pregnancy, my plan was to love and cherish these babies no matter how they came out and this news didn’t change my mind.
My OBGYN could not understand our decision and completely badgered me with his opinions, such as that having a sick sister would be a drag on our son’s life too, which was not helpful at all. We would have left this doctor behind,even if the high-risk pregnancy hadn’t required us to move on to a specialistAs her condition could require immediate surgery in the neonatal cardiology unit at Children’s Hospital, and the don’t do deliveries there, we were set up with an OB at Hollywood Presbyterian Hospital right across the street.
Luckily, she exhibited no problems at birth, and only stayed on the Cardiac NICU for a few days. Her heart was closely followed until she was five, when her cardiologist said she was out of the woods.
Further test confirmed the diagnosis of TSC, due to light spots on her skin and a tumor in the left parietal lobe of her brain. We also found out that she had PKD (Polycystic Kidney Disease) which happens in 1% of the cases of TSC, through a mutation on a neighboring gene. Lucky us! Two diseases for the price of one.
Without even seeing her, she diagnosed it immediately. She was having complex partial seizures. Since we had a medical team in place, it was easy getting her on medication quickly. Over the course of two years trying several medicines, we landed on one that has kept her a seizure-free for 6 years, which is pretty fortunate.
When the twins were born, I decided I was going to enjoy every possible moment with them because I knew things could get worse at any time.
Turned out that we were very lucky that she’s a mild-moderate case but that doesn’t stop the worryingMore and more treatments are coming out for this horrendous disease but there still is no cure, so we keep hoping she stays stable for as long as possible. Once we passed the 3year mark and knew she wasn’t autistic, I could really breathe a sigh of relief.
I had read once about a girl with mild TSC who died after having a gran mal seizure while out jogging. She hadn’t had any seizures for years and was very bright and athletic. Just awful! I can’t imagine what those parents must have gone through, but it made me more aware of how precious life is and that we really do need to focus on today and enjoying the little moments that we get with these kids.
My brother and mother came with me to the infusion center, and as we were driving home, I told them I felt like Chemo Sabi! We all had a good laugh and it eased the whole experience for me and them. I felt like my doctors were good and that I would have a horrendous year but then it would be gone and I could move on with my life.
As our kids are already medically savvy as a result of IVF and TSC conversations, my husband and I decided to be straightforward with them after getting some advice from friends who had been through the same thing. We told them all about the cancer and what the doctors were going to do to help Mommy. The twins were 5 at that time and it was very upsetting but they seemed to take it in stride. In fact, they got so used to me throwing up that it didn’t even phase them. On Halloween, I was really sick, couldn’t even make it to the bathroom. So, I’m throwing up in a trash can by my bed and my son walks up to me and says, “Can you tie this belt for my sword on me?” Mid-spew I say, “Um, can you go ask Daddy? I’m a little preoccupied right now.” I’ll never forget that. It was their new normal and they adjusted really well.
At the completion of a rough year of treatment, I figured I was done with cancer. I still had follow up appointments and I knew that if you make it to the 5year mark, the chance of it coming back was much lower.
Since my cancer is hormone positive (growing with exposure to estrogen), they put me on anti-hormonal medications like tamoxifen and others that I didn’t tolerate well. Chemo sent me into early menopause along with major hot flashes. My oncologist had me get a shot of Lupron every month to make sure I stayed in menopause. She suggested 5 years of that! My poor tush didn’t like those shots so I asked if they could remove my one remaining ovary (another long and fraught story) so I wouldn’t have to do the shot every month. I had that done along with my 2nd breast reconstruction surgery. The day before my birthday in 2016, the OBGYN who took out the ovary called to inform me that they found cancer cells in my ovary. There were no indications that it spread more than that, but now this meant the cancer was out in the bloodstream and capable of spreading to other organs, which is called Stage 4, or metastatic. Ironically, my oncologist put me on another regimen which included getting two shots in the tush every monthIf I hadn’t requested the removal of my ovary, we probably wouldn’t know about it spreading until it became too late.
I had horrendous migraines and extreme fatigue and nausea. We spent months trying to figure out how to get rid of my migraines which also feed off my estrogen levels. It wasn’t until I landed at a neurologist’s office that I was told that taking out my ovary was the cause of my chronic migraines. I have no idea why doctors don’t know these things from the get go but they were so concerned with the cancer and thinking about the possible side effects. Now I’m taking a bunch of medication for the migraines and getting botox shots every three months and they’re finally under control. A few more pills are helping with energy and brain fog. Small miracles.
The twins had a really hard time seeing me so sick over the last year. My daughter says that she hates my doctors because all they do is give me medicine that makes me sick. How do you explain side effects to a 7 year old? All I could say was that they are good doctors and they are trying to find the right combo for me.
One day, she was feeling really down about her illnesses and she was telling me how unfair it is that she has to take medication (for seizure control and to lower blood pressure on her kidney) and go to the hospital a lot. I told her that it definitely isn’t fair that she’s sick and there are people out there who don’t have her problems but they also don’t have all of her talents. That they aren’t as smart, funny and artistic as she is. Slowly, she began to smile. I knew I was on the right track so I continued with saying that they can’t climb like a monkey, that they aren’t awesome at karate, that they don’t understand puns and witty humor, like she does. Again, the smile grew and she started adding her own things. Whew! Sometimes you nail parenting moments like this and sometimes you don’t. I’m sure that I’m not done with this problem for good but at least it calmed her down this time.
Through infertility, genetic catastrophe, and cancer, I’ve never asked “Why me?”. My mind goes straight to “Why not me?”. It can (and does) happen to anyone. It’s not something I did wrong or my daughter did wrong. Bad things happen to people all the time. I find myself looking at people who are far worse off than me, which helps put everything in perspective. Like the woman who lost a leg in the Boston Marathon bombing. There was an iconic picture of her being carried away by a fireman and I couldn’t imagine going to do a marathon and then losing a leg. Later, I read how she made it through physical therapy and was doing well until she took a trip to Europe and died in a random car accident. If that doesn’t give you perspective, nothing will.
So, I keep hanging in there hoping that I will see these wonderful children grow up. Enjoying seeing them discover new things and introducing them to some of my favorite things. They are what keeps me going everyday, along with my husband who has been my rock throughout all of this. It’s not fair to him either but he doesn’t complain. We are all fighters in this family and we will continue to fight these obstacles the best way we know how. For me that usually means making jokes or finding the bright side in each and every obstacle. Whether that’s finding a free parking spot in Santa Monica when I have to go get a scan, or discovering how fast I can shower with no hair and having nothing to shave. Or realizing that I saved a butt load of money not needing haircuts and not needing hair products. There always is some silly bright side if you look hard enough. Even the mastectomy had a bright side! I got a free tummy tuck and boob lift!
Would you like to share your story with #OurTribe? Send submissions to email@example.com
Originally scheduled for February 17, 2018, this workshop is temporarily postponed. Stay tuned for new date!
#OurTribe's Sex Therapist Dr. Shannon Chavez is back!
At prior Sex themed workshops we learned about "mechanics"- the toys, how to get the ol' "juices flowing" etc. What wasn't addressed was "Ok, I've got all the lube in the world but I JUST DONT FEEL SEXY" ...until now!
For a million reasons it's super common to feel disconnected from your own body after treatment. Dr. Shannon will help us reconnect.
Rehab Specialists, Inc is hosting event.
11 am- 2 pm
415 N. Crescent Dr. Suite 130
Beverly Hills, CA 90210
Free parking in building.
Light refreshments will be served.
Price is $40. Light snacks will be served.
Please RSVP thru FB or firstname.lastname@example.org
Give YOURSELF a late Valentine's Day Gift and join us for a little Self Love!