Greetings and Welcome to DivaCare!
Firstly – What the heck is DivaCare??
The idea for creating DivaCare came from my own, personal experience with breast cancer.
I am a Healthcare professional and my story begins a little over a year ago, in September 2015, when I was suddenly, unexpectedly, diagnosed with early stage breast cancer. Well, not totally unexpected- as I knew the moment I felt that lump that this was probably not great news. And so, my journey began.
Nobody is busier than a cancer patient – between first opinion, second opinion, preparing for surgery, talking about genetic testing, learning about the need to consider whether I wanted to have children in the future (really? My son was still I diapers), you get a lot of phone calls, from your cancer care team as well as friends and family. Many people want to talk to you, and many people care about you. And of course, it is your job as a cancer patient to calm everybody down, because everyone around you is besides themselves with worry and concern.
I decided to go with a lumpectomy, based on a discussion that I had with my wonderful surgeon, Dr. Andrea Barrio at Memorial Sloan Kettering Cancer Center. The procedure went great, left me looking pretty good if I may say so myself, and was done ambulatory, which means I was allowed to go home the same day. No big deal, you say? True! I was even getting a booklet with exercises to do, and a link to a video that demonstrated these exercises. Things continued to be quite busy, because there was the question as to how aggressive the tumor was (whoever invented the Oncotype testing, I love you. You saved me from receiving chemo!). And of course there was radiation, which kept me busy every day for 6 weeks straight.
After my treatments were done, things got suddenly very quiet … and I personally seemed to be doing “great”.
And I was!
I did not need chemo, radiation wasn’t so bad, my cancer was pretty early stage, things could have been a lot worse. But, I still noted that I was not totally back to my previous active lifestyle.
I had heaviness and mild swelling in my right arm, lots of roping in my axilla (that’s the weird scar tissue), and pain and restricted range of motion, and I wasn’t sure just how much I could do with that arm; I just knew that yoga and lifting weights were out of the question. I know that because I tried going back to these activities when I thought I should be ready already. After all, it had been 8 months after my surgery, but instead of being my previous, fit self, I ended up with lymphedema that got superinfected, buying me a two day inpatient stay for near-sepsis at MSK downtown NYC.
From this little incident, I learned 2 things:
- Information is key. When I called my doctor’s office and told the nurse that I was experiencing redness and swelling in my arm and thought it might be infected, I was told to come in the next day. That would have been bad, as my infection progressed rapidly within a few hours, and I thought “ What if I wasn’t a medical professional and had listened to her ! what would have happened ?”
Since an infection tends to make lymphedema A LOT worse, it is pretty important to detect it early and to know when you should call your doctor.
- I really had no clue as to how to get back to my old life. I used to have a pretty good routine going with regular trips to the gym, some lifting, and even, yes, the very occasional climbing. And I had no idea how to gradually, progressively and SAFELY get back to that regimen. Could it be never?
So, at this point, I should probably share with you that I am a Physician working at a New York based Rehabilitation Hospital specializing in Stroke Rehab. As a trained Neurologist I encourage my therapists and patients to do their “homework” on a daily, and even more frequent, basis between sessions to regain function….. here I was, barely adhering to my stretching program, not knowing what to do or how to progress functionally with my rehab, or for that “make sense of it all”
- Is restricted range of motion normal?
- Stretch more, or will this aggravate my swelling and pain?
- Should I lift weights, even with slight swelling afterwards?
- Is Yoga a good thing ? (it is generally, but planks are really bad for lymphatic flow. I did not know that. I did lots of planks before landing in the hospital).
I tried to look up guided, progressive exercises for patients with lymphedema, and found…nothing, really. That was particularly frustrating as all the new research studies show that exercise after breast cancer is actually good and can prevent lymphedema. So it was good to get moving, but how? I ended up referring myself to one of our Burke Physical Therapists, the beautiful and capable Carolyn Storms, who specializes in lymphedema, and, lo and behold, she completely broke apart my scar tissue in a manner that I would have never dared to apply myself, and helped me with strengthening exercises that I could gradually increase. I now have full range of motion, and zero swelling. She also answered a whole group of nagging questions and reduced my general anxiety, and I thought “Hey, what if every breast cancer survivor had a resource they could turn to for their rehabilitation needs after being treated for breast cancer?”
This is how DivaCare was conceived.
At DivaCare, we aim to provide information about breast cancer treatments and their possible complications, with a focus on specific conditions like lymphedema. Our Goal is to bridge the gap between merely surviving the whole cancer ordeal, and helping women get back to their previous, active, vibrant lifestyle. We aim to create a community where survivors can connect with each other, but also be connected to local rehabilitation specialists, who focus on breast cancer treatment. There is a LOT of stuff out there that can help women regain activity after breast cancer surgery, and we hope to be a centralized platform where this information can be found. Our mobile app is in the works, and will provide a simple screening tool for symptoms that can help encourage women to seek the help of a Physical Therapist when it seems indicated (it’s probably always indicated), and also some guided, progressive exercises.
To start off, we will provide biweekly blogs written by experts in the field. We sincerely hope that you will find what DivaCare has to offer useful and informative, and look forward to accompanying you on your journey towards recovery from breast cancer.