Wednesday was the monthly Linked by Pink meeting, and I arranged our schedule so I could make it. I’m feeling a little frustrated with having to curtail some of my activities because of treatment, and I wanted to be around others who would understand that fact without even having to discuss it.
Amanda from Keystone Rehabilitation was our special speaker. She was in charge of my rehab after my mastectomy and is so great. She talked about lymphedema and how to prevent it, or at least minimize any problems with swelling. Lymphedema is definitely one of those diseases that your outcome improves the earlier you stop the symptoms. You really need to nip it in the bud.
One of the exercises Amanda demonstrated to me when I was doing PT was lymphatic massage. I have continued to do it twice a day (and three times a day while I was doing radiation) – in the morning and evening. I find it easiest to do when I’m changing, because you need to slide your hand along your torso and chest, and a bra just gets in the way. I keep hoping I can stop doing the massage, but every time I cut back, I can feel the area where my shoulder-blade hits my ribs start to build up with fluid. It’s not too bad, and I’m going to keep it that way so I don’t have to get a pump. Then you have to strap on a compression vest and sit for an hour while it squeezes you every which way, looking something like this:
I will bring one of my lymphedema sleeves with me on our trip, though, since I’ve been told that traveling is prime time for some swelling to happen. Since you’re sitting around a lot and not using your arm as much, the muscles aren’t pushing out the fluid like usual, and it can build up.
All in all it was a useful meeting!
I got lucky this month that the Linked by Pink meeting was the night before chemo instead of the week after (especially since that Wednesday after chemo is a rough day). It was out in Fairview this time, which is a bit of a drive, but totally worth it since it was at a tea shop. Turns out, one of ladies in Linked by Pink owns a tea shop – Miss Bridget’s Spot of Tea! I didn’t even know there was a tea shop in the area, let alone one run by a friend.
This is the tea awaiting you at Miss Bridget’s – so many choices to smell and taste!
I totally love tea so I was sure to bring my wallet with me so I could come home with some new tea varieties. I was not disappointed. I picked up two green teas – a Balinese Rainbow Jasmine because I like jasmine tea and was out at home and then Genmaicha Yamasaki, which has toasted rice in it. I’ve seen it before and wasn’t sure about the flavor, but decided to try a bit of it. I also grabbed a fruit tisane (Lady Hannah’s) for the kids.
I was also there for the support of the other Linked by Pink women (although the warm cups of tea didn’t hurt). Since I’m moving on to the next stage of treatment, it was time for me to ask lots of questions again. I was mostly interested in what the ladies did if they had a mastectomy. Did you have reconstruction? What kind? How did it work? Do you have a prosthetic? What’s it like? I’m just trying to figure out my options and get an idea of how it all works in real life, versus what the surgeon might say to me. I am in a bit of a holding pattern until I find out what the surgeon plans, but I want to be able to start thinking about options. Needless to say, there’s lots of thoughts floating through my head. We’ll see what happens soon enough, I know.
One help in getting me through diagnosis and chemo has been the chance to talk to other women with breast cancer who have been through what I’m going through now. Surprisingly to me, there’s actually an organization in Erie that is dedicated to young women (45 and under) who have been diagnosed with breast cancer called Linked by Pink. I managed to look up the group before I started chemo and noticed one of their social meetings was planned the day before chemo. I was a little nervous going into the group cold, but I was so glad I did since I was able to get some “in the trenches” tips and support before I even started my treatment.
Every month, they plan a meeting. At the moment, they schedule two social gatherings for every one support meeting. Last week was a support meeting, so there was a little more structure to the meeting than the social meetings that happen at a bar or restaurant. I was happy to see a few people I recognized from the first event I went to, so I had someone to sit by and see how they were doing. We spent the first bit of time just chatting, but went around the room and introduced ourselves and when we were diagnosed. I talked a little longer than most of the other women there since I’m just starting treatment and I’m new to the group.
The other news that took up much of the time was The Living Pink Pageant. One of our members (Angela) participated in this when she lived in Seattle, and she’s managed to get it started here in Erie this year.
There are five contestants competing to raise the most money for Linked by Pink. Many local organizations are donating materials for the competition (dresses, flowers, and the like) and we even get two drag queens to keep the energy up and move the contestants through the parts of the pageant. Sadly for me, it’s two days after my next round of chemo, so I know I won’t have the energy to go, but it sounds like a lot of fun. Maybe next year, right?
Once again, I was really happy to go and talk to other women who have been where I am now. The conversations are much different since you can talk about things like where was your port located on your chest, or how bad did your Neulasta shots feel. It’s definitely something to push myself to go to, if I at all have the energy. The next social get together is October 1st and will be held at Claytopia. We’ll see if I make it since it will be less than a week after chemo and I’ll still be in the depths of side effects. Linked by Pink does keep a calendar of upcoming events if you know someone who would benefit from joining us.