So my foobs are doing very well. I have another appointment with The Boob Whisperer on March 6th and I believe he will then schedule the procedure to remove that little extra skin on the right side which looks like a little dog ear. What’s frustrating is my foobs are still sore and numb. I also get phantom itches which I scratch, and which I can’t feel, and the itch is still there. Is this some kind of weird phantom itch thing? The itches of ghost boobs past?
If you watch TV or go the movies with any regularity you will inevitably come across a story line about cancer. I’ve been watching This is Us on NBC and if you know that show you’ve seen the story line about Randall’s biological father having stage four cancer. People having cancer on TV and in movies have always made me uncomfortable. I still ugly cry when I see Debra Winger in her hospital bed saying goodbye to her kids. But I could still look at scenes like that and tell myself “it’s just a movie” and let it go. You can’t really imagine yourself in their shoes. You’re part of the Not Me group. After my breast cancer diagnosis, every cancer plot smacks me upside the head like “wake up THIS IS YOU.” And I start to freak because I haven’t done hardly anything on my bucket list. I can’t even recall everything on my bucket list. Here are a few bucket items in no particular order:
- Be thin
- Visit Australia
- Write a book
- Be an extra on The Walking Dead (although I probably need to achieve #1 first because I’ve not seen any chubby zombies)
- Be a grandmother
- Buy a house near the beach
- Convince my husband to get another dog (our sweet cattle dog Sammy crossed the Rainbow Bridge last January)
- See #5 and #7
If nothing else, number 5 is so very important. I get verklempt when I think about how fast Lili is growing up and at the same time, every year that passes is another year I’ve made it through.
Yesterday on Valentine’s Day I had my four month oncologist appointment. I always have medical stuff on notable dates. First oncologist appointment on my wedding anniversary, first round of chemo on my 50th birthday. Thankfully my CBC panel came back normal so still NED (no evidence of disease). We talked about the Tamoxifen I’m taking and since he also checked my estrogen levels he was able to confirm I’m in full blown menopause. This means I switch from Tamoxifen to an aromatase inhibitor, Letrozole starting Monday. I told him about my achy joints and he told me to stretch and exercise which seems to be pretty much the cure for all of a body’s ills. I know I’m getting old which means my bones are more creaky but I creak and crack with every move I make. How did I get to be 50? When did this happen? I’m pretty sure a couple years ago I was 30. At least it seems that way. I know some of the joint pain is attributable to the Tamoxifen, but still.
I’ve mentioned I belong to some closed Facebook groups of ladies in various stages of their journeys with breast cancer. The largest one was started last summer/fall by Lisa Schwartz, MD, a radiation oncologist in California. She infrequently posted brief videos of different topics to the page but didn’t really interact with the group other than to advertise her on-line community called the Breast Cancer Collective which was $29 per month to join. I have no idea if anyone signed up for that but by all accounts it just looked like it offered information anyone with access to google could obtain. Meanwhile, her Facebook group blew up to over 7,000 women across the world. It was pretty much the most positive experience I’ve ever had on social media. Women from all walks of life and all corners of the world were offering strength, support, love and compassion to each other as we were all in the same fucked up boat, so to speak. About two weeks ago, Dr. Lisa posted that the group had grown so large it was taking more work than she anticipated and she was going to start charging $5 per month per person effective the following week. Now $5 per month for some people is a lot. I could have afforded it but that’s not the point. It’s the principle. I belong to other Facebook groups with high membership that are free. After a few women posted (respectfully) they were leaving the group Dr. Lisa shut it down right then and there and went totally dark. 7,000 women suddenly out in the cold without a way to contact each other. Luckily the members’ names were still visible for a short period afterward and some awesome ladies started two new groups by contacting members of the old group, which have now grown to 330 and 270 members, respectively. It appears Dr. Lisa reopened the original group and it has 73 members (who I guess don’t mind paying $5/month and also subsidizing a physician’s salary with their breast cancer). My point is, this is about the shittiest thing I’ve seen in a long time. My theory, for what it’s worth is that she hoped women in the Facebook group would join her Breast Cancer Collective Community for $29 per month. I doubt anyone did because as I said, the value of the product she offered was not commensurate with the cost. So then she decides to charge her potential cash cow of 7,000 women, $5 per month. Even if she only gets 1,000 ladies to agree to pay, she’s then making $5K per month just for moderating a Facebook group of women dealing with breast cancer. I realize this is probably perfectly legal but is it ethical? And to shut it down without warning, knowing thousands of breast cancer survivors who’d built friendships would probably lose touch with one another? I’m so thankful I was able to stay in touch and join the new groups but I wonder about the thousands of others who have no idea what happened or how to reconnect. Shame on you Dr. Lisa, and I use therm “Dr.” loosely.
In happier news I authored a two part piece for a site called “I’m Taking Charge” and you can read it here:
I’ve been trying for a while to get back to normal but that normal is pretty much gone forever. That ship sailed and it’s not coming back. I am done with treatment except for taking daily Tamoxifen which inhibits my body from producing estrogen. So why can’t I just snap out of it?
I long for the days when my worries and stress didn’t come from cancer and its lasting physical and mental side effects. I still have numerous aches and pains, probably from the Tamoxifen and some residual soreness from my mastectomy and reconstruction surgeries. I have to admit too that I have lingering chemo fog, which affects my short term memory. Missing turns while driving. Thinking a thought and before that thought is even fully formed in my brain, it has flown the coop. This is actually only the tip of the iceberg. I am afflicted with many of these lingering effects.
When I recovered from meningitis in 2004 within the first year after diagnosis I had pretty much gotten back to normal, albeit with one left totally blind weird wandering eye. The chances of meningitis coming back were very rare. When I was recovering I was frightened because I nearly died, but after a year I felt like I was getting back to normal and there wasn’t a black cloud of doom following me around like I sometimes feel there is now. But I also had a baby to take care of and you moms know that when you have a baby it consumes all your attention. It’s a nice distraction from worrying about yourself.
Flash forward eleven years and I’m diagnosed with Stage III breast cancer. I finished chemotherapy and radiation by November that same year. I didn’t have a baby or anything else really to pour my now limited amount of energy into. I had to actually face this new version of me. Mostly I like her because she can be bad-ass. She fights for herself and others. She appreciates so many of the little things now. She doesn’t take life for granted. She’s made positive changes in her life. But she doubts. Doubts her ability to beat cancer. Doubts her ability to put cancer in the back seat. I would say Cancer has at least moved from the driver’s seat to the passenger’s but it is my hope that it can be moved to the back seat and eventually to like a trailer that will one day be unhitched. A survivor I know added to her FB profile under work history, Works at “beating breast cancer” and I thought fuck yeah-it IS a job! And a full time one at that. So I added that to mine. You see there is no cure for invasive breast cancer. It can be treated but there is no guarantee. While chemotherapy can work wonders, it cannot guarantee a cancer-free future. Neither can radiation. Even a patient who is “100% clinically responsive” cannot be assured that the cancer is gone. Microscopic cells can remain. Nobody can tell who has been cured and who hasn’t because breast cancer can return at any time, be it two or twenty years later. I guess you can say you were cured when you die many years later from something else. When breast cancer returns, it usually shows up somewhere else, i.e. bones, lungs, liver, brain, etc. If this happens it’s not bone cancer or lung cancer. It’s metastatic breast cancer, or as we pink warriors say “bone mets” or “brain mets.” It’s also Stage IV. Since I will never be considered “cured” my oncologist says the term he and his colleagues use is “NED” no evidence of disease. I hope there is no evidence of disease for the rest of my life, which I further hope will be a long time from now, after I’ve found my purpose, after I’ve become a grandmother.