Have you ever gone to a party that was supposed to be for you, but it felt like you were alone and no one was actually paying any attention to you? It is not a good feeling, but that is what it feels like to have metastatic breast cancer in Pinktober. Everywhere I go, I am surrounded by pink reminders whether it is Panera with pink bagels, Tijuana Flats with pink chips, hockey or football games with pink pom poms or other things and any type of store trying to sell some pink item. Honestly, there have been a few times when I have felt physically ill seeing all of the pink. Part of the reason for that ill feeling is that it is a constant reminder of my breast cancer, and that can be very hard as you sometimes just want to go out and forget your daily troubles. The other part is that all of this pink is in the name of awareness and finding it early = cure. Now, I believe that most organizations are trying to do the right thing and have the best intentions possible. I also know that other cancers would love to get this much attention, and I agree that they should as well.
The problem is that many of the things being sold have little to no money actually going to breast cancer awareness or research and/or are sometimes even have chemicals that could possibly cause cancer. Panera's bagels support Moffitt and Tijuana Flats supports a breast cancer research organization. If I were to buy pink things it would be this type where I knew exactly where the money was going. Unfortunately, many breast cancer survivors of any stage feel like it has become commercialized and/or sexualized such as save the tatas campaigns when it should be save the mother, wife, sister, friend, etc. Those with metastatic cancer don't fit the "found early now cured" mantra of the awareness organizations and are often left out of survivor events, support groups, etc., but they are the epitome of the women that we should be trying to help.
The other hard part of this month is that everything is for awareness and finding it early = cure, but the reality is that it just isn't true. For me, we thought mine was found early as stage 1 in the breast to only find out that it had traveled even earlier to the liver, and I was really stage IV. Early detection is not a cure. The stats still say that 30% of women with early stage cancers will recur with metastasis, and 6% of breast cancers are stage IV (metastatic) from the beginning. Those numbers haven't changed, and an estimated 40,000 women die each year from metastatic breast cancer (the only kind that kills). Yet, most people will say due to the pink campaign that breast cancer can be cured. It can't! There is no cure, only ways of fighting it to hopefully extend life. But there is a problem even there, only 2-5% of breast cancer research funds are actually spent on metastatic breast cancer -- the only type that kills. (I know I've said that a couple of times, but I just can't stress that enough) Metavivor is trying to change that so that at least 30% of funds are spent on the type of research that will help the 30% with metastatic breast cancer. More awareness needs to be made of these things.
We get one day in the month of pink -- October 13th as metastatic breast cancer day. If we really care about a cure, then stage IV needs more!
Thanks for reading what is apparently my yearly Pinktober post. Now, for what is going on with me:
My last scan at the end of July showed that I was basically stable (lymph nodes same size but glowing brighter) which was good but also a little worrying as my tumor markers had risen 3 months in a row. We took a month off from checking the markers after the scan, and I was very nervous before my last appointment. My doctor said that if the markers were up again then we'd scan again to see if a change of treatment was needed. The September markers thankfully had come back down a bit which was a huge relief; so, the scan was put off for a while longer. I did go ahead and find out what they believe the next step will be if/when we do have to change medications as it really helps me to know that a plan of attack exists. Knowledge is power for me. My next tumor markers will be run when I get my monthly shots this coming Tuesday. So, I'd love prayers that the treatment is working, and the tumor markers will keep decreasing.
October is very busy with concerts and recitals for me. I am performing a joint recital (clarinet & piano) with Adam Booher at Florida College on Monday 10/30 at 7:30 pm in Puckett Auditorium. I'd love to see friendly faces in the audience! Along with that, I will also be playing with the FC Wind Ensemble this coming Monday ,10/16, and Florida Wind Band on 10/22. It is always fun to get to play with groups like this, but with all of the rehearsals it makes for a busy next few weeks. So, I'm especially thankful for the couple of days of Fall Break next week. That's my life in a nutshell! Hope your October is going well!
