Thursday, January 16, 2014

18 months, and why I blog

Tomorrow is 18 months since I was diagnosed.  In some ways, it feels like a lifetime ago, but in others, it feels like time has flown.   Many people may be like "what's the big deal about 18 months?".  Well, for me, it is a big milestone.  When I accidentally stumbled upon those stats that my oncologist said to never look up, I discovered that the average lifespan is 18 months for those diagnosed with stage 4 breast cancer from the start.  I've alternately regretted and been happy that I saw those stats.  I'm a competitive enough person that knowing about & trying to beat some of those stats pushes me forward daily along with ensuring that I treasure each day upon the path to each stat.

I know that stats are just numbers, and they may be especially wrong in a case like mine. A very odd thing about cancer stats is that they only keep track of what someone is at initial diagnosis and then indicate whether they pass from metastasized cancer or not upon their death.  They are then still classified in the timeline stats with that initial staging.  Though I was truly stage 4 from the beginning, they initially thought I was stage 1, and most, if not all, of the initial material sent to organizations such as American Cancer Society that track those numbers stated stage 1.  We don't know for sure whether that was ever corrected to indicate stage 4 or not.  Is there a whole other category of people out there like me that they aren't really keeping track of?  My connection with people on one of the breast cancer forums seems to imply that there could be, but who knows?

I am just incredibly happy to hit this milestone with my health being as good as it has been recently. My stamina is still increasing and surprising me weekly.   I do go on Tuesday of next week to get tumor markers checked, and as always, I appreciate your thoughts and prayers.

Something that has been on my mind…….
Blogging and tweeting by cancer patients has been been all over the news in the last week after a blog post by Emma  Keller in the Guardian, which has since been removed, and a subsequent article by her husband, Bill Keller in the New York Times.  In these pieces, the questions are raised about whether a particular cancer patient goes too far in her tweeting of information about her cancer  along with whether this cancer patient who is a young mother should just "go gently" like their elderly father/father-in-law rather than using a lot of health care money for treatments.  This is a very thumbnail sketch of how I perceived the pieces, and many others have written commentaries both in support and criticism of the Kellers.   I mention it because the uproar over these pieces have really been on my mind and made me think about why I blog.

1) I blog because I want to share information with my family and friends quickly and easily.  It is so much easier to type it here once than to have to repeat it numerous times.  This way I can also choose how much and what I want to share at any given time.
2) It is therapeutic for me to to share the information.  I am a talker, (I know you're shocked!) and talking things through, or writing them, helps me to process and come to terms with them.   I may have shared way more than some people would have felt comfortable doing themselves, and I understand that what I am doing is not for everyone.  That is okay, but it IS the best way for me to deal with it.  If getting this type of diagnosis does anything, it should allow the person to be free to handle the situation in the way that works best for them.

3) Hopefully, it will educate and help people.  I still remember when the word cancer was like a dirty word that you whispered.  I think that things are more open about it now, but it can still have that type of feeling associated with it.  I want people to understand that there can be "living" with this type of diagnosis, and to understand that there are many options available.  Each cancer, like each person, is individual.

A lot of people don't like the terminology of "fighting or battling" cancer because it could imply that someone failed if they "lose" their fight.  I've heard other terms such as "thriving", but the idea of it being a fight has not ever really bothered me.  Right now, we are lucky that we are able to fight with just a little sword of my anti-hormonals, and the enemy is not really on the horizon, or at least I hope that it isn't.  At some point, we may have to pull out the big guns again and/or possibly decide the time is right to lay them down.  I hope that at any of those points people will understood that I have reached those decisions with great input from my doctors, family, and friends, and that no one will feel that my decisions or blogs need to be scrutinized in the papers as happened in those articles.   Until they tell me otherwise, I will follow what the poem by Dylan Thomas that  Mr. Keller misquoted actually says which is: "Do not go gentle into that good night….rage, rage, against the dying of the light".  Yes, I know that may seem at first I in contrast with my "being still" focus, but I don't think it really is.

Side note: Since the poem and wind ensemble work have been in my head since I read those articles, I have to share  a link to a recording of the piece: .  (Yes, I am that band geek where the band work came to mind before the actual poem did)

I hope that I never offend people by what I write, and I hope that you will always understand that it is being done for the reasons above.  The support  that I've gotten from people has really been a blessing to me.

1 comment:

  1. Your posts have been very encouraging and informative. It has been helpful for those who love you. It has given us just a glimpse into what you are going through and helped us with our prayers for you. NEVER STOP WRITING Nancy! Love you