Monday, October 26, 2015

Still normal... & an interesting research study

Still normal....or at least my tumor markers are.  I felt such a sense of relief when I heard that everything was still in the normal range!  It makes the upcoming PTscan so much easier, but I will admit that there is a part of me that is conflicted to get good news when so many of my friends with cancer are going through difficult times.  I know they would be the first to yell at me & tell me to enjoy it while I can, though; so, that is what I will do.  At least my credit card can relax as there will be no need for retail therapy until the next waiting period..... I forgot to list that one as a waiting side effect previously, but that is another big one for me. At least this time I was able to channel it into buying early Christmas gifts, lol.

I did read some encouraging research yesterday, but I thought posting about it yesterday would possibly jinx me.   The study posted here -     references the research study published here --    . The normal 5 year survival rate for metastatic breast cancer is around 10%. In this study, it was actually 24%, but for those who reached NED status, it actually was 78%.  That is a HUGE difference, and makes me very thankful for this time that I've fallen into the NED category.   Also, the study confirms that some of the decisions that I made were associated with an increased likelihood of NED status which just helps me to feel good about making those decisions.  I went more aggressive than is often done for metastatic, and it is nice to know that there is some research to back that up as being beneficial.  This was a small study of only 570 patients, but it is still encouraging.

Anyway, just wanted to keep you updated and share what I thought was interesting. Hope you have a good week!

Sunday, October 25, 2015

Waiting is the hardest part.....

This past Friday, I had my three month oncologist visit and blood work; so, I am now waiting on the results of my tumor markers, which I won't have until Monday or Tuesday afternoon.  In ways, having the wait be over the weekend is better because I know the results won't come out until the business days which keeps me from obsessively checking my online medical chart like I would when I'd do the tests on Tuesdays, but at the same time, I don't have the structure of work and routine to keep me busy and my mind off of it.

Someone mentioned to me this weekend that they didn't know how I did the waiting, and I thought "you just don't have a choice".  It is a bit like that meme that often goes around on Facebook that you don't know how strong you are until being strong is the only choice you have.....that is the reality for anyone dealing with the waiting and the ups and downs of cancer. Like the Miranda Lambert song I normally "hide my crazy" during the waiting time period, but thought I'd fess up about some of it now as it might help someone else realize that it is perfectly normal.

The waiting after these 3 month visits or after a PTscans is incredibly hard, and how I handle each time is different.  Work is always a good escape for me; so, that provides good structure, but on the weekends when that isn't there to escape into......Generally, I do a lot of obsessively checking my online medical chart when it gets close to time that it would be there. I know that they are going to call me with the results, but I still do it anyway.  I tend to be pretty emotional during this timeframe, and I've learned that I need to talk to my close friends about it (some people I know are the exact opposite) so much so that my phone normally runs out of battery multiple times when it never does that any other time.  I can feel like a complete nervous wreck at times, and I often don't make too many plans for that weekend or only make plans with close friends so that if I can't handle doing something they'll understand.   Sometimes,  I want to do nothing but sleep. Other times like this weekend, it seems to have manifested in me being unable to sleep.  I was up last night until 4 AM. (I did end up sick with a stomach virus after church; so, that may have played into it without me realizing it.)

I work very hard to be as at peace as I can with everything through prayer, etc., but the worry is still there.   I  have many friends with cancer that I have met through work, church, Imerman's Angels, cancer forums, etc. and the thing I've discovered is that it is normal to be a wreck during this time of waiting and that's okay.  It took several of them telling me its okay for a while for it to sink in, but it finally did.  So, if you or someone you care about is going through any part of this process and dealing with the waiting , just know that its hard and it may not be a pretty process where the crazy is hidden but you will get through it.

If you ask me how I feel, I will tell you that I feel great, and that is the absolute truth.   Day to day, I feel really good (well, except for the whole stomach virus thing today), but you still worry.  I had blissfully forgotten about a lymph node that had lit up on my previous PTscan.  We are going to do another PTscan if insurance will allow it to check to see if that node is still lighting up. That node is in a place that would be very rare for it to be cancer especially since my cancer initially moved by blood. It also could not be felt; so, my oncologist really does not believe it is cancer related.   I'm not sure when that will get scheduled, but that will be more waiting. Thankfully, that one is only for a day usually.   Once the tumor markers come back, I will have a better idea of what to expect from that PTscan anyway.

So, I'm back to more waiting and sipping coke and/or gatorade and watching whatever is on the dvr.  Hopefully, I'll be able to avoid checking my online medical chart, but I will update whenever I know more from my tumor markers.

Wednesday, October 7, 2015

Metavivor Ribbon and How things are going

This is the ribbon created by Metavivor.  I've mentioned this group before, and they are a non-profit seeking to make a difference in regards to metastatic cancer research especially in the area of metastatic breast cancer.  Since it was October and pink is starting to cover everything, I thought it would be a good time to recognize this group and ribbon.  From their page, "METAvivor designed a base ribbon of green and teal to represent metastasis.  Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast."  They have invited other cancer communities to lay their own ribbons on this metastatic ribbon base.    With the many problems of pink-washing, I don't feel that the pink ribbon adequately represents me, but this ribbon does.  So, if you see this ribbon on my Facebook or car or worn by someone else in some other location, you will understand the meaning behind it, and why I might post this instead of just the standard pink ribbon.   

On to how things are going...

The last few weeks have been moving very quickly it seems.   I have settled into a groove with my jobs and being full-time at FC, and that is going very well.  Because one school ended, I am working about the same amount as I did before, just more of it is in person and working from an office outside of the house.  I had forgotten how much my body and personality really liked structure (it is amazing what you can get used to when you aren't as structured for 5 years), and I have been responding really well to it.  On the mornings I don't have as early of classes, I still get up at the same time and do my online class work, and so far, I rarely have to do any grading in the evenings following this plan.  While I'm busy, it is not a stressed out type of busy. (Though I do feel like typing that may jinx me on it, lol!)  

My next goal is to try to figure out how to get more exercise in daily.  I am going to be walking a Disney 10k with friends in February, and I don't want to hold them back. (They are running the 1/2 marathon the next day; so, the walking is holding them back, but I don't want to really hold them back).  So, I'm working on figuring out how to add that in, and to try to do the coach to 5k and then 10k programs, even if just walking, to try to get my time up as fast as possible. 

Healthwise -- I've been feeling really good. My next 3 month follow-up is on October 23rd. So, I will have information sometime the following week about markers and everything.  Hopefully, everything will still be good, but I always appreciate prayers regarding that.  

Hope everyone is having a wonderful beginning of fall!