A big thank you and a big YAY!

The Temple Terrace Fire Department hosted a spaghetti dinner to benefit some women in Temple Terrace with breast cancer in September, and they asked if they could include me in that.  Today, they came out to my house, with truck lights shining, and presented me with funds that were raised along with a shirt and TT Fire Dept afghan.  It  was an overwhelming and amazing thing for them to do, and I appreciate it more than I can begin to express.  It is a constant fight even when things are going well, but the prayers of everyone and the generosity of people such as the fire department & those that came to the spaghetti dinner definitely makes things a little, no, a lot easier.  Here are some pictures from them coming out today starting with me walking out to meet them to them asking to have a prayer and then a picture with the truck before they left.  Thanks to Shannon (& Kennedy)  for coming over and taking pictures for me!

The big YAY! is that I found out my bloodwork results today, and they are still in the NORMAL range == still NED!  We will be doing a PTscan before the year is out just to take another look & be cautious, but the tumor markers had actually dropped a little more, which is the way I like it!  Thank you for all the good thoughts and prayers.  I appreciate them so much!!!

Check, check, and ?

In the last 2 weeks, I have been able to check off 2 items on my "to do" list:  seeing Niagara Falls and swimming with dolphins.  Well, actually, Niagara Falls helped check an unwritten one off as well in helping me see leaves changed.

I went to Niagara Falls during FC's fall break, and it was beautiful.  It was especially nice to get somewhere with colder weather than we've been having in Florida.  I stayed on the Canada side, and it was the weekend before Maid of the Mist and some of the other attractions closed for the winter.  That made for very short to no lines which helped me get to do everything that I wanted.  I loved the Whirlpool Aero Car  and the Journey Behind the Falls for such amazing views that they gave.   Here are a few pictures from that trip

The swim with the dolphins was done at Discovery Cove, and I got the opportunity to do that with Josie, my birthday twin.  It was amazing, and well worth every penny, especially since we got a pretty sweet Florida resident deal that includes a Sea World pass until the end of January.   Such a fun experience! If it is on your "to do" list, I highly recommend Discovery Cove.

That brings me to the "?" of the title.  My 3 month oncologist visit is this morning.  I've been dreading it which is really pretty silly since we've done no tests beforehand.  Bloodwork will be done when I get there, but the tumor markers take a couple of days to process.  I'll leave today knowing my white blood cell count and that type of bloodwork info, but not really anything else as to whether I'm still NED or not. I'm not sure if we will go ahead and schedule a PTscan or wait to see what the tumor markers say.  Please keep me in your thoughts and prayers that the bloodwork will be good, but also, that I will be calm during the waiting time.  The waiting is truly one of the hardest parts about the process.  Thanks in advance!

MBC voices heard

Since I complained about the metastatic breast cancer community being in ways "ignored" in my last post, I felt it was important to praise a new group that was announced yesterday.  The Metastatic Breast Cancer Alliance, http://www.mbcalliance.org, was just formed.   "The Metastatic Breast Cancer Alliance aims to unify the efforts of its members and to increase awareness and education while advancing research and policy – efforts for metastatic breast cancer that have the potential to extend life, enhance quality of life and ultimately find a cure (http://www.mbcalliance.org/docs/MBCA_Press_Release_10_10_2013.pdf).  

Details are not prevalent on the site, yet, but they do have an initial goal of conducting a " Landmark Analysis to assess gaps, duplication and opportunities in the field to gain consensus on a path forward to addressing the unique needs of those living with metastatic breast cancer"(http://www.mbcalliance.org/docs/MBCA_Press_Release_10_10_2013.pdf) with a projected release date for the information in early 2014.   Here is the video that they released which I thought was extremely well done:  http://www.youtube.com/watch?v=NyTAf3niEO0&feature=youtu.be.

 It is just nice to know that the voices of many with MBC have been heard, and this is a wonderful starting place.   It was interesting though to see the responses that have been posted on some of the web pages or facebook links to the information. The Komen foundation has been criticized by some people for not doing enough for MBC, the type that Susan G. Komen passed away from.  Their facebook page announced their participation in the alliance by giving some of the real stats about the percent of early stagers that will become metastatic.  The response by many was that the post had ruined their day and was insensitive; they didn't need to read that.  This was such a classic example of what occurs in so many ways for those with mets, and it just emphasized to me how much this type of group is needed.  Of course, no one wants to hear those facts, but having lived being completely blindsided by it, education of that possibility is needed.  So, thank you to the Susan G. Komen Foundation, Metastatic Breast Cancer Network, Avon Foundation for Women, Breastcancer.org, Living Beyond Breast Cancer, and the other 10 organizations for taking on the challenge so that "together we are stronger than the disease."

The elephant in the month of pink: Metastatic Breast Cancer

There is one, big elephant sitting in the middle of October, and it definitely is not pink. Metastatic Breast Cancer (MBC) is when the cancer metastasizes and spreads to other organs and parts of the body.   For those that get breast cancer, 30% will become metastatic regardless of initial stage.  6-10% of all patients are stage IV or metastatic from the beginning.  I fell into that category, though we didn't know it at the start.  Though, patients who have early stage cancers are often told that they are "cured" at the 5 year mark, breast cancer can return/ become metastatic anytime after an initial diagnosis, and I have met women that had it return 10, 15, or even 20 years later.   This can be the case regardless of how early the cancer was found and the treatments or follow-up that result.  Early detection is not a cure! But early detection can be helpful in trying to stop the cancer from spreading.  Still, there are many people who did "everything right", and their cancer metastasized.

Breast cancer only becomes terminal or fatal when it metastasizes and spreads to other parts of the body. Only 2- 5% of all breast cancer research money is spent on researching metastatic breast cancer; yet, it is the only kind that is fatal.  A metastatic breast cancer patient will be in treatment for the rest of her, or his,  life.  Of course, all research benefits the MBC patient in ways by providing more types of drugs to prolong life, but shouldn't we be looking for ways to stop the metastasis and it's continued growth in at least equal numbers to the percentage of patients who will have the disease?  In the US, there are 40,000 deaths per year from metastatic breast cancer.    Unfortunately, these numbers have not changed in the past few decades though awareness of the disease has definitely increased.  This is very sad to me, and I am thankful that there are organizations like metavivor.org who are striving for equality with campaigns such as 30% for the 30%.

 Oftentimes, patients with MBC feel secluded even in breast cancer support groups and/or organizations because they are "what everyone is afraid of becoming." (I have been very lucky to connect with women who weren't scared off by my stage 4ness, but I have still faced this as well in some situations.)  We are rarely featured on any of the "pink" ads, most likely for the same reason.   Being a survivor takes on a different meaning for me as MBC patient, and this video is a good example of the many ways that people feel about it:   What does the word survivor really mean for the metastatic breast cancer patient?  Of course, as all of my trips have shown, I much prefer "living" with my diagnosis, but there are a lot of different components that go into that as well as shown in this video: How do you live with metastatic breast cancer?

I have very mixed feelings about all of the October pink.  Every time I see something pink, it reminds me of what I am dealing with, and sometimes I just want to forget it.   There are great organizations  that do wonderful things to help people in their communities, provide services for people who can't afford it, and research.  I am so thankful for those organizations and businesses that do those things and that show exactly who and/ or what the money is going for if you buy their product or service; I'm also very thankful that there are organizations that help individuals in their community because cancer brings stresses in so many ways.   I'm just not so fond of the many groups that seem to be capitalizing on a good, pull at the heartstrings marketing campaign, but you can't find where the money goes, etc.

 I know there are people out there who are battling, or have family battling other diseases, who would say "be thankful, at least people are attempting to raise money, our disease doesn't get funds like breast cancer".  I understand that, and I wish that every disease would get the funding that it needs. I just also wish that  my disease, Metastatic Breast Cancer, would get the funds that people seem to think it does or actually be curable, as people seem to think it is.  You wouldn't believe the number of well-meaning people that say "well, you have a good cancer b/c it is curable now" or "well, but you just had breast cancer compared to.....", in part b/c that is what is often put out there through many of the marketing campaigns. I've even had those things said to me by nurses and doctors, though not my cancer ones.   I can guarantee you that when you are getting the news, going through treatments and scans regularly, and planning your life in only 3-6 month chunks from dr appointment to dr appointment because you've been told that you are at best "treatable not curable" that there is no good cancer.

 I also wish that people would  realize that campaigns such as No Bra Day, while possibly well-meaning,  can do a disservice and belittle what people battling the disease are actually going through, especially when "scheduled" on national metastatic breast cancer awareness day. If you've been diagnosed with MBC, you most likely don't care about "setting the tatas free" in support of breast cancer,  and care much more about hoping the cancer leaves your liver, lungs, bones, and/or brain (the 4 most common areas for breast cancer metastasis).   In 2009, the Senate and Congress made resolutions that October 13th of each year would be National Metastatic Breast Cancer Awareness Day: http://mbcn.org/developing-awareness/category/house-resolution-senate-resolution/.  I hope that you will take a moment to think about me and the many other  faces of metastatic breast cancer on October 13th rather than the latest facebook or internet fad related to breast cancer.

If you actually made it through all of that, thank you for reading my rant. I just needed to get that off my chest, both literally and figuratively, lol!  I am very thankful for the treatment I've received, and the fact that I am currently enjoying being NED.  What I wrote above is still the reality that I live, though,  and some of the many thoughts that go through my head.  I try to generally be upbeat and positive on here, as that is the focus that I try to have in all things in my life now, but every once in a while I just need to be a little more real.

Busy, busy!

The last few weeks have been very busy.  I had and still have 6 classes (2 on-campus and 4 online) going on, and so, I was frantically trying to get ahead with those to prepare for 2 more online courses that started this week. Whew! My calendar is getting a workout trying to keep everything straight for all of them.  Of course, it makes me stop and be thankful that I am worrying about juggling classes and not doctor appointments this year.   My next oncologist appointment is on Tuesday 10/29, but I am trying to not think about that too much yet.

I had to, or got to depending on which way you look at it, say goodbye to my trusty 2001 Civic last week.  It was a 2 door and very low to the ground, which was exacerbating my joint issues, and my right leg had begun hurting/going numb whenever I drove over 20 minutes.  That was definitely a problem when I have to drive 30 minutes to get to my HCC campus. With the age, health issues, and even car issues, it just seemed like making a change was the right thing to do. Thankfully, I was able to work out something with my home equity line to pay for it so that I have some flexibility in that. (I know it isn't necessarily the best way, but with my very unstable schedule, it will be helpful to be able to pay more or less depending on my work and medical situation.)  I never pictured myself as an SUV person, but I  LOVE how easy it is to get in and out of my "new to me" Rav4.

I did get to take a little break this weekend to spend some time in Orlando with my nephew Drew (and his parents).  They were able to pretty easily twist my arm to watch him in the hotel while they went to Halloween Horror Nights.  I hate haunted houses and that type of thing, but I love getting some Drew cuddles; so, it all worked out.  Plus, we were able to see one of my favorite groups, Sister Hazel, perform at Epcot. Bonus!!  Here are a few pictures from the weekend.