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! 

Sunday, August 30, 2015

All things work together.....

Well, in the last blog post, I was telling you about some losses in the job front and that my insurance coverage would end with my current company as of December 31st.  I appreciate all of your thoughts and prayers on both fronts.

In a strange twist, both have been taken care for at least this school year in the last two weeks. A full time music teacher at Florida College left to pursue an opportunity in the corporate world, and because of the short timespan before school began, it was decided to divide that course load between the other teachers in the department.  This put me over the number of hours for adjunct, and they hired me as interim full-time for this school year.  The position will be officially advertised, etc. over the course of this school year, and I plan to apply for it.  In the meantime, for at least this school year, I will have benefits such as health insurance.  I am very excited for this opportunity as I get to teach all  of my loves - music education classes and supervising interns, music literature class, along with teaching instruments such as piano and woodwinds.  If you'd asked me a few years ago what would have been my dream job, this would have basically been it.  Plus, I get to teach in an environment like FC where I can go to chapel every day to learn and renew myself daily as well.  

This is a little bit different for me as I haven't gone into a job every day in the last 5 years since I worked from home, but I think it is actually a good change.  I'm just having to get back used to the alarm clock like every other teacher after the summer, lol.
My prayer would be that when the job did officially advertise and interview that I would get hired to continue teaching there on a more permanent full-time basis in the future. If you think of it, I'd appreciate your prayers for this as well.

Friday, July 3, 2015

The Good, The Bad, and the Ugly

I have had the wonderful opportunity this summer to go with a group to France and Italy, and then on my own with timeshare to Hawaii.  These trips were truly amazing, and I feel so blessed to have been able to take them.  I've posted a few of my favorite pictures from each below:

Also, in the good, or possibly great, category is that I am coming up on 3 years since diagnosis.  Since I am feeling and doing so well, that is a great milestone to pass! The actual timeframe of the cancerversary is always a little bit hard, but thankfully, I'll be with family again which always helps.

The Bad
In the not so great category is the fact that I'm losing one of the schools that I've worked with for four years.  They've changed their credentialing, and unfortunately, the credentials I have do not have enough graduate level music history to meet their new requirements.  So, this summer term will be the last that I work for them.   Since, I'd already had a little bit of ebb in some of my other positions, it makes this a bit harder especially since this school was about 1/4th of my total pay.   Also, I didn't find out until after I'd gotten home from Hawaii; so, I might have made some other choices on the trip(s) if I'd known,  but that wasn't possible after the fact.

I've been putting out a lot of resumes, and I'm hoping that something will come up to take up the slack from this.  I'd appreciate any prayers that my work situation would work out for the best, and that something good will come of all of this.

The Ugly
A couple of days after finding out about the school above, I got a letter from my health insurance company that they would no longer be offering individual and family health insurance after this December.  This is the company that I've been with throughout my time with cancer, and they have really been wonderful.  They've approved all of the tests and scans I've needed with no hassle.  The idea and task of finding a new insurance that will even just cover all of my doctors is very daunting.  Of course, it would be best if I could just find something full-time that would include insurance, which I'm searching for, but those opportunities in my field(s) are few and far between.   Otherwise, I really can't search for new insurance policies until November 1 when the marketplace re-opens.

I would really appreciate your thoughts & prayers on the health insurance front as well.  While you're at it though, please throw in some thanks for my relatively good health as we pass this 3 year cancerversary.    Hope everyone is having a good summer, and Happy 4th!

Wednesday, April 29, 2015

Let's stay together

" 'Cause you make me feel so brand new, And I want to spend my life with you……oh let's…Let's stay together….."
 --  Well, according to the tumor markers, NED and I are staying together for a while longer!  The tumor markers were normal, and had actually dropped a little.  We are still going to do a PTscan because it has been 8 months since the last one, and my oncologist does not want to go more than 9 months without a scan.  I'm good with that though, and it sure is easier to go into a scan knowing that the numbers aren't showing anything yet.   I will have the scan once I'm back from the FC France & Italy trip later in May.  

A recent bone scan has shown that I have developed osteopenia which is a common side effect of the anti-hormonal cancer drug that I am on.  To avoid further problems, I will start taking Zometa infusions every 6 months (as long as insurance approves it).  This drug will help build the bones, and studies have actually shown that the changes can create an uninhabitable environment for bone mets, which I am happy for us to create.  The downside is that most people feel like they have the flu or like they did after chemo for a few days after the infusion.  Hopefully, the benefits will far outweigh the side effects.  We've scheduled my first infusion to happen at the same time as my port flush in June once I've finished my two big trips.  

So, while there are some changes, things are pretty positive right now, and I'll take it!  I appreciate any prayers offered previously, and would appreciate continued prayers for a good PT scan.  

Tuesday, April 14, 2015

Life's ebb and flow

It has been 3 months since I last posted; so, I thought it was time for an update. Healthwise, I have my oncology appointment next Friday, 4/24, to do tumor markers and other blood work.  It will take some time for results, and this feels like one that is a big deal since it will mark 2 years of being NED.  I'm already getting nervous which is ridiculous since it is still a week and a half away, but it just feels like a milestone.  Hopefully, I will begin a third year being able to say the same thing.   I'd really appreciate prayers for good results.

As I've mentioned before, I still take an anti-hormonal pill every day to help keep the cancer from returning.   Unfortunately, that pill seems to have raised my cholesterol, and then the pill to address that has ended up raising my blood sugar.  I was put on a medicine for that as well, and I will see tomorrow if that is helping my blood sugar or not.   It is kind of crazy to have to take more medicine to counteract side effects, but I'll do it to avoid the alternative.  The blood sugar medicine has actually been shown to reduce the risk of breast cancer recurrence; so, I'm hoping that it has some side benefits as well.

I'm still staying busy teaching 13 classes between 4 colleges this spring semester. Recently, though I've had a little more ebb than flow for future semesters.  I'm trying to find some new things to take up some of that slack. I would still most like to get on full-time at a college, but I am a bit limited since I'm not really able to move too far away from doctors and family due to everything.  Any prayers on the job front would be greatly appreciated as well.

Last but not least, I'll be crossing a few more things off my "Living List" this coming May and June.  I have two big trips planned: 1) France & Italy tour that my parents are leading and that I am getting to go on in a chaperone slot   2) Maui & Kauai, Hawaii where I get to stay in one of my timeshares on both islands.   Those trips were already paid for before I found out about the lost income for future semesters, and I'm glad that I will still get to do them.  It may sound silly, but it is really only in/on those trips that I feel free from the little black cloud of stage IV cancer that hovers slightly behind me all the time.  When traveling, I am just Nancy getting to enjoy a new place!

Oh, I almost forgot --  My hair has gotten so long (at least compared to being bald).   It now touches my shoulders, as you can see in the first picture, and I can even pull it up into a ponytail (bottom picture - Yes, it is a little puny ponytail, but it is one all the same).  Woohoo!