Wednesday, January 11, 2017

Starting the new plan to kick back cancer & get NED back

(For those of you on facebook, this may go back through some things you've already seen posted there, but I wanted to do a more detailed blog post for those who may not read things there.)

The biopsy was done on 12/20, and then I had what felt like the longest wait ever to get results. Thankfully, mom, dad, and I had already had a trip planned where we flew to Barcelona, Spain and then visited Morocco, the Canary Islands, Madeira, and some other locations in Spain before flying back out of Barcelona.  It was a wonderful trip and allowed me to put cancer in the back of my mind while on excursions at least. I still checked my voicemail and email every day to see if I had gotten any information, but if I'd been at home, it would have been excruciating.   Five minutes after landing at JFK, I missed the call from my oncologist as my phone was on silent. So, on the way to customs, I was trying to get the voicemail and then call my cancer center back.  When I finally got through to them after multiple dropped calls, my oncologist had already left, but they offered to text her for me.  This was late Friday afternoon, and she called me back very quickly (just one of the many reasons that I am so thankful for and love my oncologist).  She answered my questions as the voicemail had cut some of her message off and alleviated my fears (as much as one can at this time).

My oncologist seems to strongly believe that our new plan should be able to get fickle NED to come back around with good results.  The plan is 2 fold -- 1 is a set of shots called Faslodex to control the estrogen and 2 is a pill, Ibrance, that is supposed to keep cells from dividing.  The combo together in  a clinical trial showed about double the length of average progression free survival  from taking the shots alone.  My first Faslodex was yesterday, Tuesday, and I was very nervous about it. You would think with everything I've been through that I'd be used to needles, but I really hate them; so, I was wide awake at 4:45 yesterday morning fretting about the shots and classes starting that day.  The shots are thick and there are lots of directions to keep in mind such as making sure they are warm, they are administered slowly over a minute, and that you walk afterwards to help the drug move.  Honestly, the needle in my hand to take the bloodwork ended up being worse than the shots themselves.  I sang hymns in my head while it was administered, and while it wasn't fun, it was nowhere near as bad as I'd imagined.

Meanwhile, I've still been fighting the jetlag from not getting home Saturday morning until 1:45 am and not getting to sleep until after 3:45 am.  Well, let me tell you, it all caught up with me yesterday afternoon.  It was like the stress left me and boy, did I feel tired.  I had plans in the evening that I had to leave early as I was literally falling asleep at the table.   While fatigue can be a side effect of the shots, I really  think it was just the jetlag and stress finally catching up with me.  The 11 hours of sleep last night definitely helped with that some.  

For the pill, we expected it to take a while, but it got approved pretty quickly.  I should receive and begin it tomorrow/Thursday.  It will be 21 days on and then 7 days off.  It is considered a targeted therapy & not a traditional chemo, but it can cause side effects such as fatigue and low white blood cell counts which are the primary two of concern to me.  My white blood cells were in a good range yesterday; so, I'm  praying that I am not greatly impacted by either of those.  Thankfully, I'm starting from much better health than before; so, I hope this regimen will go well and be very successful.  Still appreciate the thoughts and prayers, though!

Friday, December 2, 2016

Next steps...

Just got home after spending all day at the surgeon's office. She was in an emergency surgery which kept running longer & being more complicated than expected. The surgeon isn't sure if the enlarged/shining area is a lymph node or something else and feels that a better CTscan of the area is needed to be positive of exact location, etc. I'm scheduled for that scan on Wednesday. After that, I am to see a gastroenterologist in her group that will do an endoscopic ultrasound with fine needle aspiration of the area. I don't have a date/time for this yet, but hopefully this would go ahead and tell us for sure if it is cancer, types of cells, etc. Then we will have to discuss actual surgery as needed based on the results of that and the location, etc.

During the waiting, I actually thought of a couple questions that I had forgotten to ask my oncologist when she talked to me Monday on the phone. Since we were in the same building, I went down to see if I could possibly ask her assistant, and she came out to talk to me. (This is just part of why I feel so thankful to have her in my corner) I was able to learn about our what our next steps would be medicine wise if it comes back like we think it will of being still estrogen positive cancer. It was a little hard to hear that she thinks moving out of the AI group of drugs that I've been on to a different treatment of a shot and pill combo each month would be the best way to proceed. The regimen she mentioned isn't traditional chemo, but it is still a bit harder than what I've been on so far. Regardless, knowledge is power, and it helps me to know what our next steps in that realm would be.  

I have to think back to April 2013 when I asked my oncologist how long people usually got from my current med, and she said months. At that time, I would have been thrilled to know that I would get 45 months out of it. I've had a good run, and if this med has run its course, she fully believes that we can get me back to a good place. I'm just not ready to see NED go away yet, but I may not have a choice for awhile. So, what I would ask for currently is that you please send good thoughts and prayers that everything is scheduled quickly and that if at all possible the outcome of the aspiration is that there is no more surgery needed (preferably that it is an anomaly & isn't cancer, but realistically, both drs so far seem to believe that my cancer returning is most probable from size, how it lit up on the scan, etc.).

Tuesday, July 26, 2016

Normal has never felt so good

My tumor markers are still in the normal range which means I'm still NED past my 4 year cancerversary.  Normal has never felt so good :)   My oncologist has decided that since my markers have been so reliable that we will only do the PTscans once a year; so, that means no scan until November.  That is a little bit scary, but considering they are injecting radiation into my veins, I'm also perfectly happy to not have that done as often.

I've got one more trip this summer before school starts, and I'm very excited about it.  I'm doing a Canada/New England cruise with my parents. After  the cruise, I'll get to go to Nashville to love on my new little nephew that will be here by that time.  Just thinking about him and all of the wonderful things that have occurred over the last 4 years, and I'm so humbled and appreciative of every moment that I have had.  After that, it will be back to the grind with school starting.  Hope everyone has a few more moments of fun before their "back to the grind" begins!

Tuesday, July 12, 2016

Nearing my 4 year cancerversary

I haven't blogged much in the past year because I've been pretty busy with working full-time at FC, part-time online, and continuing to travel and spend time with family. I've enjoyed my work, and I am thankful to continue with it over the next school year.  The travel has been pretty amazing as well.
In January before the spring semester began, I went with Mom & Dad to Panama. It was a fascinating trip to learn about the country and traveling through the locks was amazing!

At the end of February, I walked the Disney Princess 10K with Amy and Carole, and the three of us along with Laura had a fun weekend together.

For spring break, the whole family was able to get together in Destin, FL.  Even though the weather didn't cooperate for the beach most of the time, we had a wonderful time being together.

 I took two island trips courtesy of timeshare and airline points .  Early in May, it was Bermuda with its pink sand and shipwrecks.

I went at the end of May/ beginning of June to St. Maarten with day trips to Anguilla & St Barths. This island was so interesting with the dual cultures of French and Dutch along with Maho Beach where the planes fly in right over your head.
Later in June, my parents and I traveled to Brian Head, Utah to stay in one of their timeshares that allowed us to make trips to Bryce Canyon, the North Rim of the Grand Canyon, and Zion National Park.  Each park was different, but so beautiful in their own ways.

Now, I'm in North Carolina enjoying my yearly trip with my sister & her family at our timeshare.

 It was here on a Tuesday that I got the call that it was cancer, and even though the physical date is the 17th, today always feels like the anniversary. I am still No Evidence of Disease, and I'm thankful to have been NED for over 3 years now.  A doctor did give me a little scare at the end of school as they wanted something checked, but it has been found to not be anything worrisome. With my history, the doctors are always going to be extra careful; so, this is probably not the last time that we will double-check things.  Though it was a little stressful, I can't complain as it is better to check things out than risk a more serious issue later.

I will get my bone infusion next Friday (7/22) along with having tumor markers run. So thankful for the past 4 years, and I'm hoping for many more to come. I would appreciate your prayers for good results with this coming bloodwork.  Hope everyone is having a wonderful summer!

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!