Friday, October 13, 2017

MBC Day - Alone in the pink party

Have you ever gone to a party that was supposed to be for you, but it felt like you were alone and no one was actually paying any attention to you?  It is not a good feeling, but that is what it feels like to have metastatic breast cancer in Pinktober.   Everywhere I go, I am surrounded by pink reminders whether it is Panera with pink bagels, Tijuana Flats with pink chips, hockey or football games with pink pom poms or other things and any type of store trying to sell some pink item.  Honestly, there have been a few times when I have felt physically ill seeing all of the pink.   Part of the reason for that ill feeling is that it is a constant reminder of my breast cancer, and that can be very hard as you sometimes just want to go out and forget your daily troubles.   The other part is that all of this pink is in the name of awareness and finding it early = cure. Now, I believe that most organizations are trying to do the right thing and have the best intentions possible.  I also know that other cancers would love to get this much attention, and I agree that they should as well.

The  problem is that many of the things being sold have little to no money actually going to breast cancer awareness or research and/or are sometimes even have chemicals that could possibly cause cancer.  Panera's bagels support Moffitt and Tijuana Flats supports a breast cancer research organization.  If I were to buy pink things it would be this type where I knew exactly where the money was going.  Unfortunately, many breast cancer survivors of any stage feel like it has become commercialized and/or sexualized such as save the tatas campaigns when it should be save the mother, wife, sister, friend, etc.  Those with metastatic cancer don't fit the "found early now cured" mantra of the awareness organizations and are often left out of survivor events, support groups, etc., but they are the epitome of the women that we should be trying to help.

The other hard part of this month is that everything is for awareness and finding it early = cure, but the reality is that it just isn't true.  For me, we thought mine was found early as stage 1 in the breast to only find out that it had traveled even earlier to the liver, and I was really stage IV.  Early detection is not a cure.  The stats still say that 30% of women with early stage cancers will recur with metastasis, and 6% of breast cancers are stage IV (metastatic) from the beginning.  Those numbers haven't changed, and an estimated 40,000 women die each year from metastatic breast cancer (the only kind that kills).  Yet, most people will say due to the pink campaign that breast cancer can be cured.  It can't!  There is no cure, only ways of fighting it to hopefully extend life.  But there is a problem even there,  only 2-5% of breast cancer research funds are actually spent on metastatic breast cancer -- the only type that kills. (I know I've said that a couple of times, but I just can't stress that enough)  Metavivor is trying to change that so that at least 30% of funds are spent on the type of research that will help the 30% with metastatic breast cancer.   More awareness needs to be made of these things.

We get one day in the month of pink -- October 13th as metastatic breast cancer day.  If we really care about a cure, then stage IV needs more!

Thanks for reading what is apparently my yearly Pinktober post. Now, for what is going on with me:

My last scan at the end of July showed that I was basically stable (lymph nodes same size but glowing brighter) which was good but also a little worrying as my tumor markers had risen 3 months in a row.  We took a month off from checking the markers after the scan, and I was very nervous before my last appointment.  My doctor said that if the markers were up again then we'd scan again to see if a change of treatment was needed.  The September markers thankfully had come back down a bit which was a huge relief; so, the scan was put off for a while longer.  I did go ahead and find out what they believe the next step will be if/when we do have to change medications as it really helps me to know that a plan of attack exists.  Knowledge is power for me.  My next tumor markers will be run when I get my monthly shots this coming Tuesday.  So, I'd love prayers that the treatment is working, and the tumor markers will keep decreasing.

October is very busy with concerts and recitals for me.  I am performing a joint recital (clarinet & piano) with Adam Booher at Florida College on Monday 10/30 at 7:30 pm in Puckett Auditorium.  I'd love to see friendly faces in the audience!    Along with that, I will also be playing with the FC Wind Ensemble this coming Monday ,10/16, and Florida Wind Band on 10/22. It is always fun to get to play with groups like this, but with all of the rehearsals it makes for a busy next few weeks. So, I'm especially thankful for the couple of days of Fall Break next week.    That's my life in a nutshell! Hope your October is going well!

Monday, July 17, 2017

Take that cancer stat - 5 year edition

Five years ago today, I got the call that I had cancer. I was in North Carolina and had to quickly pack and get home for a doctors appointment the next day.  I had no idea the whirlwind that was about to be before me, and I wasn't sure when or if I'd get back up to this timeshare.  So, it is especially fitting that I'm typing this from the same bedroom where I received the call.  Even better is the fact that the whole family has been here, and we were taking family pictures today and had enjoyed a great weekend together.

5 years --- It seems like so long and a split second at the same time.  My oncologist has always been good to tell me that my cancer was "treatable not curable", but thankfully, she never gave me a timetable. Still, if you do much research, you end up stumbling upon the harsh reality and statistics of the disease.  Only 20-26% make it 5 years while only 2% make it 10 years.  I have to admit that this feels like a pretty big milestone even though I try not to worry too much about the stats.  Thankfully, these stats have gone up a bit (it was 20-22% 5 years the first time I saw it), and new treatments, like the one I'm on, have come about during these 5 years which hopefully will be true game changers.  

I am incredibly happy that I am doing as well as I am, and so I am grateful to be able to focus on the following stats that have occurred in those 5 years:
* 2 adorable nephews and an amazing niece have been born
* I've gotten to watch the teenage nephews in many concerts, half-time shows, etc.
* I've had the opportunity to make wonderful memories with my family
* I've been able to see many out-of town friends that I don't usually get to see and spend time with them
* I've become full-time at Florida College & truly enjoyed the work that I do there and elsewhere
* I've crossed 54 things off my 56 item original-ish living list (the list has grown more in the last few years)  ---the other 2 items will be crossed off hopefully soon with 1 place in August and 1 in December
* I've been able to focus on living and my spiritual life in a different way than many have the opportunity to do.  I wouldn't ever wish this on anyone, but it definitely makes you see life differently.

My tumor markers have been fluctuating, and the last two months they have risen.  I have a PTscan scheduled for next Monday so that we can determine exactly what is going on. I'll be honest....coming up on this date has been a lot harder this year with being back in more active treatment than it was when I was no evidence of disease.  I feel very confident in my team of doctors, though, and I know that they will do everything they can to ensure that I am doing a 10 year edition five years from now.

 I would greatly appreciate your thoughts and prayers that the PTscan will show that I'm stable or there is regression for the results and that I will have peace during this time.  I'd also love thoughts & prayers that things go well enough in the future that the 10 year edition and beyond are possible.  Thank you for all of your kind words and help over the last 5 years! I can't even begin to express how much knowing that I had the support of so many people  has helped me over that time.



Tuesday, May 2, 2017

I'll take regression

 I had my previous PETscan in November, and then it was a month and a half before I actually got to start my new medicines.  My tumor markers increased in that time; so, we are pretty sure I had some progression by January, but we just don't know exactly where or how much.

Fast-forward to results today of last Friday's scan.  The lymph node that we had biopsied has gotten slightly smaller from the Nov scan (originally 3.4x1.8 & now 3.1X1.4) and has slightly less uptake/lighting up than before (originally 6.9 now 6.2) .  So, it is considered that I've had regression of that spot.  There are a couple of other spots that had mild uptake, but my oncologist does not necessarily think it is cancer there.    Especially since we are pretty sure things got worse before they got better, the regression that we can be sure of is a very encouraging sign.  The combo of drugs that I am on  work slower than traditional chemo, and we are hopeful that things will continue to improve from here on it.  

For now, I'm going to be happy with this regression, and be thankful as every moment of stable or regression means more time.  Thank you for the thoughts and prayers!

Thursday, April 6, 2017

Time for an update

I've just started round 4 of the new treatment so I guess it is about time for an update.  I was really nervous about this combination of drugs because I had a friend have a lot of problems on it, but I have been incredibly lucky and had few side effects.  I  don't love the shots, but I sing hymns, supposedly in my head,  to get through the minute on each side. Apparently how loudly I'm humming/singing tells the nurse how much they are hurting as they are administered, lol.   My current hymns are Pierce My Ear (ironic, I know, but it is one of my favorites) and Surround Us O Lord. If you know of any good minute or so long hymns that I could put in the rotation, please let me know.

Along with the shots, I take Ibrance for 21 days of each month and then have a week off. The Ibrance definitely lowers my white blood cells, but thankfully, my neutrophils have stayed above the most dangerous range; so, I've been able to continue to work, etc.  I do have to take more precautions against infection as I could get sick much easier than most.  One of the things that made me nervous during chemo and now with lowered white blood cells is passing the communion as people so often come to church even while sick and often touch the bread as they are breaking it along with the trays, etc.  I have been so appreciative that the people who do the communion at Temple Terrace coC have worked with me on this and provided some individual servings so that I don't have to touch anything.   So, if you see me getting up before communion on Sunday mornings now you know that I am going back to get that and avoid any germs that might come with passing the trays.   I know it might seem like overkill to some,  but I did manage to avoid getting sick during all of the flu and other upper respiratory gunk that went around the last few months. With my lowered wbc counts,  an infection that most could get over very quickly could be quite dangerous for me.; so, doing what I can to avoid it is worth it to me.

There has not been a scan yet to give us any real results , but a PT scan will be done on April 28th.  I'll get the results of that at my monthly appointment the following Tuesday 5/2.    We have been watching the tumor markers which have always been fairly reliable for me.  They were in the normal range when diagnosed in November but they had done a 10 point jump up in the last couple of months. In January when we finally started the medication, they had raised another 7.6 points.  Since it took a month and a half to get everything biopsied and get on the new regiment, it is possible that there was some progression between November and January.   They've jumped around a bit since then, which is a bit stressful, but the most recent result (far left on graph below) is lower than it was when the cancer was found.


Hopefully, this means that things are possibly stable and/or moving in the right direction.  The markers are more about the trend than being a one-to-one correlation.  We'll know for sure what is going on once we get the pt scan done.  As much as I want the cancer gone and NED to return, I keep trying to remind myself that in metastatic world, it is a win anytime you stay stable or have any type of regression.  So, I am praying for any type of "good result", and I would still love your thoughts and prayers for that as well.  

In other news.......Sometimes it amazes me how things work out, and I just have to be so thankful. One of my online colleges has done some condensing of classes and beginning with this summer term, it will be unlikely for me to continue to have 2 sections.  It is amazing though how when one door closes another one opens.   I have been asked to create an online class for USF  that will begin in the fall semester.    It is a new twist on a class that I've taught before, and I'm really enjoying the process of working with their Innovative Education team to create the presentations and put everything together.    

Now I just have to get through the craziness of the last few weeks of the spring semester.  I know you're shocked, but I have multiple trips planned for the summer.  I had given myself a 5 year limit on going trip crazy, and after that I have to chill out a bit on it.  This summer hits that 5 year point which is important for many reasons. 

Anyway,  I'll report back once I have the results of the PT scan.  Hope the next month or so sends many blessings your way! 








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!