Gemzar so far...

Cycle 1 of Gemzar was interesting as we began to learn how my body is going to react to it. In week 2, my bloodwork showed that my counts  - white blood cells, ANC (which is how neutropenic or susceptible to infection you are), red blood cells, hemoglobin, etc.  all went way down.  There was some concern about whether they were too low to do the 2nd treatment, but the decision was made to reduce the dose by 25% and go ahead with it which was a blessing b/c of the recitals the following week.   I was put on a mini-quarantine and had to avoid people as much as possible.  I was still able to teach wearing a mask, doing online activities, and/or using microsoft teams to give "live" lectures online.  My bloodwork on Monday in week 3 showed that the counts had gotten lower but the lowered dose had kept them from a huge drop.  My liver enzymes had shot up 4-5x what they normally run for me though.    Thankfully, more labs on Friday showed that those had come back down by about half and my other counts had started to go up a bit.   I started cycle 2 yesterday, and it will be a bit of a wait & see game as to whether the counts do the same thing this time or if it changes due to being further away from radiation.

Side-effect wise outside of counts, I've had a little bit of a skin reaction. I have super sensitive skin so it wasn't a huge surprise, and thankfully benadryl before treatment has seemed to help that.    There has been quite a bit of nausea, but my doctor has added a stronger anti-nausea pre-med to hopefully help with that as well.    Since we started chemo the day after radiation finished, the side effects may have been worse, but we don't know that for sure.  I've definitely battled some fatigue, but that isn't horribly surprising with chemo starting right after radiation either since both are known to cause fatigue issues.   With the recitals last week & everything else the past month, I also had to push through things a bit more; so, I have been instructed to get more rest this cycle and not push as hard.  Resting is always a hard thing for me, but I'm going to try as I know I need it, lol.   

 I was told that on Gemzar, some people's hair thins but most don't have hair loss.   I was expecting a little more shedding than normal, but my body likes to be "special" in these things too I guess.   On Friday night, hair was coming out every time I ran my hands through it, and within an hour, I had lost a pretty large "toupee" worth of hair .  Thankfully, I have a ton of hair (probably enough for 4 or 5 people, it used to take 2 hours just to roll it in the old "perm" days).  I tried to avoid running my hands through it, but I knew that wouldn't really help  since I had that "hair loss" feeling of my hair being tightly cinched even though there was nothing in it.    On Thursday night for my recital, it took 2 clips to hold back the right side of my hair.

By Saturday morning,  it only took one for the same hairstyle.  

  I continued to lose quite a bit the next 3 days as well; so, I went ahead and got it cut shorter yesterday after chemo so that it isn't as hard if more comes out .and that if some sections are thinner it won't be as obvious.   I know that people may look at these pictures and think - you  still have lots of hair (which I know, but some sections are much thinner than normal) Being a little proactive helps me to not worry as much about it as well.  My doctor said I probably would need to avoid coloring it as that could cause more to come out....so shorter will make that process a little easier as well.

I am really happy that I was able to do both recitals last week.  It was so much fun, and I'm very grateful to have a team that will work with me to ensure that I can still do some things like that.   Here's hoping that this cycle will go well and maybe level off count wise so that we have a better idea what to expect in the cycles to come.  Appreciate prayers always, and hope everyone has a good week!

Month of Insanity

The title pretty much says it all.  The last month has been insane!

So here is a little timeline:
Friday 8/16 - Found out previous cancer gone but new grew - so more SBRT & new chemo coming
Monday 8/19 - Went to radiation oncologist for 3 month check up & to start new SBRT process
Tuesday 8/20 --  The "MRI that wasn't" due to insurance complications
Wednesday 8/21 - MRI at 7 am that only happened b/c of a caring person at check-in that fought to get the right paperwork there;   Came home in afternoon to find that there was water damage to my laminate floors due to an AC issue
Thursday 8/22 -  FC classes start / SBRT simulation appointment
Friday 8/23 -- Insurance adjuster comes regarding floors
Saturday 8/24 -  Get 3 estimates on floors
Sunday 8/25 - Water mitigation company comes & tells me that they will begin tearing out my floors the next day. Wonderful friends from church help me get everything boxed & moved as needed.  (10 people got it done in an hour -  it would have taken me all night - so, so appreciative!)
Monday 8/26  - Floor tear out & chaos begins;  Find out that there was a complication with my SBRT  sim & have to go back to do it again
Tuesday 8/27 -  SBRT sim take 2 & hiring/signing paperwork for flooring company
Thursday 8/29 -  SBRT treatment 1
Friday 8/30 -- Thanks to a wonderful friend, I ended up at the Florida Georgia Line/ Dan & Shay concert which was such fun & a welcome reprieve

Tuesday 9/3 -  Move to my parents because flooring begins ; SBRT treatment 2
Thursday 9/5 - SBRT 3
Monday 9/9 - Flooring/ baseboards get done
Tuesday 9/10 - SBRT 4 has complications and has to be rescheduled; a wonderful friend begins the process of painting needed due to new baseboard and portions of wall being removed
Wednesday 9/11 - SBRT 4 actually takes place
Friday 9/13 - painting ends/  start process of getting house together
Saturday 9/14 - Move back to my house
Monday 9/16 - Final SBRT
Tuesday 9/17 -  Begin new chemo  - whew!

Besides all of the cancer and house stuff, there was also teaching all of my classes at FC and online  &  trying to rehearse a couple hours every day for my recital that is coming up.  My main goal was to be back in my house by the time I started the new chemo, and I am so thankful that it worked out. There are still lots of boxes and things in the wrong place, but I'm home and that is because of the wonderful support of family & friends over the last month.   Thanks for indulging my whining about the craziness, lol!  Plus, I love my new floors and wall color!

The new chemo  (Gemcitabine or Gemzar) has an infusion once a week for 2 weeks and then a week off where I will get labs done.   There have been some side effects such as nausea, fatigue, & headaches that I'm figuring out how to manage.  I also had a skin reaction for the first 3 days that required Benadryl / watching.   I was still able to do all of my teaching, rehearse/ practice, etc.; so, I am very thankful that it seems like the side effects will be manageable.  And let's be real, after the month I've had....who wouldn't be a bit fatigued, lol.   Once this first 3 week cycle is done, hopefully, I will have an idea how to best manage the side effects for the future.

I've had people ask how long I will be on the chemo, and when we will scan next.   This chemo will be my treatment for as long as it works.  I will always be on some type of treatment for the rest of my life, and we hope that this chemo will work a long time.   After SBRT, they wait 3 months to scan due to inflammation, etc. being possible for that long.  So, sometime in December will probably be my next scan.   We are doing tumor markers regularly.  After radiation, I expected that my tumor markers would rise as the protein being measured can be from both live & dead cancer cells.   I was pleasantly surprised that the markers went down some so that seems really promising to me!

It was a crazy month, but thankfully, the month got topped off in a great way by a visit from one of my closest friends and the FC leadership dinner that I was able to attend due to the generosity of another friend.    It was a great experience to get to  spend time with both of them and get to hear and meet Steve Forbes.

 I'll have chemo again this Tuesday and then my week off. My oncologist & radiation oncologist helped plan the SBRT and beginning of chemo  so that my off week would correspond with my recital.  I'm so thankful for this as I've been planning and working on this recital for quite some time.    I will get to perform at FC on Tuesday 10/1 and then again at HCC on Thursday 10/3 at their Ybor Campus.   Friendly faces in the audience always make a performance better if you are local and could come out for either one!

I would really appreciate prayers that this chemo will work and keep any cancer from growing with as mild of side effects as possible.   A little less stressful next few weeks or months would be wonderful as well, but it will be what it will be!    Thanks for reading, and I hope that you have a wonderful week!

Radiation worked but chemo didn't

I had my pet scan this past Monday and got the results of that today.  The good news is that the radiation worked.  The lime sized liver tumor and the cancerous lymph nodes near the liver that lighted up in April are no longer there or lighting up.  The bad news is that the higher dose of chemo did not keep new growth from occurring.   There is a new problem area in a different section of the liver and at least 3 retroperitoneal left aortic lymph nodes lighting up.   I had received my tumor markers on Tuesday, and they had gone up slightly (after 2 months of going down) which had me worried about something like this.

My oncologist had already spoken to the radiation oncologist that worked with me in April/ May.  That dr  believes that we can do the SBRT on the new spots, and thankfully, I already had a follow-up appointment scheduled with him for this Monday.   Hopefully, we will be able to get going on the SBRT soon.

I have stopped the previous oral chemo, and that has to clear from my system.  I will have to wait a week or two after the new radiation is finished, and then I will start a more traditional, iv chemo called gemcitabine.   It comes with lowered white blood cells and some traditional chemo side effects, though not as much hair loss as some others,  but it is generally well tolerated if needed to be on it for a length of time (which is what we are hoping for).

I'm a bit nervous to go without any treatment even for a short time since the new spots grew on the previous chemo, but taking the new one with the radiation is not possible due to toxicity.  A "cancer friend" has compared this to playing "whack-a-mole", and I thought that was a good description. Its a bit of a crazy feeling.   I would really appreciate prayers that we are able to get on to the treatment quickly and that it works as well as possible!  

7 year cancerversary

Today marks 7 years since I got the call confirming that it was cancer, and honestly once we knew it was metastatic/terminal, I never expected to get to 5 years let alone 7.  Making it even more wonderful is that I am at 7 years and while I've dealt with progressions, I am doing better than I could ever have imagined at this point.    So, so thankful!

I've primarily been posting elsewhere this year and not updating here; so, if you've seen it on Facebook, you can skip this paragraph.... In August, we had to switch to an oral chemo option called Xeloda due to some progression.  This is the last of the "easier" drugs as iv chemo will be what follows when this one fails.  It seemed to work for about 7 months, but in early April, a scan confirmed that both the liver & lymph node areas had grown.  Luckily, my oncologist was able to confirm with a radiation oncologist that a very targeted radiation called SBRT could be an option.  I did 5 SBRT treatments at the end of April/ 1st 2 weeks of May.  Once the radiation was done, we increased the amount of Xeloda per day (taken 1 week on / 1 week off).  Tumor markers have been done twice since the SBRT, and both times they have come down.  I have a petscan on Aug 12th & will find out results on Aug 16th.  I'd appreciate your thoughts & prayers that the scan will show that there has been regression.  

  I get asked a lot about whether or not I'm on treatment and why, and even if there is regression or I get to No Evidence of Disease again, I will always be on active treatment.  It is not preventative but rather to keep things in check as cancer is not always detectable on scans and/or can go dormant for a while but wake back up with a vengeance.   Once you are stage 4 /metastatic breast cancer, they will never consider that you are cancer free.  Most recently, the liver tumor was 6 cm, and there were 2 lymph nodes with cancer.  Hopefully, the next scan will show reductions in both, but either way I will continue with treatment.

 People also comment quite often on how much I travel (which I know is a crazy amount) and ask questions about why I do that.   My best explanation is always that my chance to travel  is now before I go on a treatment with bad side effects or even just have treatment requirements that make it impossible such as a weekly infusion.  Once you hear that "terminal/ treatable but not curable" statement, it puts things in a different perspective as you know you can't wait for retirement or that "better time" that so many wait for.  I have had several friends that were metastatic and have passed in the last 7 years that had severe side effects that kept them from doing many things.  My side effects are very livable right now, but just being on the chemo has put some obstacles in my path for some types of things that I used to enjoy doing when we'd go to North Carolina such as hiking, being in rivers/lakes, etc.  My time for travel is now as I never know what tomorrow may bring. (I know that is true for everyone, but a little more pressing in my type of situation) The more I travel and see all of the amazing things around the world, though;  the more places that are being added to my living list.

I've thought a lot the last few days about all the things that have changed over the last 7 years, and there have been so many blessings. Two of those are my work & health insurance situations especially as relates to my desire & ability to travel.    When first diagnosed, I was adjunct teaching a few classes for FC,  1-2 classes online for St Leo , and a class online for Strayer per semester.   I was paying for insurance that had an incredibly high deductible & out of pocket and not making consistent money as adjunct teaching can be very unpredictable.   Six years ago, HCC Southshore hired me as an adjunct to teach a music lit class on campus with the goal of getting the class put online.  I now teach multiple sections of the class online for them year round.  Five years ago,  I was hired full-time at Florida College, and I love the variety of classes that I teach with them from music lit to helping our future music educators.  This was also a great blessing with my health insurance.   I stopped teaching for Strayer, but about 2 years ago, I was asked to help create & teach a music and culture class for USF online.  I've now taught that class for 5 semesters.  While one job opportunity ended, I've been very blessed with all of the others.   I really enjoy the on-campus teaching at FC during the school year, but also all of the online teaching.  I didn't set out to do all of this,  but it has been a blessing for me.  It does mean that I am teaching year round and on many different school schedules, but the wonderful thing about teaching online is that I can do it from Venice, Italy or Tampa, FL just as easily.  These opportunities have allowed me to pursue my travel & living list more than I could ever have thought possible 7 years ago.

There are so many other things that have changed, but I have to mention that the past 7 years have added 2 nephews and a niece that I dearly love, and keep me on my toes!   I've been able to see my oldest nephew graduate high school and now work with him as a music education student at FC.  My second nephew will be a junior in high school this coming year, and I fully expect to see him graduate in 2 years as well.   I'm so thankful that I have been able to be here to see them grow and change, and I love them dearly too!

This date is always hard for me as there are so many ways that cancer has changed my life that could be considered negative,  but I have so many blessings to count as well! I am thankful for every day that I have with my family and friends, and while I hope no one else has to go through cancer, I realize that it has given me a different perspective on life and so many things that I can now appreciate as well!
 Happy 7 year Cancerversary!

Brighter is not always better

The past few months have been very busy with work, traveling, and getting to see family and friends. This February, we celebrated our 25th reunion from Florida College.  That does not seem possible as we are still SO YOUNG (at least at heart).  It was wonderful to see those that could make it.  As so often happens during lecture week, though, I caught a pretty nasty virus.  It made me have to stop my chemo & delay it for a week or so.  

Over spring break, I had an amazing trip to the Galapagos.  It was fascinating to see the animals that are only found there and enjoy walking on and snorkeling around the islands.   If you have any desire to do this trip, I strongly encourage you to make it happen.  It is definitely worth it!  I say that even after I came back with the Ecuadorian bug to beat all bugs.   I was horribly sick to my stomach for over a week, and chemo again had to be stopped and delayed.  

These delays had me pretty nervous because my February tumor markers had risen a little bit.   A Petscan & my bloodwork were done this past Friday, and I met with my oncologist to get the results today.   The good news is that there are no new tumors.  The bad news is that the 3 that are there (1 in liver & 2 lymph nodes) each got bigger & are shining brighter.    The radiation that you are injected with for the petscan makes cancer glow & the brighter it glows, the more active the cancer is being.   My CA27-29 tumor markers raised another 10 points proving that they are still a good indicator of what is going on inside.

We are in a bit of a conundrum.  My oncologist is looking into whether there are any clinical trials that  would be a good fit.   There also is concern that the difference may be the breaks. So, barring a great clinical trial option, we are going to give Xeloda another month.  Currently, I've been on 2500 mg a day (1 week on / 1 wk off).  We are going to try to raise that a bit by alternating 2500 & 3000 mg every other day to see if that would work.  After 2 more cycles, we will run the tumor markers again. If the revised dosage can keep me stable or have regression, we will try to stay on it for as long as we can.   When we need to change, either next month or later,  it will be to a more traditional IV chemo as what I'm on currently is the only true pill chemo option.

Cancer is a tricky beast and for lack of a better description, learns how to work around the medicines that you throw at it.  Eventually, each treatment will stop working....you just never know when that point will be. Since mine became active again, I have been going through basically a treatment every 10 months to a year.  I did express my concern about this because I have a relatively small amount of cancer compared to many metastatic patients.   Some oncologists wait to change medications until the patient has side effects.....I didn't have any liver side effects even when my liver was covered in tumors.  My oncologist believes in being a bit more aggressive and changing when it is obvious that the drug isn't able to at a minimum keep things stable.   Her goal is to keep as small of a tumor load as possible & possibly get that treatment that will fight it all the way back for a little while or at least give best quality of life for the longest possible time.  This strategy fits with my personality and how I want to address things, but it can be a bit scary to watch the available treatments get checked off the list.      There are still several options available, don't get me wrong, but watching the list get shorter is still difficult.  

I am currently in my off week, but will start the slightly higher schedule on Monday.  I would appreciate your good thoughts & prayers that the higher dose will be effective if possible, but if it is not the right drug/amount for this time, that we will know and be able to get me to a medicine that will be more effective.    I am so very thankful to have the oncologist that I do and to have so many people who are praying & thinking of me.   Even in news that could have been better, I know that I am blessed.

Forward is forward or in my case regression is regression

I have been on my new oral chemo, Xeloda for about 3 months now, and I had a scan last week. The last 2 tumor marker blood tests taken had gotten lower which was a positive sign, but I was still nervous for my appointment on Friday to find out the results.    Last scan had showed 2 areas of possible metastasis in the chest wall and spine.  The radiologist thought it was mets, but my oncologist wasn't so sure.  Either way, those 2 spots were gone.   Last scan also showed 2 liver tumors.  This one showed a larger liver tumor, but said the 2nd one was part of that not something different.  So that is a bit confusing for me to know exactly what is going on, but either way, it did not light up as bright which is good.   The 2 lymph nodes near my liver both shrunk and dimmed.  

I was a little surprised at how big the liver tumor is. Somehow, I pictured it much smaller than what it is measuring; so, that took me back a little bit, but overall it is still regression.  I wish it had knocked it all out already, but I have to be thankful for every bit of progress in the right direction no matter how small that may be.  

I take this chemo 1 week on/ 1 week off with pills at breakfast and dinner.  It has given me the standard side effects of stomach problems along with  hand/foot syndrome.   My hands regularly look like they are peeling, like from a sunburn.  I am constantly putting on lotion as you can't prevent it happening, but you can hopefully manage the peeling through lotions.  I have specific udderly smooth lotion that  I've been told to use twice a day,  but the ones for the middle of the day do not seem to be cutting it.  So, if you have any really good lotion that still has water as its first ingredient, that you'd recommend please let me know.  I'm on the hunt for something that I don't have to apply every 45 minutes.    I've had a few mouth issues as well, but mostly sensitivity to spices not really sores; so, thankfully, nothing as bad as the last treatment.  

I really appreciate all the prayers and good thoughts throughout all of my treatments, and I would ask that you please continue those.  Always hoping for regression and knocking those little cancer cells out!    Thanks so much!!

Time to Make a Change

Since March, I've been on "borrowed" time using a drug that is not really supposed to work by itself this long into treatment. In May, everything was basically stable; so, we decided to ride it out as long as possible with checking tumor markers every month until doing a PETscan this past Monday.  I got the results of that PETscan today, and unfortunately, it is time to make a change.

The lymph nodes were bigger & shining brighter.  The liver lesion we'd been watching was shining less bright, but it appears another lesion has appeared. There were also 2 spots that light up that we aren't sure whether they are cancer or not.  One of them is at vertebra T10, and my oncologist thinks may just be regular bone marrow activity.   The other is in an area of soft tissue near the end of my ribs which could also be inflammation.  Both were listed as possible for metastasis, but my oncologist isn't sure.  We aren't going to do any more testing for those places at this time, though, because the treatment would be the same either way.

I will be starting an oral chemo called Xeloda.   This comes in pill form, and I will take 2 pills with breakfast and 2 with dinner for one week on then one week off as long as the medicine is working, which we hope will be years.  This dosing has been found to help keep people from getting  side effects and/or help keep them in better control.  The side effects for this drug are primarily stomach issues, hand/foot syndrome (where chemo leaks into capillaries and kills tissue causing redness, pain, and peeling), and low white blood count/ higher risk of infection.    Starting with this dosing will also provide the ability to go a little higher or lower depending on side effects and cancer response.  

My oncologist understands how important being as free as possible to work, travel, live a normal life, etc. is to me, and this option, will be the easiest for that.  It is never fun to know there is progression and have to change medicines, but thankfully, I've had a few months to know that this was the next option and prepare for it.  I hate that I will be starting it the first week of classes since I don't know what side effects I will or won't get, but that could be a blessing in disguise as well since those first meetings are usually about the syllabi, etc.  and not necessarily a lot of "meat" of the class.

Today was also my regular bone building infusion, Zometa,  along with needing an iron infusion.  The iron one was easy, but the Zometa comes with some fun side effects of flu-like symptoms and bone pain.  So, this may be a weekend for me to just hunker down and catch up on netflix  or reading until the side effects go away.  I think I've said this before, but the weirdest side effect is the bone pain.  It feels like something is trying to burrow its way out from the inside of my bones. Needless to say, tylenol & ibuprofen are my close friends this weekend, lol.

Sorry if this is a bit of a debbie-downer blog post this time.   Hopefully it doesn't come across too negative or anything, but this is my reality.   My oncologist did tell me that she had a patient who had been on this chemo for 6 1/2 years, and I know of a couple of women on a breast cancer board that I belong to that have been on this chemo for 5+ years.  So, you never know which treatment might be the magic bullet for you, and I hope this will work as well as possible with as few side effects as possible for as long as possible.    Also, I'm so thankful that I was able to do my crazy summer of travel.  It feels like such a blessing to have felt that good and been able to enjoy that before having to make this shift in meds.

I'd really appreciate any prayers for this treatment to work and have minimal side effects.   Thanks so much, and I hope you have a wonderful weekend!