Hooray for Energy!

The last few weeks I've noticed the return of something that I haven't had in quite some time --- energy -- woohoo!  I am probably feeling better now than I've felt in the last 3 years.  Everyone, including me,  assumed the chronic fatigue that I had previously was because of the autoimmunes and chronic hyperventilation syndrome, but I now think it was related more to the cancer growing inside of me than anything else.  Extreme fatigue days where I could barely function were occurring at a minimum of once a week previously, and I haven't had one since chemo finished (and probably even further back than that). It is a wonderful feeling to be able to have multiple all-day busy days in a row and  have plenty of energy to get through them with just being  normal person tired at the end.   This energy comes at the perfect time too, since I get to hold and cuddle my niece this weekend.  Can't wait!

I've also been able to go back to exercising more along with being able to go swimming and get into my jacuzzi tub now.  I didn't realize how much I'd been missing those things, and I am loving being able to do them again.  Plus, I have an incentive to workout because I plan to do the Miles for Moffitt 5K with people in May.   I'll be walking it, but I want to be able to walk it as close to my pre-cancer 5k times as possible.

Thanks to those who've offered additional places to add to my lists and to those who've offered to help me cross off some of the things that are already on there.  Hopefully, I will be able to cross off several over the next few months.   

My hair is coming in pretty well and is definitely lighter than before.  Most people are saying it is a dirty blonde type of color which is similar to what my hair looked like when I was a little kid.  It is still pretty short, as you can see in the picture below, but Florida weather is getting too hot and humid to deal with wigs and hats anymore. (Some of you may have already seen it on facebook, but figured I'd still include it here to document it as it grows.)  Plus, it is nice to be able to pick out an outfit and not worry about whether I have a hat to go with it.   I am trying to make sure that my earrings at least look "girly" so that there is no confusion with my short, boy-length, hair "grow" right now.   Well, that is all for now.  I still appreciate prayers, and hope that everyone has a wonderful weekend!

tumor markers & my lists

I got the results of my tumor markers this morning.  My CEA test is down to 7.2, and it had previously been 13.6.  The normal range for this test is 2.5 and below.  My CA27-29 test is down to 40.9, and it had previously been 66.9.  The normal range for this test is 38 and under.  This medicine is working and  things are still going in the right direction.  Or to quote the text that my brother David just sent me "You can almost say you are normal....and you've never been normal!"    I will gladly take any sign of things regressing!

Several people asked about my big and short trip lists so I thought I would share a few of the things that are on each.   Some of the places on my big trip list may never happen, but it doesn't hurt to dream right?  My lists were made as things came into my head rather than in any particular order or importance, and I keep adding things as they come to mind.  Most of the places on the short trip list are in Florida, and it has either  been a long time since I've gone, I didn't get to spend much time there, or I haven't ever gone to them as I said in the previous blog.  If you know of other interesting places in Florida or really anywhere that I should make sure to get to, please let me know :)

Big Trip List --
* New York/ Broadway show trip
*Alaska
*British Isles
*Greek Isles
*Back to Hawaii to see other islands not covered on first trip
*Bermuda
*Las Vegas to see Cirque D'Soleil shows
*Vermont/Maine
*Grand Cayman
*Belize
*Aruba
*Australia/ New Zealand
*Paris/Italy -- my parents may be leading a trip in 2015 that will cover this so a big goal is to go on that trip.
*Myrtle Beach/Charleston - I'm planning to go stay in Myrtle Beach for a few nights in one of our timeshares before my  yearly North Carolina trip with Jennifer, Mark and the boys. Hopefully, I can work Charleston in on the way up.

Short Trip List
*Key West - this should be getting scratched off over Memorial Day weekend
*Ringling Museum
*Dali Museum
*Kennedy Space Center - this should get scratched off on April 20th
*Mount Dora
*St Augustine
*Panama City / Destin
*Weedon Island Preserve
*Discovery Cove, or somewhere,  to swim with dolphins

The nitty-gritty of my diagnosis

I went to lunch with a friend this week, and she told me that she thinks most people don't really understand what I'm dealing with now that I'm done with chemo and surgeries. She encouraged me to just be really honest here and lay out the stats and everything else because she had overheard people talking about how great it was that I'm done with treatment and fine now.  She thought it would help people to understand my new reality and where I am coming from....so I'm going to follow her advice.

I don't want to be a Debbie Downer, but the reality is that I still have cancer.  The stats for women that are originally diagnosed at stage 4 with breast cancer is that the average lifespan after diagnosis is 18 months, 10-18% make it 5 years, and 2% make it 10 years.  While I know stats are just stats, that is a black cloud that hovers near or over me all of the time.   In my appointment yesterday, my oncologist discussed my future which included talking about how those stats are outdated for several reasons:
1) the medicine that I am on now has only been out for about 10 years
2) those stats also don't differentiate by age, whether someone took treatment or not, or whether they already had lots of health problems and/or died from something different than the actual cancer
3) I don't fit the normal mold of someone my age who presents with stage 4.  Most of the time that person would have found the cancer because of problems with the liver; so, the liver would have been further gone than mine was which also means the cancer would have been more progressed as well.

Many advances are being made all of the time so I know that there is more hope today than yesterday.  At the same time, my oncologist did say that most people only get months of stability (not the years I was hoping) on their first anti-hormonal.  There are several other anti-hormonals and combinations of anti-hormonals that we would try before going back to traditional chemo.   I had tumor markers done yesterday which will give us an idea of whether I'm stable or had regression/progression over the last 8 weeks.  Tumor markers measure an enzyme in the blood that is put off by the cancer so they are not an exact representation, but mine have been pretty reliable so far.   We will be doing tumor markers and a PTscan again in 6 weeks.  As of the last scan, I still had active cancer in my liver.  Even if the tumor markers come back in the normal range and/or the scan comes back as no evidence of disease, I will still be considered to have cancer, but I can  be happy to have a little reprieve of activity for a time.

  I've had people say "don't be pessimistic" when I mention hopefully being around in 10-15 years or something like that, but they don't realize just how very optimistic that is being. I have faith that I will be around for a long time.  I don't believe in the stats or let them define me, but they have definitely impacted my life.  I feel like I am living the Tim McGraw song "Live like you were dying", and I am trying to cross as many things off of my list now and this summer while I know that I feel good and   probably won't be having to do chemo.   I have a big trip list, and a short trip list. The short trip list is primarily things around Florida that I haven't been to or don't remember going to as a kid.  I crossed my first one of those off last Friday when I went to Bok Tower Gardens.  It was such a beautiful and peaceful place, and I highly recommend it if you haven't already been there.

  I am still me and  feel pretty good right now,  but I do have a new normal and path have been drastically shifted.  I don't think the same way about many things as I would have 8 months ago before diagnosis. I am at peace overall with my new normal, but there are still naturally some ups and downs with all of it.  The week before markers or a scan, I tend to have a lot of anxiety until I get answers.  I should have answers about yesterday's tumor markers sometime on Monday.  Again, I didn't lay all of this out there to be a Debbie Downer or to freak anyone out, but I just want people to understand the nitty-gritty of what I'm dealing with.

Watched hair does not grow

Like a watched pot not boiling, watched hair does not grow, but I'm still staring at it in the mirror multiple times a day to see if it is maybe any longer than it was the time before.  What am I expecting?  That it will magically have grown an inch in the last hour?  I know the stats that hair grows about an inch a month. Mine is somewhere between a 1/8 to 1/4 of an inch right now. I've been told that having the surgery right after chemo may have slowed the growth down some as well.  Even if so, it was still worth going ahead and doing it.   Your hair can grow back a different color and/ or different texture than before.  So far, mine seems to be a lot lighter than it was before.  I prefer to believe that is because it is coming back in blond, not that it is more white/grey than before.  I was blond as a young child so I'm just going to enjoy my delusion for a little while, lol!

As many have noticed, you never know what I might look like these days.  I rotate between blond, brunette, and/or a hat pretty regularly.  I figure that it is the one perk to all of this that I can change my hair color and length at whim right now.  It is a little weird to have to text someone that I'm meeting at a restaurant that "I'm blonde today" so that they can find me, though!

My recovery from the last surgery has been good, and I have what will hopefully be my final follow-up for that on Tuesday.  I'm expecting that she will lift the restrictions on what to lift and activity at that appointment.   Next Friday, I will be seeing the oncologist re: the medicine that I started a month ago, and we will also run tumor markers. Those will take a few days to get the information from. This week I began teaching my other on-campus class, and though I am pretty tired, at least I'm basically back to real life. That is a very nice feeling!

My biggest stress right now is dealing with insurance and billing, but hopefully my appeals will work so that all of that is taken care of.  Also, it seems like every time I get stressed out that something happens to remind me that He has it under control, and I just need to put it in His hands.  I know that is a result of the many prayers that have gone up for me, and I am so appreciative of them!

In other big news, David & Jenn (my brother & sister-in-law in Nashville)  had their baby on Monday.  I think my new niece, Lylah Ann,  is absolutely adorable so I had to share a few pictures!

Getting back to normal

My recovery from surgery is going very well.  I've been off of the prescription pain meds since the 4th day after surgery, and at this point, I just need ibuprofen a few times a day.  The biggest thing I have to watch for is not doing too much.  Since I feel pretty good, I sometimes forget that my insides are still needing to heal and push things a bit too much.   I'm still having to follow the restrictions of no lifting anything heavier than a gallon of milk, walking for exercise only, and try to avoid bending down as much as possible.

My doctor did clear me to go back and teach one of my FC classes on-campus this week. It went well, and it was nice to get back to normal a bit.  I was a bit apprehensive before the class since my identity for the last 7-8 months has been more cancer patient than teacher, even though I was still teaching online, but once I was there I wondered why I'd been a bit nervous.

I started my aromatase inhibitor(AI)  last week, and so far, I haven't had any side effects or anything from it. They will check my tumor markers in mid-March and  then again in May along with a scan.  I will stay on this medicine as long as it works.   I've been asked what that means a few times so I figure that I should explain.  Being my stage, I will be on some type of medicine the rest of my life.  As long as this medicine keeps me stable where I am or gives me a regression (what we hope it will do), I will stay on it.  If at some point, I have a progression again of cancer anywhere then they will know that it has stopped working effectively for me, and we will try another AI, chemo, etc. to try for regression or stabilization again.   Our goal and hope is to get many years out of this medicine, but if not,  my MO has said that there are a number of other AI's  along with other medicines that we can try.

I have been so thankful for all of  your prayers.  If you would still pray that my recovery continues to go well and that this medicine works to give me many years stable or preferably with a regression to no evidence of disease, I would really appreciate it!  Have a good week!

Surgery went well

The surgery this morning went well, and they were able to do it robotic laporascopically. I am thankful for that as it means a slightly reduced recovery time compared to having it open.  Hopefully, I will get to go home on Wednesday sometime.  Resting is so much easier in your own house where they aren't coming in every hour or so to give medications or check vitals.  I'm actually feeling pretty good, but I don't want to jinx myself too much as day 2or 3 after surgery are normally more down days.

We did have a bit of unwanted excitement today.  My mom & I had left our actual bags in the trunk of her car so that they could be gotten once I was in a room.  The car was valeted, and nothing was inside the car to entice anyone.  When dad went down to get our things, only some of it was in the trunk.  Mom's c-pap machine was taken and my bag.  I can understand why they took mom's c-pap bag as it could be mistaken for a camera bag or something like that.  They are going to be disappointed with what it actually is, and they will definitely be disappointed with my clothes, medicines, toiletries, and make-up.   It isn't that any of my stuff was that expensive. It  will just be a hassle to try to replace them while recovering from surgery, and some of the things were originally paid for by health insurance so I don't know what will happen there.    At least things can be replaced, and there wasn't any damage to the car.

 I think my most recent pain medicine may be starting to kick in so I'm going to try to get to sleep before the next time that they come in to poke & prod, lol.

Petscan Results

You have to smile when your doctor makes a point of saying "the results are good" when they pass you in the hallway before your appointment.  I got my petscan results, and everything has decreased.  My first pet said that there were 7-10 lesions; the second pet said that there were 3 individual lesions and 1 area of confluent lesions (multiple lesions that are merged together) .  This time the word lesion was never used on the results just the term focus.  My doctor says that is a good sign that they are no longer seeing a significant mass in each place.   There are no new lesions or areas of cancer, which is wonderful!  We still can't tell sizing, but the uptake (SUV - how brightly it lit up)  for each area did the following:

* posterior dome focus went from 5.6 down to 3.6

* left lobe lesion which had an suv of 4.5 is GONE!!!

* confluent lesions in right lobe went from 6.1 down to 4.3

* inferior left lobe focus went from 5.2 down to 3.2

The liver is a metabolically active organ so its normal uptake is between 2-3, and dying cells are more metabolically active. So the two areas that are in the 3's are so close to normal that we hope they will be be going away with the other soon.  While not dancing with NED (no evidence of disease) yet, I can't help but be thrilled with these results.  At stage 4, you are happy with staying stable and seeing no progression; so seeing regression is like icing on the cake.

We are going to repeat tumor markers again on Monday when I get my port accessed for my surgery just so that we have a post-chemo baseline.  My surgery is Tuesday 2/5, and then I will begin an aromatase inhibitor which will  block the enzyme that the  adrenal glands, fat, etc. use to produce estrogen.  These types of medicine can also shrink areas of cancer, but they work a little slower than chemo.  After seeing my oncologist every two weeks, it feels a little weird to know that it will be 6 weeks before the next appointment, but that will give me time to get used to the new medicine and for it to begin to work.   We'll do tumor markers again at that appointment, and she said we'll wait about 3 months or so to do the next petscan.  

That is my good news and next plan of action! I am so glad that things are still moving in the right direction, and am very thankful for all of the thoughts and prayers for these tests.  Please keep them coming as I move into this next stage of treatment.  They mean more than I can express!