NED for me!!!

Today is the day!  I hit my 5 year mark.  Today is the day after my last day of treatment 5 years ago.  I completed chemo and radiation on 7/25/2012.  What that means to me is that I hit a milestone I've been waiting for.  I went over to Seattle this afternoon to Swedish for my appointment with colo-rectal doc/surgeon Mindy H. and for the all clear.  I had gotten a CT on my chest and lungs (weird I know because I had anal cancer) but that was to follow up on some suspicious "spots" that I've had since my initial PET in 2012.  She told me the spots were stable, my lungs are fine, and after inspecting my darkest regions, THAT is perfect too.  I'm all clear.  Isn't that fantastic?  I'm super excited about it.

I had stage 3a which means that one lymph node near the tumor was 1 cm (or larger).  Anyway, I've always been worried about the spots and the stage because if one lymph was affected there could be more later, or spreading, or worse go to my lungs or liver (I have spots on my liver too but they are likely the more common ones a lot of folks have and not concerning). I remember the first couple days after I heard I had cancer, I read an article that the statistic listed at the time (from stats in 2010 tests) for making it to the 5 year mark without a reoccurrence was only 40% for people who had stage 3a anal cancer   How depressing is that?  Yikes!  I quit reading stuff after that   And this was way before I found BFAC website.  Still, after all this time, that statistic stuck in the back of my mind and I continued to wonder.  I'm sure by now, someone has come up with a better, newer, and much more optimistic statistic regarding the various stages of anal cancer.  I sure hope they have.  And, if they have not, I hope that others will have hope when they know it's possible to come out of this alive and mostly well. <smile>

So, today was my big day.  Maybe I can relax just a tiny bit more now.  Or at least now I can find a different focus or milestone to work on.  This past week I've reflected a great deal about all that has happened in the past 5 years after my diagnosis and treatment.  I feel so fortunate.  I think my very first post in this blog was titled "Lucky Me" if I recall correctly, without looking  back, some things you just can't forget.  And boy oh boy was I lucky!    Completely dodged a bullet.  Beat the big "C".  Went the 5 years!!!  Yay me.  Yay you too.  Keep fighting.

Can You See My Divot?

Well, can you?  Can you see it?  Right there on my chest.  No one has ever asked me in three years, "what is that from"?  You gotta wonder if they wonder.  I mean, I do wear a lot of tank tops.  Just FYI, that little "divot" is from my port.  My port that was installed to carry the chemotherapy into my body to cure the cancer.  I referenced a photo of it when it was put in (blog 5/30/12) and when it was taken out (blog 8/23/12).  Check it out.  Now...... I'm left with just this "divot" (and the 3 little tattoos on my hips and pelvis) as permanent daily reminders that this happened.

PS  It's sensitive to touch and I hate when pressure is put on it.  Weird.

Made it past the 3 Year mark!!

I haven't posted since January this year.  I notice I did 25 posts in 2012 after I was diagnosed.  Then only 6 in 2013.  In 2014 and 2015, only one post from me.  That's it.  I briefly scanned a couple of my posts before writing this one and documenting my thoughts about cancer, treatment, friends, BFAC, and other topics relating to how finding a tumor, treating a tumor, and being cured.  I'm super glad I wrote them and I think I should add more updates along the way.  So.... here goes......

I almost purposely missed posting a blog on my end of treatment three year anniversary this year which was 7/25.  Some days I feel like writing about it makes it too raw and too real, and I don't want to honor that memory with documenting it.  I want to put it behind me and pretend it isn't a part of me.  Then again, I'm so happy that I blogged my feelings and a few photos along the way (which was the whole purpose, to remind myself later), so that I can reflect on an event so major that changed my life, my thoughts, and my being.  It changed me.  So even though part of me doesn't want to write about it, there are those days when writing about it helps me through it and reading others blogs are still helping me through it, answering burning questions electronically, and sharing feelings and worries.  

The fact that I don't write about it doesn't mean that I don't think about it every single day, several times a day.  I think about the experience and what I went through.  I think about the love, support, and friendships validated throughout the process of chemo and radiation and it's aftermath.... which is still there.  For these gifts I am grateful.  I think about every ache, cough, and headache as "what if".  I never felt any of this BC (before cancer).  I feel in a deeper way than BC for my many friends that have suffered, are currently suffering, who have lost their battle, or had someone who lost the battle, who are fighting the battle, and who are surviving.  I feel for them as someone who is family.  I understand.  I suffer, fight, and live, by their sides, with compassion and deeper understanding than before.

So much has changed in my life since the end of treatment.  I am now NED and feel good about that.  I have had several PET, CT and Scopes to verify it.  The more time that passes, the more secure I am that the demon been exorcised and will not return.  I am down to seeing the gastro surgeon once a year now.  I am excited for 7/25/2017.  That is the famous 5 year mark that we all hope to get to without reoccurrence.  Even then, I think I'll worry for the rest of my life.  I am different now. I have changed.  This is my new normal.

On the personal side of life, in the past 3 years, I have become a grandparent of 2 exceptional, beautiful, gifted, amazing miracles, Liam & Liv.  I've moved.  With this move, we're in Wenatchee again and totally enjoying life here again.  My whole family has moved (to be close to each other) back to Wenatchee; Sam, my mom, Amber & Adam (and their kids), Adam's mom & sister and hopefully more to follow.  I've changed jobs (still with Wells Fargo though, 10 years this Sept 2015).  I get to go on some fabulous vacations with Willie a few times a year.  I'm happy.

10/17/2015 with Liv Catherine and Liam Cameron Nealy 

PET & Routine Follow Up Appointment 1/2/15

I had to postpone my PET from last month to yesterday, 1/2/15. The good new is that after all the SCANXIETY of the wait, all is clear, nothing lights up, the "spots" on my lungs and liver are still there, no change.  I'm so happy to report that I have gone 2 1/2 years (since end of treatment on 7/25/12) NED.  YAY ME!  I wish all of you a happy & healthy new year in 2015.  Every day is something to be so grateful for don't you think?  Life is good!

Almost 2 Years - Update

I want to first start out by expressing thanks to the Blog For A Cure website and my "supporters" on that site.  Being a member of that site makes me grateful once again that I found such a resource (which I found once I finished my treatment.  I think you find things when you need them most and thank goodness I found that one by accident).  I am grateful that I have people supporting me who have gone through what I have and are able to share their experiences, thoughts, ideas and support in a virtual way with me that I find almost more helpful than my doctors in many ways.  I have learned so much more on BFAC than I ever thought possible.  For that, I am most grateful.  

That being said, I went to my new colo-rectal doc today.  We moved 3 months ago from SLC, UT to Wenatchee, WA.  Coincidentally my colo-rectal surgeon in SLC had a great recommendation to someone in Seattle who actually was her fellow.  They know each other well so are able to share info easily.  I am now going to Swedish Medical Center in Seattle.  It's a bit of a drive (2 1/2 hours), but worth the trip and since there are not any colo-rectal surgeons or cancer care in Wenatchee, I have to do it.  I am very happy with my new doc and again, the appointment went very well as they all have so far.  Everything looked perfect (with scope this time and DRE).  I am always glad when I hear that.  I go back again in 3 months for follow up since she isn't familiar with my butt.  LOL... . Then a CT scan in Nov. because it will be a year since my last one.  I always feel better when I'm done with my appointment because I always worry starting a couple weeks before any appointment.  

Again, thank you my BFAC friends for the feedback on my last post "Embarrassing Question" which made me feel better knowing I am not the only one having certain issues.  I wish we all didn't have the after affects of cancer treatment, radiation and chemo, but glad we can share our experiences from the standpoint that we all went through this type of treatment for anal cancer.  

As I come smokin' up on 2 years post treatment (July 25th) I am happy to report, nothing new.  

Super Scanxious

I got home from our vacation (cruise from Venice to Barcelona) on Sunday night at 7:30PM, 11/24.  Yesterday, went to work and was super tired (jet lag) mid-day so came home for a nap.  On the way home, I checked my voice mail and there were 12 messages on there.  I hadn't checked my voice mails during the 11 days I was in Europe.  Had a message from my surgeon whom I was supposed to meet with today (11/26, my birthday) from Monday last week the 18th asking me to call her.  Shoot!  I figured that there was an issue with my CT scan I had in early Nov.  Why would the doctor personally call if there was nothing wrong?  There must be something wrong…. what was it?

I tried calling her back but since it was 2:30 and she was in surgery I ended up talking to the MA who didn't see any notes.  Bottom line, had to wait until this morning to find out the news.  Shoot!  Needless to say, I didn't sleep well.  I was thinking about what could be wrong, what the issue was, what my outcome would be.  I truly hoped maybe she was just going to reschedule my appointment because she was going out of town for Thanksgiving.  Or, perhaps the CT was not good or something.  

I arrived early for my 9:15 am appointment.  Got there at 8:50.  She was late and didn't come in my room until 9:45 wouldn't you know it.  I was trying so hard not to worry and fret about what she was going to tell me.  The result was that my scan showed 2 spots on my liver.  Ahhhh……. Thank goodness! At least now I knew.  I was sort of relieved because I knew that my two previous scans, one six months ago and the one 10 months prior to that in May 2012, I had those spots which were not a huge concern, just something to keep an eye on. And, they didn't light up on the PET so maybe I don't need to worry.  I had this CT at a different place so we needed more info to rule out any issues and the doctor needed to get the other scans to compare to this recent one to see if these were new "spots", or the same old "spots".   This would take about 3 - 4 hours to get the comparisons.  Shoot!

It is now 4:45 PM as I type this and I still hadn't heard from the surgeon.  I know she's super busy.  I hated to call and bug but did it anyway on the way home from work (early because it's my birthday today).  I wanted to make sure that I followed up just in case she needed to prod the other doctor about it before the holiday. 

Sure enough, I just got the call…….. The spots are "stable"!!!  Thank goodness.  Happy birthday me!!!

Update - Colonoscopy, Biopsy, DRE, CT, Surgeon and Radiologist

I sure didn't realize how emotional and stressful it is to wait for my very first biopsy results, doctor to come in and read the results of CT scan, and wait.........

Prior to the first day when I was diagnosed that fateful day May 16, 2012, I really hadn't had much experience with doctors, needles, drugs or my own mortality.  Now, the doctors, needles and mortality are not the things that disturb me, it is the ever impending worry of wondering what will happen next and of possibly hearing bad news.  Up until May of 2012, I pretty much felt like one of the healthiest people I know.  Even the life insurance company had rated me "superior" and granted the lowest rates to me in the summer of 2010.  Now, I don't worry or fear the stick of a needle, the concern of drinking colonscopy prep, or XRays.  I worry about the waiting for results to be heard..... the waiting for the end of 5 years to come...... the waiting for any bad news.   

I think this is just part of life.  Waiting.  Good news or bad, waiting just isn't comfortable.  The strongest muscle we have is our mind and mine works overtime dreaming up what "might" be.  Once you hear you have the big "c", your mind is never the same.  I think about it every single day.  Even though I don't look like I ever went through anything at all and even when I was going through it I didn't look like I was, it's a good thing you can't see inside my head.  Inside there is what has changed the most.

Right now, I am a 10 months post treatment.  I had my first colonoscopy with some biopsies one year after my first one.   Colonoscopies are not really NCCN (National Comprehensive Cancer Network) recommended follow up for anal cancer I've been told.  Most of the time they just do anoscopies or DRE (digital rectal exams).  But my surgeon ordered one along with a PET/CT.  She just wants to keep a close eye on things and if these help her do that, I'm down.  There was a mix-up with the PET/CT in that my insurance wouldn't cover it, so a CT with contrast was done instead on chest, abdomen and pelvis.  After some pointed questions, it seems a CT is just as good and will let the docs know what they need to know just as well as the PET/CT.  I am not fond of these procedures and don't want them all the time to comfort or discomfort me as the case may be.  I'm glad my doctors haven't felt like I needed anything done prior to this time.  It has given me plenty of time to heal.

I was pretty anxious about waiting for the results of both of these important tests, especially since they were my very first post-treatment.  And even though I was in no big hurry, hey seemed a long time coming.  It seemed that other anal cancer patients get them much sooner.  I try not to compare like they say, and trust my docs (within reason) because they know a lot more than I do, but it's hard not to wonder about the followup after treatment variations. 

This year the gastroenterologist seemed smilier than the last time he did my colonoscopy.  I know I wasn't as scared about it.  Just get it over with will ya?  The good news is they called me a couple days later to let me know the biopsies were clear, scar tissue, no cancer.  YAY!  That was so awesome to hear.  On paper, the three specimens submitted on one slide, looks like this in writing:  sections show multiple fragments of squamous mucosa with reactive changes and minimal chronic inflammation.  There is no koliocytosis or dysplasia, as confirmed by immunohistochemical staining for P16 and K1-67, respectively.  There you go......  pretty simple right!  Scar tissue, no cancer.  Come back in 10 years when I'm 60.  

Moving on to the CT done on 5/14, that is another story.  I sat there yesterday in my surgeon's office at 9:00 shaking, worrying, stressing out....... until she came in finally and let me know the results.  Again, good news.  Even the good news sometimes sounds a little bad.  I am always waiting for the next shoe to drop with this thing, but the good news it's all pretty good news.  I have these two spots in my lung, that haven't grown or changed at all.  Good news.  I have these cysts in my liver, normal I guess, which remain unchanged.  Both of these things showed on the PET/CT last year but didn't light up as cancer.  My docs are "watching" them though.  That's why I say the good news sometimes sounds bad.  Because you always have to "watch" things once you have had cancer.  Then the lymph node, right lateral to the rectum, now measures 5 mm X 5 mm, compared to 1.1 X 1.6 cm on the prior study (5/21/12).  Both the surgeon and radiologist think this is very good.  We didn't have PET to look at, which would light up any "cancer" larger than 1 cm in size, but my new smaller lymph has shrunk down sufficiently enough that all three of us are very happy about it.  Of course, we are "watching" it.  Always watchful, alway waiting.  I hate that.

So in the end, literally, my surgeon finished her DRE and other physical inspections and reported several times that it feels "perfect".  No more tumor, still, waiting, watching.  The final "impression" statement on the CT scan printout reads:  Since the prior studies performed in May 2012, no evidence for metastatic disease to the chest, abdomen, or pelvis.  Good.  And meanwhile, I wait.