Five Years!

Five years ago today I rang the radiation bell that signaled the end of my treatments for breast cancer. It was an anti-climactic moment as, although I felt like I was “getting off the roller-coaster”,  I also knew that my days of dealing with cancer were not really over. 

During treatments all of my energy went to the fight: to staying positive; to making sure things stay as normal as possible for our kids; to not-worrying my family and friends with the way I looked, acted, or felt at any given moment. It was exhausting. 

When it was over, most everyone wanted to assume that things would go back to normal. But, I was learning how to deal with a new normal. And this, it turned out, was its own form of exhausting. 

I realized a lot later that I was depressed. To go from people rallying all around you, to people expecting you to just be-better-now was, quite literally, depressing. Add to that my own unanswered questions, and new-found fears of cancer returning, and it was just a lot to deal with. I slept a lot. I ate a lot. I cried a lot. 

And then I realized that if I thought there was still a chance I might die, why wouldn’t I take this “in-between” opportunity to really live??? I thought about what the number one thing I hadn’t done in my life that I really wanted to do was...and it turned out that the top of my bucket-list was going to England and Scotland. Over the course of the next year, I began to scheme and plot and plan and in September of 2015, one of my very best friends, Steph, her husband, Geno, Matt, and I, took flight over the ocean and had an amazing time seeing just about as much as you possibly can in two weeks on a really big island. I mean, we did the hell out of that island. 

But, I didn’t stop there. I had more plans and thanks to my wonderfully, supportive husband, I have spent the last five years doing things and seeing places and making memories with people I love. 

The five-year mark is momentous because all of the statistics say that for the type of cancer I had (TNBC - or Triple Negative), your chance of recurrence goes down super-significantly at this point - like to 5%. Considering the fact that all women have a lifetime risk of 12%, five-percent doesn’t seem that bad to me. (Yeah, I already lost that lottery once, and yeah that means I have the 5% PLUS the 12% chance of a new type of breast cancer, nonetheless, I still like the odds much better than what they were shortly before this.) So, it does, indeed, finally now feel like a day to celebrate, to me. 

But, as this day approached, I found myself getting a little down-hearted...without the excuse of CANCER looming over my head, do the adventures have to come to an end now? Is it time to stop living like I might die? 

The answer is very simply - No. No. No. No. No.

I wrote a blog post a long time ago about how “living like you’re dying” is such a farce, because who can do this unless they have the time and the money? No one can. Plus, it would be super-exhausting to constantly be jumping from one bucket-list item to the next. And that’s not living, either. 

So, instead, I have found myself watching for opportunities. Is there something a good friend has been “dying” to do? Let’s make that happen! Is there a place my family is inspired by? Well then, let’s go! Is there a show that everyone raves about? How can I get to it?! Is there an author, speaker, musician, movie star, that motivates me? I am there! Is there something I haven’t done with one of my kids that I just know we need to do? Let’s find a way to make it happen. 

It still takes time and money, and therefore it definitely has its challenges. But, I think we can watch for opportunities and always be asking ourselves, “How can I make that happen?” You might be surprised by the answer that appears. 

So, today I celebrate that I have made it to the five year mark...by couch shopping! Something I have never done before (we have all hand-me-down couches) and have always wanted to do. I did not purchase a couch - that was not the goal - I went shopping with my friend, Jenny, we found the perfect, beautiful, dream couch, and had a blast doing it. And today I look forward to the next five years. And the five after that. And the five after that. And...

I hope that you will watch for opportunities. You may even have the opportunity to help someone else achieve a goal on their list. Thanks, Jenny, for helping me to achieve this one!

(Meet "Clayton": The perfect couch.)

Too Much Pressure

I have three total cancer doctors - an oncologist, a surgeon, and a radiation oncologist.  Now that I am out of treatments I continue to see each of them either on a six-month basis (the oncologist and surgeon) or a yearly basis (the radiation oncologist).  Today was my six-month appointment with my oncologist, Dr. Cheng, and let me tell you...it's no fun.

Okay, who ever described a Dr. appt. as fun, but for like two whole weeks preceding these appointments, I find myself to be a little edgier, a tad bit angrier, slightly less patient, and way easier to upset.  I don't realize why for a long time and then suddenly it occurs to me, "Oh yeah, you have that hanging over your head.  No wonder."

Dr. Cheng is a really nice guy and personally, I think he is the bomb.  I mean, he did play an integral part in ridding my body of cancer and so I am incredibly thankful for him and all of his work.  But, I can't but help feel ridiculous as I sit there and explain all of the stupid questions that have cropped up in the six months since I have seen him last.  All of them relate to cancer...in my mind.  Most of them probably seem silly to him as he goes on to his next appointment with a patient who actually still has cancer and maybe isn't responding to treatment.  And yet, I know that if I don't ask him these questions they will eat away at me for the next six months.  So, I might as well purge myself of them, right?  In the meantime, I feel so dumb.

So...Dr. Cheng nicely, sweetly, and many times with a smile and an anecdotal story, answered all of my questions, put up with my silliness and sent me on my way till next time.  But, in the world of cancer, here is one of my silly questions: "So, when I came in the first time, with actual cancer cells in my body, what did my labs look like?  Do they look any different now?"  (One of things you have to do before seeing the oncologist is have blood drawn and then you wait a half-hour while they analyze it and send it to the doctor.)  Here is the answer: "No...basically we do the labs to make certain that there is no systemic evidence of cancer, but when you have a localized cancer, like that of the breast, your labs would rarely come back as abnormal."  That is a fancy way of saying unless you have cancer somewhere else in your body, your labs are not going to show us any changes.  Which I then Kelly-interpret as, we are looking for Stage 4 (death sentence) cancer evidence in your body.  Thank God they didn't find it, but wouldn't that make you a little wary as well?

I mean, basically, they have eradicated, to the best of their abilities and so far as they know, all of the breast cancer from my body.  Now, it is a waiting game to see whether or not the cancer had somehow already unknowingly spread.  If it did, eventually it will show its ugly face.  If it didn't, then you just continue to sit and wait.  Twiddle your thumbs.  Wonder every time you have an ache in your hip or a pain in your head...

When I have done this for five years (from the date of my last treatment - July 14th, 2014), then they will pretty much declare me to be cancer-free, safe, and a graduate from the school of cancer.  (I think this may only be a Triple Negative thing, so does not hold true for all breast cancer patients.  Some may have to wait for the 10 or 15 year mark for this excellent news.)

How does this make me feel?  I feel like I have to fit in everything I possibly can in the next four years, so that just in case the next six-month appointment is the time the shoe falls (is that the saying?), I have made the best of that time that I felt decent and wasn't in treatments and could glory in the adventure of this life.  That in the time I am given, I have lived

So yeah, this totally sucks.  I mean, we have four children to raise.  College to attempt to pay for.  Retirements we want to plan for (and NOT assume we won't make it to).  We have daily expenses and pressures (including one currently incredibly asthmatic child - Hugo) and so to be clear, the whole concept of "living like you are dying" is an exhausting one.  Oddly romantic because it is completely idealized.  I would love to live like I was dying...if I was a billionaire.  Then I would have four nannies (yes, one for each kid) and a personal chef to cook me fantastic healthy and delicious food (that costs an arm and a leg and takes five hours of time and energy to prepare) and we would go to places like Greece, and Tahiti, and France, and the Galapagos Islands and I would have a personal trainer to keep me in shape and motivate me to exercise.

Instead, we are incredibly fortunate that Matt has an awesome job and we can do many amazing things...but not everything.  We have to pick and choose and prioritize.  Save for college accounts, spend money on a new (to us) minivan, and deal with basically the same everyday pressures that every one else has...while also living like I could be dying.  Ha!  Ridiculous (said in the voice of Vizzini - and if you don't know who that is, then you really haven't lived and you might want to fix that)!  Too much pressure!  It stinks.

But, I am happy to say that I have already crossed off several things on my bucket list.  The most exciting being the Disney Cruise.  (Hopefully, I can blog about that another day.)  And, I will soon cross off the second most exciting thing - a trip to the UK with my hubby and some wonderful friends.  A 15-year anniversary trip that is both much-needed and long-awaited.

So, although I was incredibly nervous that they would give me bad news at this appointment and therefore essentially cancel our trip to the UK, we have passed another hurdle and I can really focus on the excitement of an impending trip (and the dread of a daughter entering middle school...but that is also for another day).  Wahoo!!!!  For today, at least, I am alive and making the best of it.

Off to play a game of Pairs with this cutie-pa-toot, soon-to-be fourth grader.  My Lariska.

Road Block

Wow, I can't believe that the last time I did a real honest-to-goodness post on this blog was back in September of last year, right as my kids went back to school.

I could use that as an excuse...I have been very busy taking care of my kids...but, while that would definitely be a part of it, I think there was a larger road block that I may have finally reached some kind of detente with. 

That road block has been one of mental health recovery. It's such an odd thing, really. You're living this life to the best of your abilities and then WHAM you are sucker-punched with The C Word, and you get into this groove that's called "fight cancer with all you've got", and while you're in that groove, people are rooting for, like on a daily basis, and they make food for you, and they do awesome things for you, and then one day you wake up, and you did it. You made it through the "fighting stage" and you are on the other side and it's such a...letdown. 

Did you think I was going to say something else?  Nope. It's the most bizarre thing ever. You should be happy because you don't.have.to.fight.cancer, anymore. But, instead it's this crazy combination of continued exhaustion, followed by the nagging questions, combined with the  persistent reminders, mixed in with the fact that life is continuing on around you and people are constantly asking you, "Aren't you glad that's over with?"  As if there could be any other answer...when really it was a question wrongly phrased. Because for me, it wasn't over with, really. I had a lot of demons to fight. I think I still do. 

But, while I was on the new road of learning to fight those demons, a lot of my mental energy has gone to fighting the depression that came with them. Don't get me wrong, I have been super lucky. Lucky enough never to have been taken down into a real depressive state, but it has definitely been a battle over the last year, and while in the middle of it, it was a lot harder for me to blog. 

I don't really like sharing all of those depressive thoughts unless there is some kind of something to be gotten out of them. Some kind of philosophical gain...or, something to laugh about. (That would work, too.) But, that kind of goes against the nature of being depressed, doesn't it?

So, while I wish I had had the ability to share all of those thoughts with you all, I think it would've have actually made it worse to hear your encouraging words. It would've made me feel like a wuss and I like to think I am strong.

Now that I am (maybe?) on the other side of this stage of The C Word, I can finally look back and share with you the takeaway.  So, I hope to be picking up my "pen" again in the near future to share some more of my thoughts and experiences in this wonderful journey of life. And now, life after cancer. 

2nd Annual Crazy Sock Day TOMORROW!

Despite making a sort-of New Year's Resolution to post once a week on either this blog or my Kons Family Blog...it hasn't happened.  Life is kind of busy with four kids, a husband, a puppy and all that goes with that.

So, apparently I only post when I want to ask something of you all...which isn't very nice of me... But, since you are all so nice, maybe you will forgive me???

Last year, on January 21st my sister, J.J. Schambow, organized friends and family to wear crazy socks and then post the pictures of those crazy socks to FaceBook in my honor.  It was pretty cool and a lot of fun.  This year, while I am doing really good, I now know a lot of people who are just beginning their journey or may be in the midst of their journey for the rest of their lives.  If you would be so awesome as to wear crazy socks tomorrow in their honor, I would consider it a great favor.

Please check out the FaceBook event page - https://www.facebook.com/events/1376585835983442/  "Like" it.  Share it.  Post your pictures to it, tomorrow!

Thank you so much!

The Cancer Club

Cancer has given me some opportunities that not every one has the chance to have...then again, trust me, you do not wish to have these opportunities, either.  We all know about the Moms Club you join when you have a baby - you realize that you are in some kind of amazing sisterhood that you were vaguely aware of, but now finally understand.  In a very similar fashion, there is the Cancer Club...in my case, the Young Women's Cancer Club, which is comprised of all women who, when they go in for their checkups and look around them quickly notice the major age gap between the vast majority of patients present and themselves.  It is a very surreal experience as every time (every time!) I go in I look around and think, "I just don't belong here."

Many of us are moms.  Many of us are moms to babies and/or toddlers.  Officially, this group is known as the Young Survivors Coalition (YSC), but you don't have to join YSC to be a member of the club.  If you are under 50 and have breast cancer, you belong.  We can complain to one another about our aches and pains, we share our fears and concerns, we shout our joys and triumphs, and we worry just a little bit less. We get our questions answered by people who have been there.

Through this group I have met some amazing and wonderful women; strong, courageous, resilient, and phenomenally kind.  You may have met some of these women, but unless you are a part of the "club" you probably won't get to see the side of them that I do.  I am very grateful for these women.  

Conversely, I am super-frustrated, annoyed, and dismayed.  Almost every day someone new joins the Facebook group.  We all say, "Welcome!" but what we are really thinking is, Not again.  Why are you here?  Why are we all here?  And, then the worst day comes when one of the women you have gotten to know announces to the group that their cancer is back (or never went away).

I am new to this group, so this is my first time.  I have been laughing at her responses and posts for months now.  She is crazy funny and finds the humor in everything.  Her positive attitude and hilarious posts led me to message her a month or so ago and I learned more about her and her type of breast cancer.  She made me laugh and I tell you, sometimes, that is everything.

Her name is Heather.  She has a three-year old daughter and the only reason she doesn't have more kids is because cancer treatments have robbed her of that opportunity.  Her cancer is back (or probably never left). It is now in her liver and bones and the reality is that her life is going to be cut short.  My heart is breaking, but she is still cracking jokes.

If you would like to help Heather to take her daughter to Disney World, or the Kalahari, or both or even more additional amazing places with the time she has left, it would mean the world to me.  Walks and runs and donations towards research are a gift to all of us, but for Heather it is now about perseverance and moxie (and a lot of ravignation).

Heather's Go Fund Me - http://www.gofundme.com/dtrdac

Whether or not you are able to monetarily help Heather out, please use your power of prayer!  You are some phenomenally powerful prayer people and if you can give half of what you gave to me, to Heather, then she is going to do amazing.  Thank you!!!!!

Go get 'em, Heather!  

Hello!

Hello...  Is anyone still out there?!  You may have thought that this blog was finished, but it isn't quite yet!  The only reason I haven't updated it till now is that I took back over the job of raising my kids...and that took all of my time and energy since it meant four of them running in and out and all about 24-7 for the last few weeks.

But, as of today, that all changes.  They are back in school!  This is the first year that I am whooping it up to send them back, since I have been so exhausted.  I haven't taken care of these munchkins full-time in almost a year and it has taken every ounce of my strength, patience, and endurance to get through these past few weeks.  But, now that they are gone (just me and Hugo now), I am missing them and wishing we could have fit more in this summer.  Sigh.  I guess there is next year.

Here they are excited for some first and lasts - First Day of Kindergarten for Declan, First Day of Third Grade for Lari and Last First Day of Elementary School for Kyrie (5th grade).

Now that I have a bit more time (it is so quiet here while Hugo is sleeping!), I am looking forward to sharing the following with you soon:

• How my port was removed!
• The story of Watson (the unplanned puppy)
• Ongoing cancer recovery
• How I may have changed...for the worse
• Cancer celebration party
• Many impending walks/runs
• Disney cruise vacation (woot woot!)
• Plans for the future
• And more!

So...should you care to hear any of those things, check back in again soon.  I still have a lot to say. (Lucky you.)

An Update on the Hair

And this is why I am so glad I have this blog.  My very best friend, Beth, has an Aunt who took it upon herself to write me a message in response to my last post, "Bravery".  Because her message really made me think again and gave me back my confidence, I would like to share it with you all:

"Hi Kelly -- 

(Then she said a lot of really nice stuff about my blog and writing, which made me smile and blush and feel really good and I think that is just for me so I am not going to copy it here.  Then she said...)   

Now, on to what really made me totally angry -- and I mean really angry, postal/road rage angry. That woman you went to who just clucked and coo'd over your hair did you a terrible disservice making you feel that way you did when you walked out of her salon.  You should NOT have felt that way.  She was just a bad, lazy stylist.  I mean, of course your hair will just keep getting better and better, but why didn't she even try to work with what you have already....Looking at your photos!  I think she had some hair to work with and didn't even try.  I mean heck, I even see stray strands peeking over your ears for heavens sake.  Even with just a quarter of an inch difference she could have really given it some shape. She could have shaved up the sides a bit and then totally spiked the top with tons of gell (the hardening stuff some of Ian's 19 year old friends use) and then.....gasp, tried to talk you into a wild blond color so you could have strutted out pf the place with a "Kelly meets Miley Cyrus" look. Yup, she didn't even try.  Also, you have that color hair that just begs, Begs, BEGS to be blonder. You should have walked out of there feeling like a rock star!   Anyway, there is NO REASON you should have had to feel brave to walk into a salon..and no reason you should have walked out of there feeling the way you did. That woman had no true artistry or styling imagination.  Check out Miley's sides....Shorter than yours!!! Give yourself a few weeks and then go to someone decent and start rockin' it girl! 

PAX - Your fan Ann G."

Wow.  So ridiculously cool.  So here is what I wrote back to Aunt Ann:

Hi Ann,

Oh my goodness, how nice of you to write that message to me!  You made me feel so much better.  And... YOU ARE TOTALLY RIGHT!  Now I am looking in the mirror at the length of my hair and I can clearly see that there is length there that she could have cut off and made into something.

Everyone has been right all along - I could get it trimmed!  She convinced me otherwise with her ridiculousness.  I shouldn't have listened to her with all of her coo-ing and clucking.  I just should've gotten the hell out of there as fast as I could and found someone who knew what they were doing.  I just felt so humiliated.  I should not have doubted all my friends and acquaintances.  How silly of me.  I am going to find someone who can do this right.  In the meantime...all I did today was fluff it up when I got out of the shower - no gel or anything - and even that seems to have made a difference.  I wasn't confident in what I was doing before, but now I am just going to go with it.  Already I like it so much better.  Why couldn't she just have showed me what a difference that could make?  She was a dork.  I feel so so much better - thank you so much for pointing that out to me!

Grateful!
Kelly

Not quite Miley Cyrus, but at least I made it fluffier and have a bit more of a style!

I felt kinda bad when I wrote that last post, but venting out my frustration allowed me to get over it and move past it.  Now, I am glad I wrote it.  I had several people come up to me at church today and tell me that they enjoyed it and Ann's feedback made me re-think my own thoughts and come up with a different conclusion.  Today is a much better hair day.  Thanks Ann!