Saturday, August 22, 2015

Fighting Battles


I have been thinking a lot this week about our personal demons.  We all have them.  Alcohol, drugs, pills, food, shopping...we all have something we just can't resist.  I have a friend who is struggling right now, fighting for her life, in fact, trying not to let her demons win.  Unfortunately, I'm afraid she is losing the fight.  I have tried everything I can think of to help her, but ultimately, this is a battle she has to fight on her own.  I feel helpless, watching her world disintegrate and knowing that I can't do a single damn thing.  Her demons have beaten her down, taken away all of her self-worth, humiliated her and left her battered and bruised from the inside out. I wish she knew how important she is to so many people, how many lives she has touched and what a huge hole she will leave if she lets those demons win.  I so desperately hope she can find her fire again, her will to not just live but to live a rich and beautiful and healthy life, one filled with love and happiness, one where she keeps her demons at bay.  A life where she is appreciated and accepted with all her imperfections, not belittled and beaten down, judged and left behind.  I hope she knows that I will always be here, not just me, but an entire army of believers who know that deep down she is a fighter, and as long as she is fighting, we will fight with her.  But we can't swing the first punch or fire the first missile.  She has to do that.  I know she reads my blog, so I hope these words find her, and that she finds the strength to believe in her own strength. 

Before cancer, my personal demon was food.  For years, I have struggled with my weight and my relationship with food.  I always felt like food was the more powerful one in the relationship.  I often found myself powerless to resist.  I regularly overindulged, ate things that I shouldn't, or thought I shouldn't, "cheated" on whatever diet I was currently trying.  I obsessed about the last piece of cake in the fridge or that perfect bite of...whatever.  I went through fast food drive thrus and ate whatever would feed the demon.  I stuffed myself with food that tasted good but had less than zero nutritional value, filled with chemicals and preservatives.   I would make promises to myself and then break them the same day.  I watched the scale go up two pounds, down one, up another three.  The up was always more than the down and some days I felt as if I would never win. 

To be fair, it wasn't all bad.  I mean, a girl had to eat, right?  Food was the one thing that was a constant in my life.  It never disappointed me, it was always there when I needed it, it didn't judge me.  It was there to comfort me when my father died, eased the pain of hormone shots and failed procedures when we were trying to get pregnant, and then celebrated the births of all three children with me.  Food helped me make friends, impress people, get noticed. It was, and still is, a part of every life cycle event, holiday, get together, party, everything.   I collected recipes and cooked, tried to replicate the treats of my childhood, with varying degrees of success, fed my family well.  Food became a part of my soul, a part of my personality. 

And then, cancer came calling.  Eight months ago tomorrow, I had the surgery that would dramatically change my life...and my relationship with food.  I have had ups and downs in terms of eating.  For six weeks or so, after my second surgery, I was able to eat in limited amounts, mostly soft foods or foods I could cut into little tiny baby pieces.  But other than that brief time, my entire sustenance has been food through a tube.  My meals come in little boxes that I pour into a bag and pump into the port in my stomach.  We joke that the boxes say "New, improved taste!" as I press the buttons to start my meal.  Post radiation, I am working on swallowing.  Sips of water mostly, sometimes a smoothie, as there is still too much swelling to try real food.  And it is work.  I have to really concentrate on swallowing so I don't choke.  That makes the idea of eating a whole lot of work.

Surprisingly though, I am still obsessed with food.  I watch the Food Network religiously, still tear recipes out of magazines and pin recipes to boards on Pinterest.  I fantasize about what I am going to cook, to eat, when I am able.  I found that I am not alone.  Many of the head and neck cancer survivors that I talk to have the same obsession, and some of them have not eaten in years.

I think when food and I re-enter our relationship, there will be a new dynamic.  I will not deny myself anything, that has already been done for me, in a torturous way.  I will not feel guilty about eating, but I will appreciate the quality and value of the food.  I will savor bites and let them linger instead of wolfing them down and not even registering a flavor.  I will enjoy my relationship with food again, but I will seek out foods that are healthy and disease fighting, instead of toxic.  And if I slip, that's okay, as long as I enjoyed it.  There is always another meal, another day to live, to eat. 

When I sat down to write today, I didn't think I had much to say.  Guess I was wrong.  Thanks for going on today's journey with me!

Sparkles and love to you all,
Gayle


Tuesday, August 11, 2015

Busy, busy day

Yesterday started early, with an 8 a.m. appointment with the speech and language pathologist. I had to chuckle a little as I typed that because in my old life, 8 a.m. was not considered early at all.  But I digress...Without getting into to many details, the appointment that ensued was both interesting and emotional.  Basically, what it boils down to is that the next several months are going to be hard work to try to get my voice and speech patterns back to close to pre-cancer levels.  If you hear me making strange sounds or chanting nonsense words or see me twisting my mouth into various shapes, please don't be concerned.  I haven't lost my mind, I'm just doing my exercises.  Well, I might have lost my mind a little bit, but not too much more than usual.  This is going to be a lengthy process without a guaranteed outcome, but I just have to work with what I've got.  I don't know if it is going to work.  I have stopped trying to predict the future because I am apparently not that good at it.

After a feeding and brief rest, it was time to go see my radiation oncologist.  Many of you drove me to radiation and know that I had to go about 40 minutes from home for treatment because that was the closest Radiation Center.  Fast forward to one week ago and Kaiser opened a new radiation facility just ten minutes from my house.  Sigh.  Oh well, I'm certainly not volunteering to go through that again.  The good news is that I get to do all my follow ups at this closer site, as my doctor has moved down here.  The new building is absolutely spectacular, with brand new equipment and beautiful rooms.  I didn't see the radiation rooms but I'm sure they are nice.

My RO is lovely and patient and answered all of my questions, even the ones that were seemingly random. (And the answer is, yes, even though my PET scan will be from my head to mid-thigh, I do still need to get a mammogram.  But it can wait until I am feeling better.)  Then came time for the scope, my favorite part.  If you have never been scoped before, well, let me tell you, you are missing a good time.  First you get to inhale lidocaine to numb your nose and throat.  When you are good and numb, the doc threads a long, thin camera up your nose and down your throat as you breathe in to help it move.  It doesn't hurt, but it really isn't comfortable...I swear it felt like she was trying to get that camera down to my stomach.  But no, she stopped at my vocal cords, which were now projected on a huge monitor.  Even I could see that they were still swollen, with my vast understanding of physiology.  (Guess I should have paid more attention in that class in high school!)  She concurred with my surgeon that the trach needs to stay in.  Fine, whatever.

After removing the scope carefully, she congratulated me on finishing my treatment.  She told me something that I had heard before, but needed to hear again.  Sometimes I feel like I make a bigger deal about how I am feeling than I probably should or push myself because I should be feeling better because I'm done.  She explained that I just went through the hardest cancer treatment there is. The hardest.  Some of her patients don't make it through, they give up in the middle and search for other solutions.  It was sort of like a pat on the back, an atta girl moment for me. And she reminded me that I am still going through it.  While my last radiation treatment is now almost seven weeks behind me, I still have at least five more weeks on this roller coaster ride.  It is so hard to feel horrible, then feel better, and better still, and then feel really pretty awful again.  I feel like I have had so many ups and downs the last seven weeks, I'm not really sure which way is up.  Some of you know that I am currently fighting an infection in my mouth, which is caused directly by the radiation, as it changes the pH in my mouth.  I went from being up and around and active, to back in bed and on pain medications, not sleeping because of the pain, feeling a little defeated.  No one can tell me how long it will take to beat this infection, I'm hoping not much longer.  I very much like being on the top of the hill of this roller coaster, instead of down in the valleys.  Waiting for the car to pull into the station, because I am ready to get off this ride.

So, the plan going forward is this...I will have a CT and PET scan in September, see my surgeon in October (and be scoped), see my radiation oncologist in December (and be scoped), and then will continue to see one or the other of them (and be scoped!) every two months.  Assuming I have no evidence of disease (NED...apparently cured is not a word we use) after my scans, I will have another scan in a year, to compare to the baseline.  At two years NED, I will be considered to have a much lower risk of recurrence. 

Well, enough of this for now...it's pain pill time.  Sigh.  Hoping to be in a better mood the next time I post...thanks for sticking with me on this rollercoaster.

Sparkles and love to you all,
Gayle

Sunday, August 9, 2015

Birthday Wishes

So today is my birthday. I am happily turning 43 years old. Actually, I think I have never been so happy to have a birthday as I am about this one. Not that 43 is a milestone of any sort, but for me, I suppose it is.

One year ago today I was floating in a pool at a fantastically lovely beach house, spending the weekend with my Mommy friends, as we have done every year for...(not sure how many, but it is a long time!) These weekends are always filled with really great food and really great conversation, lots of cheese and chocolate and wine (all the major food groups) and at least one spectacular meal out or other event. We moms reconnect as adults, get to have conversations and actually finish a thought without being interrupted, sleep in the most amazingly decadent beds ever made, and laugh...a lot. My favorite thing to do is to float in the pool, stare up at the sky, and just listen to myself breathe. It's a sound I really only hear once a year, as there are no little voices drowning me out. We have had some amazing adventures, starting with the leopard spotted limousine, a chance meeting at a restaurant with Kevin Bacon and his lovely wife Kyra Sedgewick (who ran right into my pregnant belly), and, of course, seeing the one and only Prince in concert. We have celebrated the births of our children and mourned the deaths of our parents. It is our one chance to slow down and catch each other up on all the happenings of the past year. I treasure that weekend and always come home renewed and refreshed and maybe a few pounds heavier. (Did I mention the cheese and chocolate?)

One of the big realizations of these weekends is that we just never know what is coming around the next bend or the next flip of the calendar page. Turns out, the year we saw Prince, I was already pregnant with my third, I just didn't know it yet. (Of course, I wouldn't know for quite a while, but that is a story for another time.) Maybe that's why he likes music so much! And of course, last year when I was floating in the pool, listening to my breath, I had no idea that in a few short months my life would change so dramatically. My 42nd year, except for the first few months, has really been pretty crappy. I have had more days of feeling bad than feeling good and more tears than I can count. But of course, there were moments of happiness, of feeling not so bad. There were the lessons learned about the love in my world and how I didn't appreciate that it was there. I have learned to tell people what I am thinking and feeling, and I have learned about the power of prayer. All the months of not being able to speak taught me to be a better listener, especially to my children. My husband and I could not be any closer. Most of all, I have simply learned to be thankful.

We had a very quiet celebration today. I'm fighting an infection and I'm still not eating, so no special dinner or cake for me. Instead my family showered me with gifts and love. My brother came in from Baltimore specifically to be here for my birthday. My daughter proved that she has inherited my crafty gene with not one but two cards, complete with sparkles. My boys have given me more hugs and kisses than I can count. I am still trying to catch up with all the birthday wishes on Facebook (if I haven't gotten to you yet, thank you!) I am looking forward to being 43. Because I get to. And for that, I am most thankful.

Who knows what this year will bring. My one birthday wish is that this year brings me a clean bill of health, continued recovery, a return to teaching, and that I continue to treasure all that I have learned. Okay, so maybe that's four wishes, but who's counting?

Love and sparkles to you all,
Gayle

Thursday, August 6, 2015

Looking back to look ahead

I was cleaning up the office/craftroom/spot-to-dump-anything-you-don't-know-where-it-goes room and accidentally ran across some pictures from when I was still in the hospital. I say accidentally, because while I certainly knew the pictures were around somewhere, I had conveniently forgotten where I had hidden them. (Unfortunately, that is happening with more and more frequency lately...every day is an adventure in discovering where I put things away!) These were the pictures that my sister-in-law graciously took of me to help the kids know what to expect when I came home. When I look at them, there is no question in my mind why the little ones were so afraid of me those first few days. The images are jarring. I truly was a terrifying sight to behold. All those scary, gory Halloween costumes that are starting to pop up in stores (really, it is August!), they've got nothing on me!


I have waffled about putting some of my initial pictures on this blog. Some days I think that everyone should see the pictures, if only as a cautionary tale. Other days, I think that no one should ever have to look at them. I have decided that I am not going to post them. I'm not worried about what other people would think of the pictures, except that I really don't want the pity. No, I'm not putting the pictures up because I simply don't want to see them regularly. I don't want to google myself ten years from now and have that be the image that pops up. I don't want to be haunted by the visual reminder of the hardest days of my life. So, I am putting the pictures away again, this time face down in a drawer I use frequently. That way I know they are there, but I don't have to look at them unless I really want to. Maybe someday I will be ready to move them, but for now, they need to stay where they are.


Some days I am frustrated that things are not moving faster with my recovery (pretty sure I have already established that patience is not my thing!) but this was really a wake up call for me. Those pictures were taken a mere eight months ago. They show me at my most vulnerable...tongue huge and distorted, black stitches running across it, sticking three inches outside my mouth and so swollen my jaw was opened so wide I could have been singing opera. My entire body was swollen from surgery, I had angry new scars and bruises, so many bruises, from iv's and blood draws, and I was obviously in pain. Looking at the pictures, I am remembering how I felt, angry and scared, isolated, even though my loved ones never left me alone, frustrated and sad. I was unable to communicate in any way except by typing notes out on my cell phone and that was a huge part of my isolation and frustration.


So I look back on those pictures now not with fear and anger, but with thanks and love. Sure, I'm not exactly where I want to be in my recovery. But I am sure as hell not lying in a hospital bed attached to tubes and monitors. My speech isn't as clear as I would like it to be, but I can speak! I can tell my children that I love them (or yell at them when they need that too!) and laugh and answer questions without having to have my cell phone in hand to type it out. My bruises have faded, my scars I wear proudly as badges of honor because damnit, I have earned them, my battle scars. I am living my life. It's a different life right now, one that moves a little slower and requires a lot more rest and care. But different is okay. I realize that things are never going to be the same. They can't be. I am irrevocably changed, inside and out. Forgive me the cliché, but I feel like I have spent the last eight months in a cocoon and I am just about ready to let the butterfly out.


I think the real difference between the me now and the me in those pictures is that I am hopeful. Eight months ago, I just wanted to get out of the hospital, to get home. I couldn't look much further that that in those first few days because it was just too scary. Not that things aren't scary now. Trust me, they are. But I am stronger now, making plans and goals, looking forward. I might not see all those plans to fruition, might not realize all my goals, but that's okay. The fun is in the trying. I will never forget those days in the hospital, the days before my surgery when it was all looming ahead of me, the day of my diagnosis when my world crumbled around me. But they aren't my every waking thought and breath. They are becoming a part of my history. And I am glad to leave my history in the past.



Somehow these posts always end up longer than I planned, and seem to meander away from where I start, but if you are still here and still reading, thank you. I have gotten a lot of great feedback about my posts, but now I have a favor to ask. There is not a lot out there written by oral cancer patients, yet everyone I know seems to know someone with head or neck cancer of some sort. Please share my blog with anyone you think might be interested (or even people who won't, who knows, they might like it!) I am looking forward to connecting with other cancer patients and survivors through this blog. Thanks mucho!


As always...
Love and sparkles to you all,
Gayle