Bon Voyage

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It all started three years ago when I promised my family that we would celebrate my one year remission by going on a trip for Christmas.  Tulum, Mexico became our destination and my goal throughout the year to get there.

The following year we celebrated two years and returned.

This year we return to celebrate each other.

I am going for the first time in active treatment, not maintenance.  The side effects, some fear of being out of the country and not bringing my A game can not stop me.  This trip is what I will not let cancer take from me.  Being all together, especially when all three children live out of the home, one is flying in from Tel Aviv, far out weighs any negative thoughts and fears.

What this trip is becoming is our way to celebrate the closeness, no matter what is happening in our lives, that we feel for each other and that we got another year. Remission or no remission.

 We understand now that life can be fragile and no matter how much we pretended we did before, we do now.  I wish we all could of stayed blissfully ignorant of how fast life can change, but something happened along the way, it has made us become a family who doesn’t take advantage of time spent together, we don’t hold back and I really like it this way.

All year we squeal at the thought that Tulum will come in December.  It remains my goal to get there and I like goals.

Every year I leave cancer at the gate.  I do this week my way, which means a few broken rules and a reckless abandon that I do not feel throughout the year.  Mom will  embarrass you, I’m thinking karaoke or maybe the mom dance that they’ll all roll their obviously blind eyes to.

 

So here’s to year three, too many margaritas, loads of laughs, SPF 150, food til we burst our cotton pants and a deep love and respect we share with each other.

I wish all of you the Happiest of Holidays, and I’ll drink a toast on your behave.

Bon Voyage.

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Words

 

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I have tried to start a blog post about 25 times in the past month, but I just had too much on my mind and couldn’t find the right words to say it.

I had a plan, stay in remission for 10-15 years.  I came up with this idea after asking my doctor numerous times how long some of her patients had stayed in remission after stem cell transplants.  Being the competitive patient I am, I was going to beat that.

Falling out of remission put such a kink in my plan I was devastated beyond what I could really express to those who love and support me. And I was lonely.  I have put my journey out in the public, but I don’t want to express at times what a drag it can be, so I choose to show it through clothing.

There are fears all of us cancer patients hide deep inside, death, pain, disfigurement and leaving our loved ones, but the one I had never let creep up into the forefront was the feeling I just did not want to fight anymore.

 I think I’m done.

I tried to make it go away, but 3 and half years on treatment and hearing I’d have to add more to hopefully live with its new side effects for a few more, just seemed too much.  I have an incurable cancer and staying in treatment is what will buy me years, but how do I want to live those?

 NOT ON DOCTOR’S ORDERS, I stopped treatment for 4 weeks to live my life and get a taste of what that would be like. Oh it was fun.  But then something happened along the way.  Cancer markers started rising, CAT scan showing active lesions on bones.  This monster is going to get control of me.

Suddenly every ache and pain was cancer.  I was certain my kidneys were failing, I’ve obsessively checked every urination.  Certain my back was going to break I became so stressed out that I rolled on a massager every night in hopes that it was just a pulled muscle.

I am NOT DONE!

Was it really me who thought I was going to tell my doctor that new treatments should begin after the holidays?  During my last appointment those silly words didn’t have a chance of leaving my mouth.

 I strutted into my first 10 hour Immunotherapy treatment a few days ago in the cutest leisure wear, with a positive attitude which was certainly due because of feeling and  releasing all the negative ones.

So far I’m still standing, I know there will be more to come, but I’m imagining it’s all the bad cells being killed off and I’m so ready for them to be gone.

My heart has played an enormous roll in my cancer journey, for it is where I keep all my love for you and where all yours goes.

But my mind has played the most important one.

It’s best on this journey to get the words out of it.

 

Be Authentic

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A very wise woman told me at the beginning of my journey to be authentic.

As a mom, my job has always been to protect my children.  Sometimes, I took that role a little too far and sugar coated hurt and disappointment that needed to be experienced.  But sugar coating a cancer diagnosis that would be a life long effort to stay alive from was getting exhausting.

There are three young adult children on this journey and from the beginning I have led the cheerleading squad, at the same time trying to figure out how to be honest, but was I?

I don’t think I have my own head wrapped around it all, so when one of the squad wants to share their grief on the matter, there are times it is just too overwhelming, because I am the cause of their concern.  I don’t think I am really listening, instead trying to think up good responses to keep them motivated and away from any pain.

 Let’s be authentic here, cancer treatment and all the complications that come with it do not make a cute head cheerleader at times.  Mom just doesn’t feel well somedays and that can be scary because Mom always takes the time to look like she is.  I was having a hard time letting them in when I was down, going as far as to keep them away from my hospital stays, because I can’t bear them to see me ill.

I am still trying to understand and instill that wise woman’s words into my life.  I’ve come to realize she knew me too well and maybe wasn’t just talking about cancer. Oh the ways I’ve always made bad things look pretty.   Maybe she wanted ME to be more authentic.  Let the kids, hubby, friends and family in when times don’t look so pretty.  And really, how unfair of me to not give my children the chance to show me their strengths.

So I started to listen….

My only daughter, “Mom, I am so filled with anxiety that you might not be here for my wedding or children and I can’t picture my life without you in it.”

A son, “Mom, are you keeping a secret that maybe you know how long you have to live and you’re not telling us?”

To my daughter, I am devastated at that thought too, so I understand. Let’s own that hurt, but I am grateful to have this time to watch you become strong enough to face whatever adversity you have in your life.  Please come to me when these feelings become overwhelming for you so we can cry together.  But let’s not ever give up hope because we don’t know what the future will bring.  Can we promise each other to do our best in getting there?  Mom will keep fighting, promise.

To my son, sorry I was cheering so loud you thought I was covering up my expiration date.  I do not know that, but if I did, I promise I would never lie to you.  I’m sorry you had to go around thinking that I did.  I am so encouraged in the way new treatments are coming along that I might not ever hear those words from my Doctor.

Going forward kids, I’m going to try and find my authentic self, she might look like a mess somedays, but I will let you be the part the makes me feel better.

 I might just find out that all three of you are strong enough to handle your fears and  manage them, without Mom sprinkling sugar or doing a leg kick in the air.  (I’m known for those mom kicks).

I don’t know if that wise woman will ever know, but her words went far beyond cancer for me.

xo

 

Cancer Is Not Like The Movies

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MOVIE VERSION

Doctor:  Sit down Donna, we have some bad news for you.  So sorry but your cancer has returned.  Here’s some tissues.  We are going to do everything in our power to get you back into remission.

Me:  I understand everything you are saying and I will do whatever it takes.  A hug and kiss and many I love you’s from hubby.

REALITY

Doctor:  Your light chains are going up, we are going to start a new treatment today.

Me:  Tears, f-bombs, what does this mean????  And a hubby looking just as daze and confused.

This past six weeks has been filled with many treatment side effects and an overall confusion I have not experienced since the beginning of my cancer journey.

This is not because of my Doctor, for she is brilliant, her job is to keep me alive.  But us cancer patients speak our own language.  We speak about numbers, side effects and remission.

Am I in remission?  Are you in remission?  What’s the plan?  What’s your plan?

I went to my Doctor’s appointment yesterday armed with a with pen, paper and numerous questions.

I am not in remission.

I am stable.

I will not stay on this current treatment because of its side effects.

We have a plan.

I will get back to remission.

Starting in January, I will begin Immunotherapy.  A range of these therapies help the immune system attack cancer and have an impact greater than anything doctor’s have seen in battling Multiple Myeloma.  They have also shown to expand patient’s survival rate.

Sign me up.

Cancer is not like the movies, you don’t get 32 takes to make every cancer scenario right, but you can surly learn from the first 31.

I’m learning I need a plan to conquer, understanding when I’m confused and cancer friends to balance it all out.

I think I’m ready for my close up.

Stuck

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A Cancer Patient

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Donna A Cancer Patient

This past week after my hospitalization has found me stuck.  Can you really be hit again and again with the reality of your situation and not finally just accept it?

Every time I have one of these setbacks the heaviness of it all weighs me down and everything I know to be true, that my whole life has lead me here to use the talents I have to inspire others, I decide I just want to be Donna again.

Three years mentoring, The Cancer Fashionista, media, weekly visits to City Of Hope and somewhere along the way strutting my fashionista self, I forget that I am an actual cancer patient.  The armor of getting dressed and helping others, shields the reality of it for me and then a wake up call.

I know I am no different than anyone else out there suffering, it’s not the why me I question, but can I see the list and make my own decision, because this one just seems a little too much right now.

So I did what is so very important to do on this road, I met with my fellow Multiple Myeloma Warrior and I talked and talked and talked.  We end everyone of these times together acknowledging how much cancer sucks, but boy is our friendship such a blessing, one that would not of occurred without being on the same path.

And I decided it was way overdue to be what I should be…

Me.

I am mom, friend, sister, daughter, wife and many things in between.

My name is Donna and I am a cancer patient.

My Love/Hate Relationship With Treatment

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There is no doubt in my mind that treatment saved my life, yet at the same time I question if it is also taking it.

I think most of us long term in treatment patients can attest to our love/hate relationship with it.

This past week was a wake up call to how something so invaluable in keeping me in remission has side effects that can also debilitate me.

After going on a much stronger regimen of chemo and steroids I was hit with a backache so severe it sent me to the emergency room where I was first informed through an X-ray that there was a possible leak in my intestine, possibly from it being weakened from steroids.

I was prepped for surgery and was informed after a CAT scan that no hole could be detected, but my hate for steroids and all other treatments took a hold of me and I started to question if I ever wanted to be on them again.

Now days away and home from this experience, I can now see the wake up call that was needed in my treatment journey.

I had become lazy, in denial and so not productive in my own care.  I did not ask questions or raise concerns when my body did not feel right.

The truth is, I need treatment and I have to find a balance between all the medicine that is given, back pain, here’s a pain killer, constipated, here’s some Miralax and find a balance between how I can use alternative healthier ways to deal with side effects.

Some of my best advice comes from other patients and I’m now listening.

There is a gratitude that can’t be denied.  I am so fortunate to have treatments that saved me from cancer and added years that would not of been possible a very short time ago.  I just can’t forget my own treatments and voice and remember that I too have control over what remedies work for me away from the medicine cabinet.

So here’s to future colonics,  a big list of questions for my doctor and a big wake up call that I’m just as important in my own care as the medical experts.

 

I Might Be A Psychic

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Doom, gloom, anxiety and a stalker in the shadows, I just could not shake the feelings I’ve been having over the past few weeks.

I thought today would put those feelings to rest, but as I walked what seemed like a plank into my doctor’s appointment to find out the results of my labs, I was confronted with those fears coming true.

“Your counts are elevated”, I think that’s what she said, because I went into an epic meltdown letting every bad feeling come to the surface.

My mind had me believing that I should run, tell my doctor that I’m done and ruin what little reputation I had left because of the way I was behaving, I think a few F bombs came out.

I stood up ready for my dramatic exit (my poor husband trying to hear the plan with a look of shear sadness across his face) and I said “I’ll do what’s needed to stay in remission”.

I’m not sure where that came from, the parking lot and a quick get a way seemed so much more inviting and a tantrum while doing it seemed even better.

But I do want to stay in remission and I listened to the plan.  Weekly steroids, a new weekly chemo added unto my existing one and a very good chance those labs will be normal again.

As I walked out the door heading towards infusion with tissues flying from my bag, a boy not small enough to be in a stroller with a mask on came strolling towards me.  He and his parents are my heroes.

I am the lucky one.

Some bad side effects to deal with, for a chance at remission the warriors I encounter would surely trade.

I discovered that my $9.99 minute psychic phone calls might not be such a good idea, because I’m not a psychic but a gal who was feeling the reality of Multiple Myeloma. The MM road is bumpy and I am not immune.

I am the lucky one.