No Jogging Suits For Me!

In April of 2015, I lie in a hospital bed with a body that was failing me.  I was diagnosed with Multiple Myeloma, bone marrow blood cancer.

By the time I came home to begin my cancer journey of weekly chemo and steroid treatments, which would lead up to a Stem Cell Transplant, I went from an active 54 year old woman to one who was bloated, hunched over, in pain and could barely walk.

I love fashion!  It’s not the event, but what I’m going to wear that has always excited me and cancer was trying to steal my mojo!  I was not going to fight back wearing a jogging suit!

So here began my cancer fashion journey, getting up everyday and fighting my way back by presenting myself the way that made me feel like me and to shout out to the world, F.U. Cancer!!!!

Here is my journey of fighting cancer, one outfit at a time.

Stuck

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A Cancer Patient

Donna

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.

I Had A Stalker

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I had a stalker and his name is Cancer.

There are times I felt him around every corner.

He liked to paralyze me with the fear that he was going to kill me.  He’d already beaten me down and made me aware of what it would feel like when he finally got me.

And boy was he tricky.

Sometimes I had nothing to worry about but I felt him stalking anyway because I started thinking about him.

I’m almost three years in remission and I’m now watching some of my fellow Multiple Myeloma Warriors fall prey to his ways.

So I decided to face him again.

 I told him how much he’s changed some things in my life for the better.  How many incredible warriors I’ve met and how many wonderful friendships have been formed.  I let him know that no matter how fearful he makes me, my heart just keeps growing and I know I am a better person because of him.  And those Warriors who have seen him return with a vengeance, they encourage me with their strength and make me see that everyday counts.  I let him know that I’d be ok if he came around from time to time, because I’m learning to reach out when I’m scared and others have let me know they understand and will walk beside me in my fears.

And then he disappeared.

How Do You Do It?

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A dear Multiple Myeloma friend passed this along to me for she knows we are often asked this very question as though we are special and have the secret to continuing life after cancer.

Now I do believe this friend might have angel wings, because I wonder myself how she does it.

 I often think when I see people with challenges that I’ve not or will never experience in my own life, what keeps them going with convictions, strengths and the will to inspire others, often times with love in their hearts and encouragement to share.

And then I had my answer.

There is no secret of how you do it, but accepting you must.

You discover parts of yourself that need to become stronger or ones you never knew you had.

I’m strong willed.

I love.

I want to give.

I want to live.

I want to stay positive.

I can handle this.

AND I MUST.

It’s All About Family

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I just returned home from an adventure that included 17 members of my family gathering for a remarkable 5 days in Oakley, Utah on a ranch.

Everyday included adventures such as white water rafting, skeet shooting, horseback riding and just about anything the 17 of us could think of doing while gathering at Twilight Moon Ranch.

I relished every moment with my own family, so happy that my three children could be together with their grandparents, aunts, uncles and cousins, playing like they did when they were younger.

And there was no talk of cancer.

I was free, not from chemo and side effects, but from thinking about it.

Sure there was some long naps and some queasy moments, but not once did I think I was a weak link, nor did anyone else.

We hadn’t even left when talk of where our next adventure would be, because for all of us, no matter what each one of us is going through…

It’s all about family.

It really does see us through.

 

The Results Are In

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It only took, a week and a half, two phone calls, a text, a ton of worry and one visit to my Doctor to finally get the results of my Bone Marrow Biopsy.

The new test can track all the way to residual sequences detected per million nucleated cells and I have 2,799 lingering F***ers  per million cells still residing somewhere in my body.

This new test concludes that I have not achieved remission, but hold your horses, that’s not what the standard test reveals, so we are going with that.

My Doctor along with other clinicians still do not know what to do with these new detailed test except to up our chemo doses and hope that in 6 months I will have another Bone Marrow Biopsy that will be clear.

And I am relieved.

I’d like to hear that no cancer can be detected, but I am one of the lucky ones.  My body has responded to a Stem Cell Transplant and being on a chemo maintenance program, so there is so much to be grateful for.

I just refuse to give those residual F***ers any more of my energy, instead focusing on what a miracle the rest of my good cells are.

So here’s to hope for a great future and I’m thinking a new pair of shoes, to celebrate that this fashionista still has many new outfits ahead!