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.
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!
There’s a day each one of us cancer patients dreads…
Bone Marrow Biopsy Day!
A procedure where they drill down into your hip bone to retrieve marrow and possibly a fragment of bone for testing to see if there are any cancer cells creeping around in your system.
I’ve had too many to count. Some I’ve chosen to be knocked out for, some with oral drugs, but all with the same anxiety that seems to creep up on me when I’m due for one.
I’m not sure if all my anxiety is from the prospect of having a drill penetrate my bone or that in a few weeks I’ll have the results.
City Of Hope now has the technology to test all the way to the molecule, so in a few weeks I will know if the 19 molecules out of a million cells I was told I had before will have been killed off by the amount of chemo I’ve been taking.
I use to wish away weeks to get to what I wanted before, I try not to do that anymore as each week is so precious to me now.
So while it’s the waiting that is the hardest part right now, I’m going to enjoy each day, keep a positive attitude and maybe only call a few times this week to see if the results are in.
I’ve said it before and I’ll say it again, when you get cancer in your family there should be a pass for all other medical problems.
This isn’t working out so well for me because 30 years ago I decided to marry a man so unlike myself, who’s motto is “Go Big or Go Home” and he’s passed his dare devil ways unto my children. They love sports with wheels, engines, mountains and travel that takes them to places I’ve never dreamt of going.
This handsome devil in the picture is my son Hunter, who rides his BMX bike everyday after work with the pros and challenges himself like he’s partaking in their next big tournament. Last week had him landing on his stomach and rupturing his spleen.
Just like their father, they have the will and strength to brush off these injuries and make it their mission to get back to adventure.
Mom here as always played it safe, lectured it’s time to quit and has tried any way I can to guilt them into taking up chess.
I know there has to be a lesson in this somewhere, because Ms Safe here is the one who got cancer doing nothing. I’m hoping they now see, that I too am forging ahead with what life is throwing at me and I don’t even have a great tale to tell about what got me on this adventure to begin with.
Hunter is going to make a full recovery, Mom’s emotions are trying to do so too.
I’m beginning to let go of the bubble I’d like the whole family to be in. We all want to live forever and we know how that goes, so maybe the Zip Line isn’t such a bad idea on our next family vacation.
While I’d like for everyone to just make life about me, I do believe the only where that is going to happen is on this blog.
I never understood the pain couples who were having trouble conceiving had. Many times in articles they would state how hard it was being happy for their friends who were having babies. And the baby showers, those poor women would be so sad.
But I’m beginning to understand.
It seems everywhere I look, my age group is becoming grandparents. The pictures and tales and happiness and love, you get my drift.
So you’re probably wondering, where’s my pain in this? I’m so frightened I won’t live to see my grandchildren.
Oh such the dreamer I am and grandkids, well I’ve been dreaming about them since my 28 year old had his first date.
I do not foresee any grandkids in the near future as my 18 year old is the only child with a steady boyfriend (please don’t do Mommy any favors) and my two sons are relishing their bachelor statuses.
And I’ve been sad.
I hate this part of cancer. The part that makes you stop believing in your dreams.
So I decided to make my dreams come true, kinda like those parents who were childless. Adoption!!!!!
The papers are signed and we are awaiting approval. Our grandchild is not what I pictured, he’s a little furry with whiskers, but we will love him just the same. My sweet niece is fostering him for a few more weeks before hopefully he can come home with us.
And I have a new dream now.
One day I will introduce Frank Sinatra adopted grandcat to all my grandkids with two legs and hopefully no whiskers.
It always takes me a couple of weeks to recover from a set back, not just physically but emotionally too.
This past week has seen me rather grouchy, feeling isolated, feeling a lot of self pity and a whole lot of thinking about cancer.
Oh and lets not forget to mention manic. I’ve run more nonsense errands, cleaned more deep corners and purchased way too much in what I believe to be an effort to once again take control of my life. Kind of a “see look what I can do cancer, you can’t keep me down with pneumonia and don’t even think about rearing your ugly head”.
I needed a purpose to the madness again and this came in the form of speaking to Spectrum Pharmaceuticals, the company that manufactures the cancer drug that made my transplant possible.
It is so wonderful that the medical community wants to hear from us patients, when so often our voice is lost in trying to save our lives.
I felt so empowered sharing what I and many others patients go through in having a transplant and the company was so gracious wanting to put a face on the people they work endlessly to save.
So maybe there is a purpose to the madness, I’m beginning to feel this way again.
There might be a few more pity party shopping deliveries coming to my door, but the only nonsense errands I’ll be running in the next week is returning them. Ok, maybe I’ll keep a few!
There are times in the journey I call reality checks, this past week was one of those times.
I was diagnosed with a respiratory virus that effects infants called RSV which led to pneumonia. Reality check…I really do have a weak and immature immune system.
Five days in the hospital receiving IV antibiotics in a unit reserved for us cancer patients with respiratory issues. Reality check…I might not die from cancer but from all the complications from being treated for it.
There was so much reality during this stay that I felt a complete meltdown coming on. These setbacks can take on as big of an emotional toll on your body as the physical one that caused it.
My family and friends who love me, like to list out the realities I’m already overwhelmed with. You should not travel again, you need to take it easy, you don’t listen to your body, I will be monitoring your every move. Somehow the only thing I’m hearing is, THIS IS YOUR FAULT!!!!!
Please be aware the ones that love us cancer patients, we are living everyday to escape our reality. If not going on that trip can spare us a little more time, no thanks. Most of us need to keep moving or we’d be giving in to the one thing cancer loves the most, FEAR!
So while I’ve had many reality checks in the past week, the most important has occurred since I’ve been home, the reality that I’m pretty darn strong, this did not break me and I’m getting dressed.
I just returned home from a trip to my birthplace New Jersey with my mom and sister. We stayed with my youngest sister and her family.
I had one mission on this trip and that was to see my two Aunts who inspired me from a very young age to love fashion.
My mother always sacrificed and made sure all four of her daughters were presentable every time we left our home, but my Aunts were my fashion idols.
No matter what events were occurring in their lives, they were always dressed to perfection and I could never get enough of how cool I thought and still think they are.
They will probably never know how this little girl inside me wanted so badly to conduct her own life the same way. Getting dressed for what the day held.
Cancer has made me a wee sentimental and have a yearning to express what other’s have meant to me in my life. It also makes me believe at times that any day something could change in my health and it might be the last time we are together.
I hope this is not true and I get to witness how they wear their orthopedic shoes with flair, because this fashionista wants to follow in their footsteps.
So for now, I will continue to do what my two sassy Aunts taught me a long time ago…