Finding A Purpose

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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!

Reality Check

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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.

Back To My Fashion Roots

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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…

Get Dressed.

Mother’s Gratitude

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Mother, Cancer, Teenager, these three things should never go together.

My teenaged daughter was just 15 when she heard her mother had a last stage cancer, a time when most teens are just figuring out who they are and are pulling away from their folks.

My heart hurt for her the most.  Already a mother to two son’s 7 and 10 years old when she was born, they were young adults already navigating the world and in my mind they would be ok.  I had done my job and all of their teenage angst was long gone and they had made this mom proud and they knew it.

I am overwhelmed with gratitude everyday that I am still here to send my sweet daughter out into the world and watch her become everything she wants to show her mother she can be.

Time with her is what I am most grateful for.  To work out the issues in our Mother/Daughter relationship, to remind her that this time is about her, not me and mostly to let her know how proud I am of the young lady she is turning into.

I am not sure I would be the mother I am today if I had not had cancer for it has made me speed up the things I thought could wait, say the things I might not of said, forgive and ask for forgiveness for what might have been brushed under the parental rug and love my children in a way they will have enough of it for their lifetime.

And I am grateful.

The Tongue, Really?

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It’s been almost two months since I began a new chemo regimen of Velcade shots to the tummy twice monthly.

I was so grateful to get off the other one that I often tell myself any new side effects are surely better, until a few days ago when my tongue began looking like it’s been put through a meat grinder.

Chemo just doesn’t discriminate between destroying the good parts along with the bad and it’s such a challenge picking which parts you care most about.

Now I’m sure my husband wouldn’t mind if I was rendered mute, but I just like talking too much to not try battling this.  Today I went on a prescription mouth rinse that I’m hoping has me gabbing again soon without a speech impediment and will just numb the whole darn thing.

I can often be found sulking and feeling sorry for myself when I’m alone, because I really hate all these ailments that feel like they wouldn’t be happening without having to be in treatment.  So please know you are not alone in having these same kinds of feelings.  Go ahead and feel away!

Yes I am grateful to be alive, in remission and getting dressed, but the tongue, REALLY?

Humor And Cancer

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Is there really humor in cancer?

I happen to think so, especially if you make friends with other cancer patients who talk openly about all the dirty details about treating it.

I have made such friends and one of them thought it might be a good idea to make this Fashionista a designer adult diaper, because chemo doesn’t discriminate what end it would like to exit your body.  We found humor in this fact.

It is so important to find these kinds of friends, the ones who have decided to laugh at the absurdity of it all right along with you.

And while I’m very lucky to not have to rely on adult diapers, I am so blessed to have friends who would laugh along with me if I did and it would be in a designer one.

 Connect with other warriors, check the resources where you are treated, join a group, join online chats, whatever works for you, but find your cancer friends!  The ones you can cry with, but laugh just as hard when needed.

Google Alert

I made the mistake I promised myself years ago that I would never do again, I went on a medical google search.

I started a new chemo treatment called Velcade and being one who does not ask many questions or hears information the way one should, I’m probably looking around at shoes (one nurse had on a really cute pair), I thought I heard something about the drug causing anxiety.

The evening after I had my last treatment, I began to experience my heart pounding and I felt so anxious.  So what’s a girl to do?  I went on an internet search Velcade and anxiety.

Most information comes from discussion groups made up mostly of patient’s spouses or family members and this is what stuck out first, “get off Velcade it killed my dad”!!!   What?  More discussions centered around the neuropathy I was sure to get which had me believing I would in no time be using a walker.

By now my anxiety turned into sadness which then turned into anger that I went on the internet to begin with.

People are rightly upset and devastated about having cancer or watching one of their loved ones suffer with it and the internet is where they find it best to vent.  And boy do they vent.

So my advice to you is, stay off the internet!!!!

You need information, call your doctor.

 I also get some of my best tips from patients I have met personally who not only talk about how bad side effects can be but add in some positive information along with it.

Gonna run, time to goole shoes!