Pages

Thursday, February 21, 2013

Spring - The Big C, Healing, Creating & Moving on with the Business of Life

Foxgloves in my yard last Spring--and a busy bumble bee.
 “Spring is the time of plans and projects.” Leo Tolstoy, Anna Karenina

Even though I live in the beautiful middle of nowhere in St. Augustine, Florida, I wait for Spring just as my family & friends up in the cold north. We have chilly mornings & nights but the days are perfect. It's just knowing that we're still in February that has me looking forward to March & April- true spring here for me.

I now find myself impatient to get on with the business of living--  healing from a stunning diagnosis of the Big "C", planning, creating, making, sewing, learning to quilt & spring cleaning my home! It's been since November that I last posted here. It's been a long winter for me. When I began this blog I promised myself I would stick to creativity and the love for vintage things. I wouldn't get personal, but creativity is personal and life inspires what I create, makes me who I am. So, here goes...just this once.

Getting to know my family & me-



Me with my husband & twin boys at our oldest son's wedding last year


My oldest son & his beautiful wife on their wedding day at Maymont Gardens

My daughter & twin sons - this was taken at my daughter's place. She & her fiancee live on this beautiful spot on the inlet from the intracoastal waterway & the Matanzas River here in St. Augustine. This was low tide but the views are always so pretty here. When the boys & I visit her, we all just sit outside & love this view.
I am a mother first and foremost and a wife. My life and every breath I take revolves around my children, my husband, my darling dogs and my love for vintage everything. I love my life & love where I live. I am blessed & I am lucky. I have two grown children, my daughter is an ICU nurse & will soon be a nurse practitioner (Proud Mama of all my kids!); my oldest son is an IT specialist and my two youngest are twin boys in middle school. They love music & play several instruments. Illness has fallen on our family in the past few years & very recently. We are still smarting from the sting of it but, we are moving on & happy. One of my young twin sons has a brain angioma and the other one has pediatric Crohn's Disease which is really tough for kids. They are both doing so great. We have spent many nights & days in hospitals, prayed down on our knees in hospital chapels while our son had surgery or procedures, taking them to doctors and just caring for our sons the best we can. It hasn't been all shabby pink roses for us. And, my husband has had to do it all many days on his own with me ill or hopitalized. We have held onto each other and know who our friends are and who loves us. We have turned to our faith more than ever and thank Heaven for everything we have (like our kids, friends, our lives, vintage postcards, sewing, creating, blogs...ha ha!  :-)  We can't thank our friends & older children enough for the help they have given and for caring for our twin sons when we needed their help.


My twin sons & me - a fun side trip to the aquarium during our trip to Cincinnati Children's Hospital last Spring to get a second opinion on treatment for our son who has Crohn's Disease. We were tired here but glad to be somewhere fun that day!
I was recently diagnosed with the big "C" as in cancer as in GIST sarcoma = Gastrointestinal Stromal Tumor. About GIST. It set me back a bit. I had to place my Etsy shop The Joyful Home on hold for a while and couldn't do what I love. But, I didn't wallow in self-pity or even cry...I was angry! I had been ill off and on for 5 years with chronic anemia, hemorrhages, hospitalizations, misdiagnosis, bad, pompous doctors, IV infusions of iron, blood transfusions, countless lab work, tests, scans, 7+ endoscopies, ...all of which never found the tumor until a couple of weeks before Christmas. You get the idea. I am doing really well now but like I said, it was a long winter...

So, on Christmas Day I left my precious family to fly to the big city--me & my little monster tumor all by ourselves. My husband stayed with the boys until he could fly up to NY to be with me. I never leave home. I don't fly. I live in a bubble. It was one of the toughest things I've ever done.

So, on the plane, I met this amazing woman--I think she was an angel. She is a pediatrician (definitely an angel) & we're the same age, with grown kids & such. As the plane taxied out to the runway tears welled up and I just cried. I think because the realization had hit me that I was in for quite a ride (pardon the pun)...I was afraid of leaving my family on this trip; afraid of being sick, not getting better, flying on airplanes, having surgery, everything just overwhelmed me. My new plane buddy was awesome & comforting & when the flight got bumpy we held hands so tight that we had sweaty palms! We held hands pratically the entire flight! Kind of corny (and comical) but sweet, too. We laughed about that and we cried together as she shared her heartbreak of losing her dear son last year & as I shared my story. I mention this because she made me realize I wasn't alone. And, I have felt very alone some days. But, I would be staying with family on Long Island while in NY going through this crazy business so I was going to be ok. My brother & his family were so loving and sweet. They carted my daughter & me to appointments in the big city, fed us, and took great care of us. My beautiful daughter had traveled on Christmas Day to be with her Mom--how sweet is that? It is good to know there still are kind, real people out there & my kids are goodhearted. So, if you ever feel alone, know that I am here for you and you are not alone.


My loyal dogs - the sweetest girls I know! always with me - my other children

The next day I was at Memorial Sloan Kettering Cancer Center to meet with a wonderful doctor, Ronald DeMatteo who specializes in GIST or soft tissue sarcoma. Ronald DeMatteo, MD, FACS. He is a surgical oncologist. I have a ton of respect for Dr. DeMatteo. He is professional, soft spoken, very experienced & educated in GIST, a researcher of sorts with tons of publications on GIST. Doctors like this have worked tirelessly for years to become educated and help people like us. He did my surgery on New Year's Eve Day. He & his team at Sloan Kettering took great care of me. They know their stuff there & hey, they came in to work on a major holiday to help me part ways with my little monster so I am ever so grateful for their caring & expertise. 

I like to pretend that the thing flying out of the patient in this silly cartoon is my little monster tumor--good riddance! I actually donated little monster to Sloan Kettering's research lab so hopefully they will find a cure for this stuff.
You can read here about GIST: GIST Support International or Cancer.net - GIST Cancer Sarcomas are rare cancers or "orphan cancers" as they are called.Only about 1% of the population is diagnosed with GIST but I suspect there are a lot more people running around with GIST and have been misdiagnosed like I was. I want to help bring awareness about GIST so others may not go through what people like me have, hence why I chose to include this in my blog. I don't think there will be a lot of 10K runs, wristbands or Kumbayah comraderie for us GIST patients until there's more awareness but there are people out there fighting the good fight & fundraising like Tania Stutman with the GIST Cancer Research Fund.

I feel better than I have in 5 years since they got this thing out of me. I am looking forward to "normal". The treatment for GIST is surgery when possible, which I had with great success. Then there's the drug Gleevec. GIST does not respond to conventional chemotherapy nor radiation. I am still awaiting another opinion on whether or not I will take Gleevec. Even though I know the recurrance rate for GIST can be fairly high, I am moving on and won't let this monster keep me from what I love anymore. I may be one of the lucky ones. So, I will hope & pray & I will get back to the business of living, planning, creating, spring cleaning and doing what I love.

NOTE OF HEARTFELT THANKS TO TANIA STUTMAN, Founder of GIST Cancer Research Fund. Read about Tania and all the good that she has done to help people with GIST - Tania Stutman's Story  and  GIST Cancer Research Fund. Tania has been a great source of support, information & education for me. Tania is an angel. She referred me to Dr. DeMatteo & she "gets it". Tania is a well of strength, love & knowledge--a rock. Love & blessings to you Tania.

Thanks from the heart also to Bill Smith, GIST survivor for putting me in touch with Tania and for lending your "earmail" (ear via email)....You have been so kind & a great source of support & information, too! Love & blessings to you, too Bill. Bill Smith - GIST survivor - BiziBill.com
Thank you for being here everyone~
Love,
Kimberly
My first quilt - A Shabby Cottage Quilt - week 2 - cutting, measuring & planning the quilt
Please come back very soon to check out my first quilt. I am very inspired by beautiful quilts so I enrolled in a quilting class recently--these are wild times for me ;-) Stay tuned dear friends...












2 comments:

  1. OH Kimberly, you have certainly been through some very hard things lately...which you have faced with hope, spirit, and grace. I am glad you have finally discovered what was going on, and the surgery to remove it is behind you. I am praying that you will feel well now! I am glad your sons are doing well now, too...I know from experience, how hard it is to see your children seriously ill. You are embracing the future and the wild times in a way that is inspirational! Looking forward to seeing more of your quilt! Thank you so much for your sweet comment on my blog today...it brought a smile to my face, and made my day!

    ReplyDelete
    Replies
    1. Thank you Linda for taking the time here. I look forward to your blog posts each day. They're so gorgeous. Your work is beautiful and you inspire me.

      Heartfelt thanks & blessings,
      Kimberly

      Delete