Tuesday, July 7, 2009

What I've been up to for the past 2 years....

I've hesitated to start a blog, but I guess that's what this is. I wanted to write some of my thoughts and medical updates so that others can see them without sending out an announcement to the world that seems like I'm fishing for some kind of pity.

I was original diagnosed with Stage IIB breast cancer on August 17, 2007. I was in the middle of training for the Chicago Marathon and had already done my 18 mile training run. I felt fine. I had found a lump on my right breast in the shower on August 4. A mammogram, ultrasound, and biopsy confirmed what I never thought possible with no family history of breast cancer -- that it was malignant. I opted for a bilateral mastectomy with tissue expanders which was done September 1, 2007. Little did I know that the battle had really just begun. The recovery from surgery was horrible. I felt like someone had run over my chest with a truck.
I was injected with saline (I think) several times to stretch my skin. In the meantime, I had 6 rounds of chemo (TAC) every 3 weeks. That was difficult but survivable. No vomiting! Just lots of yucky nausea. In November 2007, I had to have a revision to my plastic surgery because one of the expanders was coming out of the suture. Again, just the beginning.... I also had to have my port-o-catah stripped because it closed up and could not be accessed during chemo. That involved the radiologist going through a vein in my inner thigh?!

The adriamycin they give some breast cancer patients for chemo has to be administered through a port because if they go into your arm, you may lose the arm b/c the stuff is so toxic. The nurses administer it while wearing haz mat gear. Real nice.

I finished chemo in January 2008. Then, I started about 30 rounds of radiation. I hated radiation. I was tired, I mean REALLY tired by the end. Through all these treatments I managed to work and continue handling the books for our growing law practice. Add the kids and hubby to that and POOPED!

I got my "permanent" silicon implants in May 2008. All was well we thought...

In April 2008 I developed a staph infection. I was hospitalized one weekend and put on IV antibiotics which I got to bring home as a souvenir. So great. They didn't give me enough, however, and I ended up back in the hospital with another staph infection in June 2008. They removed my right implant. Permanently. I left the hospital and went to the store where you get to pick out your removable silicon breast. Not a good thing for swimsuit season.

Beginning in April 2008, I noticed bone pain in my ribs on my right side. The pain was constant but not debilitating. Geoff and I went to Dana Farber Cancer Institute in Boston in August 2008 where I met Dr. Eric Winer. I had a bad feeling about the rib pain but everyone assured me that I was fine and that it was highly unlikely to be a bone metastasis. Dr. Winer verified that my journey with breast cancer has been unusually difficult. Duh!

By December 2008, the bone pain remained. I went to Boston for a CT and bone scan, which revealed all kinds of issues but none suspected to be cancer. Dr. Winer sent me home with an order to take anti-inflammatories for the bone pain and to check back.

The other shoe dropped in May 2009. A CT and bone scan revealed probable bone mets on my L3 and possibly L1 vertebrae. A bone biopsy, which consisted of a radiologist hammering a needle into my vertebrae L3 (who knew how much fun it is to hear someone hammering into your bones!), revealed that it is metastatic breast cancer. So, now I have stage IV breast cancer. That means that it is treatable but not curable. I will be traveling to Boston every 2 months for bisphosphonate (probably Zometa) treatments. My ovaries were removed on June 19, 2009. Didn't need them anyway! I am convinced that I have cancer all over my ribs, sternum, spine and hips because of all of the bone pain I have in those areas. Dr. Winer has said that it doesn't really matter where else the cancer is (bone-wise) because the treatment would be the same.

For now, I'm just trying to live my life. I am working, walking, and doing pilates and light yoga regularly. No more marathons. I've learned that all those things that used to be so important to me such as running, travel, and work are not so important. What matters most is my family and appreciating every day that I can spend with them. Sometimes I wish I knew how long I will live. I'd like to go to Europe while I'm still feeling good but also want to save $ so that my family can have less debt when I'm gone. But I don't suppose it matters much anyway. It's all about living in the present moment and savoring the life God has blessed me with. I'm not afraid of dying, but I'm afraid of enduring a long and painful illness. I'm afraid of not being able to walk or take care of my kids. I'm afraid of not being able to provide for my family financially and of being a burden. But, somehow, I need to trust that God will take care of all of this even though it seems impossible. I hope that my battle will somehow help others, even if I am not leading marches or raising millions of dollars for cancer research. I hope that my legacy is a good one. Thank God for today!!

I'll post another update after my first Zometa treatment in August. If you're still reading this, that is ;)

5 comments:

  1. Hi Sofie! Thanks for posting this and I hope you will keep updating as you can. Wish I could think of something witty and fantastic to say, but just want you to know I think you are a true inspiration, who will leave a fabulous legacy...but you have a loooooonnnnnnnggggggg time to work on that : )
    xxoo
    Your sister in the fight,
    Tanya

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  2. Sofie,
    Thanks so much for posting this, it makes my own "battles" so small in comparison. God uses people in mysterious ways, and you have made me feel like life is too important to let the little things get you down. I am so sad to hear you have gone through all of these issues, I wish I could have helped you before, and I am available to help with whatever you might need now. Like I said before, I can help with shots, IV therapy, wound care, etc. I enjoy all of that much better than cooking!! ;=) Please know that you are in my thoughts and prayers, and I shed a few tears as well reading this.... You have a great Dr. in Boston, he has a wonderful reputation and can provide you with the best care. There are great strides in conquering breast cancer, and prolonging life for MANY years. THIS TRULY SUCKS!!!!!!!, but I have great hope that our little pink ladies group will be dining together as little old ladies. I'm not too far from that now.... God bless you and your family, Sofie.
    Gina McKim

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  3. As I reread my blog, I realized that it sounded somewhat depressing. I did not mean to suggest that I am getting ready to bite the big one -- I do not believe that by any means. But, I'm not Lance Armstrong either and don't expect to be setting world records in athletics. This is mostly a vent to the world, it's just a little revealing in doing so, sharing my most intimate thoughts and worries.

    Thanks for all the comments though, everyone loves feeling loved:)

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  4. You sound very determined, I don't think depressing! Just sucks you have to deal with this so of course those of us who care are going to be bummed about that...but your attitude is FAR from depressing. Lance is cool and all, but you are Sofie! I bet he's not nearly as fun to drink wine with.

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  5. It's so sad that it takes others misfortunes for us to put things in to perspective(and you thought I was not compassionate).I will plan on seeing you at the studio for a looooooooong time to come.

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