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  1. Pingback: Added a Page | Aquarius vs. Cancer

  2. Carolyn says:

    Hi Kimmy !
    Finally someone I can relate to , someone who gets it !! My name is Carolyn and I live in Melbourne ,Aust. I was diagnosed with NSCLC in Oct 2012 . I am 39 years old with to beautiful boys, Tyler 5 and Cooper nearly 3 . I was three weeks out from running a half marathon when I got pneumonia and they discovered this hidious disease . Amazing when I led a very healthy ,active lifestyle. After 4 cycles of chemo , I’m now on the oral chemo criizotonib . Chemo was horrid giving me the most horrendous side effects but so far so good on the oral . I’ve been reading each of your monthly blogs over the past few nights and can’t believe how much I can relate to your thoughts and feelings . A cousin of mine who also read your blog said she felt like I was writing it !
    I’m only half way thru your monthly updates cause I’m reading some over and over again, holding on to so much of what you are sharing , it gives me a lot of hope and reassures me that everything I’m thinking and feeling is ok . I look forward to your updates and thank you so much for giving me the inspiration I need to press on each day . Hope we can continue to be in touch.

    With hope,
    Carolyn

  3. Kim,

    It was great to meet you @ the Harmony Hill retreat a couple of weeks back. This cancer thing is quite the ride to say the least. The best thing I’ve found to deal with it is to find the blessings that occurred in my life since receiving my diagnosis (March 2008). I was diagnosed @ stage III and turned out to be inoperable. I was given a year or two tops…well, some simple math will tell you otherwise and that the doc’s aren’t God.

    Glad you’re blogging / writing. I find it to be one of the most cathartic things I’ve done since my diagnosis…You have a lot to say and you say it well. I highly recommend you think about writing a book around it…never know what possibilities may appear.

    Best to you and yours,

    Randy

  4. Becki says:

    Kim,

    We don’t know each other, but I have to thank you.

    On 12/31/12 (yep, that put a damper on our NYE party), the unthinkable happened: one of my closest friends was diagnosed with Stage IV oralpharyngeal cancer due to HPV. She was 35.

    2013 was an awful year for her. She had 25% of her tongue removed. Radiation, and one cycle of IV cisplatin that she was unable to continue because of side effects. She was off work for seven months and extremely ill due to the radiation. However, in true Gina Style, she never complained–obviously, in the beginning she would ask why. We all did. Why would this stupid rare virus attack our friend and give her cancer at such a young age?–she was positive, and honestly kept living life more than I do (I’m the hermit of our group). A coworker of mine was baffled when I told her she was going back to work. And I was baffled that she was baffled, why wouldn’t she go back to work?

    I know a lot about cancer. I work in the research pharmacy at Siteman Cancer Center in St. Louis. I see cancer everyday. I knew what a Stage IV diagnosis meant: it had metastasized to her lymph nodes, she would never be in remission. Her cancer was terminal. I kept this to myself; I did not have the heart to tell our friends, our tight knit little group, that we were going to lose the glue that keeps us together. Even though we’re now scattered across the country–Gina being the furthest in San Francisco–all of our yearly parties happened at her parents’ house. How were we going to survive without our glue? So, I let Gina take the reigns and tell it the way she saw it, and finally, in August, 2013, she went back to work with a clear PET scan and positivity on her side. She was in “remission.” She was going to be fine. We all felt the higher purpose of her suffering with this disease was to teach us to live every day like our last. To put in the world nothing but love and positivity. To make people aware of HPV and that our generation–the generation right before the vaccine, Gardasil, came on the market–was at a very high risk. My own personal purpose was to see Gina in the eyes if every patient I talked to, every dose of chemo I mixed.

    Over Christmas she came into town. Like every other holiday season, we all gathered at her parents’ house to exchange gifts and play board games. She was telling us about how her husband had turned 40 and was depressed about it and made a comment that silenced the room: “I’ll be lucky if I make it to 40.” She didn’t say it in a negative way, but in her usual light hearted banter. She and I shared a look, she knew what I knew, of course. She was terminal. When people started talking, “oh, honey! It’s gone! You’re in remission…,” her eyes stayed on mine as she said, “I’m just going by the ‘Five Year Plan’ all the doctors throw at me.” Of course, she knew. And, of course, she wouldn’t sadden anyone or ruin anyone’s holiday by saying what she and I already knew: she wouldn’t live to see 40.

    Friday, 4/24/14, my best friend (who I work with) called me and told me she needed me to come to her desk. I knew from her stern tone something was very, very wrong. I went to her as soon as I could. For some reason I thought her boyfriend was in an accident, or something had happened to one of her parents. But it was Gina. Gina was in the hospital. The ICU. She was in organ failure. The cancer had metastasized to every single vital organ in her body.

    We both had an hour of work left. I went back to my desk with a severe case of ADD and went through the motions of the last hour of my week.

    5:30 came and brought me to a place I never thought my science-minded brain would take me: denial. Her latest PET scan, just before Christmas, was clear. It just couldn’t be happening. Even though I see aggressive progression almost daily, I convinced myself that her husband was overreacting; he must have misunderstood the doctors. He was tired and overwhelmed. I wasn’t going to listen to anyone but Gina’s father, who is always the voice of reason.

    Yesterday, her father delivered the news that made me collapse in ugly sob-screams to the floor. His daughter, one of my best friends, the girl I committed most of my “teenage crimes” with, is dying. She has only days left. Slightly over a year ago, I thought we were receiving the worst news ever. But all hope is gone now, and *that’s* the worst news ever. She is alert, but speaking in a language no one can understand. She’s smiling, but that’s just Gina.

    On this afternoon in St. Louis, with a violent, severe weather system to match the thunderstorms in my heart on the horizon, my friend of 21 years is dying 2000 miles away. If she lives until Friday night, I will be by her side, holding her hand, making sure she’s pain free, making sure she’s not scared. Making sure her parents, who have over the years also become my dear friends, are well taken care of.

    Kim, we don’t know each other. But I want to thank you for putting your story out there and for being so candid about it. I don’t know you, but I love you, I love what you’re doing for lung cancer awareness in this country, I love you for shining a bright light on this evil, heartbreaking disease. I love you because your blog brought me back to reality and told me to get my big girl pants on and do what needs to be done in the last stages of my friend’s life. Thank you for all of these things.

    I wish you years of hope and happiness with your friends and family. Most of all, like the rest of us, I wish cancer didn’t exist at all.

    Again, thank you so much,
    Becki

    • kimmywink says:

      Wow. That is quite a story. I’m lost for words…

      I’m glad you found my blog helpful. I am sorry your life has been touched by lung cancer too.

      Take good care Becki.

  5. Eileen says:

    Thank you for your very inspiring words with us at Genentech today! You are the passion behind what we do!!

  6. Bridget Allen says:

    HI Kim,

    First off, I am so sorry for your situation and all who are affected with this hideous disease. We just found out about a month ago that my husband who has not turned 50 yet, has Non small cell adenocarcenoma stage 4. Not sure if I’ve spelled this right. It has spread down his spine (few spots here and there) and has a tumor in his back and some in his lung and now we found some in his brain and in the lymph nodes. We are in the process of learning what the heck this all is. All we know is he never smoked a day in his life so not sure how the heck he got this. He is not doing well right now but he did start his Chemo yesterday. I wish all the best to you and will keep you in our prayers.

    • kimmywink says:

      Oh Bridget, A cancer diagnosis of any kind is tragic. Chemo can be difficult- take good care of yourself and your husband. Most importantly call upon others to give you a hand or twenty! Peeps love to help and all of us can use help when life gets rough.
      Take good care.
      Kim

  7. Bridget Allen says:

    Thank you so much Kim. We are learning to lean on others although it is hard for us as we have never had to do that before. Friends and neighbors are still in shock as we are but I guess we will have to learn to live with this “new norm.:” Take good care of yourself as well and best wished to you.

  8. Aram deKoven says:

    Hello Group, my mom has stage iv NSCLC. She did chemo and it wasn’t working now she is on OPDIVO and she is struggling. We are not sure if she is struggling with the disease, her anxiety, or the drug (all three I can hear you say). We are curious to know what other people have experienced while being on OPDIVP. In other words what can my mom expect to feel like as a result of this drug?
    Aram

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