I Want A New Drug

I had new CT scans this week and got a chance to sit down with my Oncologist to review them.

I was due for these scans anyway as it has been three months since the SIR spheres procedure and the results would show how effective (or not) it had been. With the surprise blood results from a few weeks back they were also needed for my peace of mind.

Annnnnnd…….. the scans show no signs that the cancer has spread.

Good news.

They also shows that the remaining tumours in my liver have calcified. My Oncologist explained that this generally means the tumours are inactive. Where there had been ‘room’ inside them before due to the fact they were living organisms, they have since died off and the body then fills the space with calcium deposits to help protect and heal the affected area. At least that’s how I understand it. If anyone (qualified) would like to comment and explain it further I’d be happy to hear it. But you must be a doctor or nurse…ok? On top of that the tests which look at liver function are showing a significant decrease in all areas…. another good sign.

I’m now on the drug named Erbitux (Cetuximab) and have received two infusions so far. I’m responding, or so we think, because I have broken out in some terribly painful acne all over my head and torso. As painful as it is, it’s usually a sign that the drug is doing it’s thing. I’m grateful it appears to be working but the rash/acne is very itchy and causes my scalp to burn. I am constantly going to the bathroom to stick my head under a cold shower to try and achieve some kind of relief.  It’s impossible to lay my head on my pillow and so I am now waiting until I can’t stay awake any longer and crash from exhaustion in order to get some sleep at night. I have antibiotics and cream so hopefully they will assist in making things more bearable. Between the itching and burning scalp, the stoma and the neuropathy (yes, still… feet especially in constant pins and needles…. curse you Oxaliplatin) I am struggling to remember what it feels like to have a “normal” body. When Huey Lewis sang “I want a new drug, one with no doubt. One that won’t make me talk too much or make my face break out” he wasn’t far off the mark. But it’s temporary and the end results, ie not dying, are worth it if it means I am here for decades to come.

My CEA markers are still very high (up to 4,000) but my CA 19.9 has not moved since we checked it a few weeks back. It’s holding up at 112. My Oncologist is confident that once the Erbitux begins to work through the body these numbers should begin to come down. It would be strange indeed if they do not, given there is no bowel cancer anymore and the liver is looking the best it has in a very long time.

One day all of this will be a distant memory…. recognisable but unfamiliar.

So this week I picked up one of my guitars for the first time in a very long time… my black Duesenberg 49er. I went through a stage where I did not really care if I ever played or produced music again. I was saddened by my loss of passion for music but at the same time felt powerless to stop it from fading. But after seeing Train up close and being able to see the joy on Jimmy’s face as he played, I was reminded of what it felt like to lean back into the music and get lost in the moment. I know the feeling well…. it’s just been a while. My hands held up ok so this week I’m going to start work on a new pedal board and try and get back into scales to jog my finger memory.

It feels nice to play again. Hopefully the neighbours won’t mind.

 

(btw… a big welcome to Oprah’s ultimate 302 viewers. I really appreciate you taking the time to stop by.)

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~ by Kristian Anderson on February 28, 2011.

31 Responses to “I Want A New Drug”

  1. awesome awesome awesome news. How good is that! I am soo happy for you Christian. I hate those appointments with a passion. I feel sick as a dog until I hear what they have to say.

    The only advice I guess i can offer really as a fellow cancer patient/survivor is to make sure you get some counselling. I am not saying because i “THINK” you need it or anything – just from my own experience, its really hard to deal with the fact of what we have been through/continue to go through and also to deal with the future. People say its a “new normal” – well, i hate the new normal and i want my old normal back. To me, every ache or headache, or cough is a worrysome time thinking “is this a secondary”. I was never ever a negative person and so this is really hard for my head to process – the constant worry – the knowledge that my body has failed me. Hard to believe, but in December last year I actually seriously considered killing myself. Not something I would ever ever think of doing.

    Some people to tend to think that once the treatment is over, that you are over Cancer and should think yourself lucky you survived. And yes, we should think ourselves lucky to survive it as many don’t – BUT, its something we will LIVE with for the rest of our lives. Its a lifelong struggle which i am told – gets easier. But those first 4 or 5 years can be hard. Its not just hard on us, but also our family. My poor hubby worries even more then I do when I have a stubborn cold, or complain of a pain.

    My daughter (6 years at the end of march) who was 4 and a half when I was diagnosed still asks me if the cancer is going to come back. I can only tell her the truth, mummy is doing the best she can to stop it coming back, but if it does, we will fight again. I told her mummy will never give up – even right up till the end. To me, its a life-lesson for her too (and my other two little ones – 2 and 3) – never give up and keep trying hard at whatever you do in life. I guess we are lucky in a way that we can teach our kids this.

    Anyway Kristian – I just couldn’t not reply when I saw your message. Sounds like such great news – considering the scary news of the other week. I don’t know anything really about the calcification stuff so will leave that to others. Was it a full body scan?

    I wish you continued strength in fighting your fight. Hug your boys tight and love your wife how you do. If you can survive this – you can survive anything!!!!!

  2. fabulous – just all fabulous 🙂 … and love that you’re back into the music .. I get it in a small way as I’ve had my own health issues in the last 2 years and many many many things just … slid .. ’cause I didn’t have it in me to care …

    but the joy of being interested and having the energy to care again is priceless … so very happy you could pick up that guitar again!

  3. I’m so happy things are looking good. I know the itchy/burning scalp sensation can NOT feel good, but you already put that in perspective. I’m sure you know there are people praying for you all over the world. Sounds like those prayers are being answered. I hope the day this is all a distant memory isn’t too far around the corner.

  4. Hi Kristian,

    Keep the faith in the miracles that the good Lord can bring.

    And let the music sooth your soul and alleviate your suffering. Loose yourself in the flow of beautiful sounds and let it tame the monster in your body.

    May you be well, happy and peaceful.

    Blessings!!

  5. I can’t help but shed tears every time I read your blogs, and lift you up in prayer. What wonderful news. What a Blessing to your neighbors to hear you playing your guitar. That is so great.

  6. So thankful for this update! The best news ever.

    God bless.

  7. If I was your neighbour I’d be overjoyed to hear music again :o)

  8. Wow, great news!! I have been following your blog since your were on the Oprah show in January.
    I hope that you realize what an amazing inspiration you are not only to other people going through the journey of cancer, but for people such as myself that you help to realize just how truly lucky and blessed we are to have our health!

    I anticipate your new posts and each time I read one I am amazed by your writing eloquence. I really appreciate your honesty in what you and your family are going through in this journey.

    I hope that you have been spending some quality time with Rachel and your two sons (as I am sure this is an amazing way to add to the healing process:)

    Take care, glad to hear the new drug is working (hope the painful acne is resolved with the creams etc…) and look forward to your next post:)

    Sincerely Yours,
    Sonya Metcalf, RN South River, Ontario, Canada
    I just wanted you to know that I think and pray for you often.

  9. Fantastic news! Thank you for sharing. Thank you also for sharing your deep faith in God. I feel this same faith and am so grateful for a God that will never forsake us – I know He is there with you every step of the way even though he speaks quietly at times. I continue to pray for you and your family each day and am grateful for your willingness to share – it strengthens me to read of your faith and goodness!

    I love the person that said if they were your neighbor they’d be overjoyed to hear music again – I second that —- play on!

    Cris

  10. Wonderful, wonderful, wonderful news! I am so happy for you. Bring on the music!

  11. Creativity is one of the first things to go when you are undergoing a “fight” against something in your life, so its indeed a great step that you are able to even consider playing again. Good luck. Healing is such an art and not always a science.

  12. This post feels so positive and playing music is a wonderful tonic for the soul.

  13. Amazing Grace, how sweet the sound 🙂 Thankful for your heart hearing good news today…

  14. read your blog besides the itching and burning scalp this is great news all the best Kris

  15. Yay!! 🙂 Awesome news! I’m still battling a few annoying side effects also but life is good! We are here! Keep up the good work! Would love to be your neighbor! Play play play!:)

  16. Dear Kristian, I am silent visitor of your blog since months and now I just want to tell you how much I am happy about these very good news, and how much I respect and admire you and your family for your strenght and confidence in life. I really would like to wish you that all these past months of pain and harda struggle could be very soon a far distant memory of a sleepless night nightmare. I am a songwriter and I am recording my 6th album in these weeks in my quiet room, with my beloved family voices on the background. I would like you to know that I thought about you every time I put fingers on my guitar and you’ve been in my heart for all these recording sessions. So I should put your name on albumk credits…KA instruments? HOPE of course.
    You and your family are in my heart and in my prayers until’…we could meet to play together maybe! 🙂
    A strong embrace
    Davide

  17. How wodnerful ….. x

  18. Wonderful news! Thank you for the update! Still praying for you and your family.

  19. Kristian and Rachel,
    I was once in a room where a devastating diagnosis was delivered – my mother – and she proceeded to do what you’re doing: gathered the best doctors and did what they said, ignored the quack-quack (a “friend” who called the morning of surgery and told her she should get a second opinion…), recognized the immense power of faith and hope. There were a few scares and setbacks along the way – and eventually she died – of old age – at 87!!

    Stay the course… you’ll get there.

  20. Thank you God! Wonderful news….keep on strumming – it IS music for your neighbor’s souls. I continue to lift you up nightly – stay strong and safe in our Lord’s arms.
    Cathy – the grandma w/non hodgkins lymphoma in America

  21. That is tremendous news for you and your family. Thank you for sharing your journey with us all.

    Keep on playin’ that funky music Kristian!

  22. Hi Kristian,

    Positive news.Things are going in the right direction.You will find comfort in God.When I was first diagnosed with bowel cancer I lost a lot of blood.A week before I was diagnosed my wife found me passed out on the bathroom floor in the middle of the night.When I was first in hospital and was diagnosed I freaked out and couldn’t sleep.I got that worked up about it I passed out in the hospital bed.It was as if an angel of god came to me and when I woke it was like I had no worries.I am still here 6 years later.In my heart I know god came to me.

  23. May the good Lord bless and keep you…

  24. Hi Kristian, stopped in to see how you were doing. Glad to hear about the positive news all around. Keep your chin up! I’ll be praying for you and your family.

  25. Sending you light and warmth and care. I hope the pain from the rash is settling and that you continue to find moments of peace and silence amongst all the loud banging that cancer brings forth.

  26. Kristian, I get chills every time I watch your video. You and Rachel are taking the vows “in sickness and in health” seriously and it makes my heart leap that in your sickness, when you would have a right to think about yourself, you thought of Rachel and how you could make her feel special. Thats a real man. Godspeed Kristian!

  27. Kristian, I am glad to hear the good news, I hope it continues to get better and that one day soon your doctor will be able to tell you that you are in remission. I want to thank you, for being such an inspiration to me, even when you are at your lowest, your writing has the ability to not only make me understand what you are going through (even though I do not know how it feels) but, at the same time it conveys such light and positivity! And you do this with as much grace as possible considering your situation. I will continue to pray for you, your family and for the anialation (not sure if I spelled that correctly) of cancer. Peace to you and yours!

  28. Hi Kristian,

    Saw you on TV this evening.

    Bravo!! You are doing the right thing by being the advocate for getting the Govt to fund the drug, Erbitux. Thank you for being the Voice for the many cancer patients who may not have the chance to try this drug without some financial assistance from the Govt as it is so expensive.

    Onwards, brave soldier, in the battles ahead!! Many people are rooting for you to succeed in your endeavors. God is by your side…

    Blessings!

  29. Kristian,

    I first seen you on the Oprah Winfrey Show, I had just been dianagnosed with Bowel cancer but i was still undergoing tests to see the extent. It was bad news same diagnoses as you i have a 6cm tumour in my bowel, this has travelled to my liver and it is allover it so surgery on the liver is not an option. They said my bowel was about to close and i would need to have a Stoma fitted, and i would need to start chemo straight away the tumour in the bowel would have to wait.
    It was a lot of news to be confronted with in a really short space of time. I seen you on channel seven news and for the first time i felt hope. I am 43 years old i have 2 children and my son has just has a little girl so im a nanny as well and loving it.
    I am interested in the new drug you have tried as they said you are cured !!!!!!!! Wow !!!!! i have received my first introvenious chemo today Oxaliplatinim im also on the zeloda tablets daily. I have sat here tonight and read all your thoughts and feelings and they have made me both laugh out loud and shed a little tear, it is very comforting to read someones thoughts and feelings that are exactly the same as mine, some of your feelings and reactions to the procedures especially about the stome are exactly as i felt it was both comforting and very funny.

    Thankyou for expressing my thoughts out loud, i have found that at times Cancer can be very lonely with no one really understanding my feelings but you do and that has been very comforting for me.

    I would love to hear more about the Erbitux, this may be able to help me as well and if its a fight your up against to get this drug im up for the challenge i want to help.

    Again thankyou Kristian

    Your very grateful friend Jacki 🙂

    • Hi Jacki.

      I’m so sorry to hear of your diagnosis. I know exactly how you feel. I, too, have been treated with Oxaliplatin and Xeloda tablets. Oxaliplatin didn’t work for me at all and the Xeloda only worked for a little while, but everyone responds differently.

      If you can, ask your doctor about the SIRT procedure. My liver was inoperable too but the SIR spheres were highly effective in dealing with the cancer there. I’m not entirely ‘cured’ yet…. still a long way to go but the Erbitux is doing a great job and I’m grateful to be receiving it.

      Yes, cancer is an awfully lonely road. Even with loved ones close by there is no one who can really understand what you’re going through. But… you can do this. It’s going to require every ounce of energy and determination you have. Ask your Doctor every question you can think of. Never be afraid to raise an issue if you’re unsure or apprehensive. Do whatever you need to do to endure the treatment but never ever give up. There are people close to you that need you to fight.

      Stay strong…. it’s not over yet.

      k.

  30. Hi Kristian,

    Great to see you are playing again. Came across these lyrics yesterady after reading your most updated Blog and they struck a cord. The band you’ll probably know..”Elbow” song..”One day like this”. Throw those curtains wide Kristian.

    Drinking in the morning sun
    Blinking in the morning sun
    Shaking off the heavy one
    Heavy like a loaded gun
    What made me behave that way?
    Using words I never say
    I can only think it must be love
    Oh, anyway, it¡¯s looking like a beautiful day
    Someone tell me how I feel
    It¡¯s silly wrong but vivid right
    Oh, kiss me like the final meal
    Yeah, kiss me like we die tonight
    Cause holy cow, I love your eyes
    And only now I see the light
    Yeah, lying with me half-awake
    Oh, anyway, it¡¯s looking like a beautiful day
    When my face is chamois-creased
    If you think I¡¯ll wink, I did
    Laugh politely at repeats
    Yeah, kiss me when my lips are thin
    Cause holy cow, I love your eyes
    And only now I see you like
    Yeah, lying with me half-awake
    Stumbling over what to say
    Well, anyway, it¡¯s looking like a beautiful day
    So throw those curtains wide!
    One day like this a year¡¯d see me right!

    D

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