The Good, The Bad and The Ugly

Yesterday was chemo round 34. It always hits me later in the evening, around 7pm. Heavy duty tiredness, to the point where keeping my eyes open is a major effort. I imagine my head like the top of a tree in a storm… moving back and forth erratically, but my body remains motionless. Just the top being pushed around at will. But there’s minimal nausea, which is nice.

The Good:

So far things are going along as they should. I’m still receiving treatment, Erbitux weekly. I still have cancer but I’m not dying. It’s under control… as much as the medical fraternity and modern pharmaceuticals can control it anyway. The Dexamphetamine they give me during the infusion suppresses the majority of the nausea and also makes my skin manageable for the first day or so afterwards. Through the process of elimination I’ve determined that it’s the Dex that settles it down. I mentioned this to my Oncologist and he was happy to prescribe a daily dose in tablet form.

My liver enzyme markers are all down, some back within ‘normal’ tolerances, which is very good. Considering my liver is the only place the cancer still has a hold this is a good sign. My liver is functioning perfectly. My CA19.9 markers are holding steady at 11.1, well within normal, and my CEA markers are bouncing around week to week between 143 and the latest round of 174, which is still good compared to when they were over 4,000. So instead of being four thousand times the safe limit I am now only 174 times the safe limit. It represents a decrease of about 96% since we started on the Erbitux. Unfortunately, instead of decreases of hundreds of points per round, we’re now only seeing decreases in the 5 to 10 point range. Not bad in and of itself, the numbers are still trending in the right direction, but I have a feeling the last 4% is going to be a very hard fought battle. Assuming the math stays the same and it drops by 5 points each time we’re still looking at another 30 or so rounds before I’m safe. Fifteen if it goes down in multiples of ten. *sigh*

The Bad:

I’m still having treatment weekly. It’s really starting to get me down. There just doesn’t seem to be any end in sight. We’re locked firmly in that dreaded holding pattern with very little room to move. All I can do is keep showing up for treatment, keep looking for new ways to manage the pain and irritation on my skin and just… keep knocking on heaven’s door. I’m feeling particularly low this week, and last week, as I have managed to pick up a case of shingles. Apparently once you have chicken pox a form of the virus stays in your body for life, hiding itself in the nerve ends in your spine. It usually only manifests itself if the body is run down or the immune system is less than stellar. I qualify on both counts. Shingles, as anyone who has had them will attest, is incredibly painful.

My Oncologist has offered me daily doses of Dex for my skin. The Dex really brings out the worst in me, more so after 18 months worth. Given that Mr Hyde spends far too much time in our house as it is already, I have refused the offer. I just can’t do it to Rach and the boys. As much as I desperately want relief from the burning and the itching and the pain…. I can’t do it. I don’t imagine for one second that any of this is anywhere near tolerable for Rachel. I’m not the man she married, that’s for sure. Just how bad it is for her I don’t quite know yet. Cody is starting to become aware in his own way that something isn’t quite right and the other night while putting Jakob to bed, he grabbed my face with both hands, pulled me in close so we were nose to nose, looked me in the eye and said “Yooouu…. Go. See. Da doctor.” Then he kissed me and rolled over.

So…. no Dex tablets.

The Ugly:

Me.

I hate having to look into the mirror. I see red, blotchy skin and swollen eyes. I see a torso covered in spots, a stomach with a stoma and colostomy bag, spotty arms and legs and feet with no feeling and a permanent sensation of pins and needles. I have never really been overly concerned with how I look. I think I gave up on that once I realised I was going bald, around the age of 20 or so. Nothing I could do about it so why fight it. At the time I was dating a girl who didn’t seem to mind (or at least she never told me if she did) and Rachel has never known me with hair… I’ve always  done the Peter Garret in the time she’s known me. In fact, I think she actually prefers me bald than with hair.

But my self image is under massive pressure. I really can’t stand to look at myself. I get looks walking down the street and never know if it’s because maybe someone has recognised me from Oprah or the various TV and print media stories or whether they’re looking at me in horror… like some kind of mutant. I fully expect the mutant response because that’s how I view myself. But… like I said, this is war and there are casualties along the way. I guess my ego needs a bullet or two.

Anyway… that’s where I’m at right now. I get distracted easily so my ability to uphold any kind of decent conversation is limited. This includes conversations with God. I get quite frustrated that I can’t sustain any kind of meaningful prayer with him, it really bugs me. But it’s times like this I just go back to the last thing he said to me….

“I am the LORD your God 
who takes hold of your right hand 
and says to you, Do not fear; 
I will help you.”

(Isaiah 41:13)

I know I’m still on his radar. So is Rachel. So is Cody. So is Jakob.

I firmly believe the time will come when I am safe from this disease. My healing has been sent… it’s travelling… and at the appointed time, I will arrive in the same place at the same time as my healing.

In the meantime…. it’s back into the trenches.

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~ by Kristian Anderson on May 24, 2011.

35 Responses to “The Good, The Bad and The Ugly”

  1. Thank you for continuing to tell your story, even the bad and ugly parts. You have been, and continue to be, an encouragement to so many. While it may be challenging at the moment to hold a conversation with God, know that many, many people around the world are lifting you and your family before Him right now.

  2. Kristian – we are all with you. The people in the street looking at you with goodness in their hearts are admiring your fortitude coping with what you are having to face. As am I, and the thousands of people willing you and all sufferers the best outcome. I am asking the world to will you better xxx

  3. My dear, you must remember that yes, this is a war, so every spot, every scar, every blemish is a war medal. Wear them proudly…keep your head held high! Anyone who looks at you strangely is just trying to understand what the medals are for. Each is a testament to your battle strength, to your faith in God, and to your love for your family! God bless you!!

    • Ditto to what wise Wendy said!
      Jakob and Cody are witness to a warrior in action.
      Take time out to rest and let us hold you up in our prayers.
      Much Love and praying for you all.

  4. Dear Kristian,
    Focus on the good, be respectfully aware of the bad and don’t say you’re ugly! Your body may be covered by scars, but these are only evidence of the beautiful person you are – an inspirational man who hasn’t, for a single second, stopped fighting for his family. That is beauty.
    As always, my prayers are with you and you family.

  5. Wow Wendy, that is a truly wonderful way to look at it. You are very wise indeed!!

    I understand your frustration, self loathing of your body, hating the Jeckle and Hyde routine. I don’t know you but i Hate that you are going through this. When I look at the big fat ugly scar where my breast used to be I often feel that way too. But I try to think of the fact that “hey, I may look a bit feral, but at least I am still here to FEEL”.

    Depression is definately a big part of dealing with Cancer. In December I had a crisis of faith. I seriously considered killing myself. I was wondering “what is the point of going through all of this to only have it possibly come back and get me later”. My issue is that I lost my mum to Cancer when i was 23. I guess my crisis was do I want them to just remember me as “sick mummy”. Part of me thought it was best for them to not even remember me. Somehow i thought that would be better.

    But I got through it. With the support of my husband and my faith that God will be there for me and for my kids. As my hubby said, they need me. They need me as their mummy – no matter if i am a sick mummy or a well mummy – they need me.

    So does your family. They don’t care about the scars, the bags, the baldness, the skin reactions. They love YOU. The bad days of Mr Jeckle/Hyde will be forgotten and they will just remember their Dad was sooo strong to get through it.

    I don’t know if you have been put in contact with counsellors, but you should find someone to talk to about all of these feelings. Getting them out will help.

    With your tablets – the ones the dr offered for helping with the skin irritation – maybe consider the fact that you will still be Jeckle/Hyde if you are in pain and uncomfortable – so yes, the tablets may make you a little “hard to live with” but so will the depression. Talk to your dr and see what he thinks. Sometimes we just have to suffer through the side effects, but sometimes the tablets are worth it in the end

    I am rambling. Sorry. I just wish I could put a smile on your face. I wish you WELL Kristian and i will say a prayer for you tonight. Stay strong, think positive.

    • Praying for you too Cathy.Take care and dont give up!

    • Thanks, Cathy, but I’m not all that wise…just have a mother who has been through five different types of cancer and is still kicking! I know the strength it takes and know that Kristian has this strength, and that he just needs to be reminded of it at times. And you, too, Cathy…you can do it, too! As I’ve learned from my mother, keep up your sense of humor, make sure you have something for which to live, and just keep on going! My mom will be 70 this September and I am so glad for the 25+ years since her initial diagnosis. Sometimes we barely remember the bad times, and yes, one of her breasts is smaller than the other, but she wears it proudly. She has no bladder but she has a pouch she can drain while sitting in the car or even standing up! (Sometimes I wish I were so “fortunate.”) And she still has to go monthly for photochemotherapy, which gives her a lovely tan for which she constantly receives compliments! She never thought when she received each of her “death sentences” that she would be doing so great now! And I am very glad she is here!

      I’m glad you’re here, too, Cathy. As I always say, NEVER give up!! If my mom had, what a waste that would have been!

      God bless you all!

  6. Hi Kristian,
    Having read that post, I would say that the ‘good’ is out-weighing the ‘bad’ and that and that you need to get rid of all your mirrors. Because it doesn’t matter what you look like on the outside, your inside self is amazing and strong.
    As always, our thoughts are with you and your family.
    jo & saffron

    P.S. I do wonder if you ever manage to read all the comments that people leave for you. Your have a massive extended family out there in the world.

  7. stay strong in Christ, Kristian!
    you are not ugly!

  8. Kristian,

    One of your fellow Oprah viewers here. I was just reading your posting, and there is something that I disagree with. You stated that you are “not the man Rachel married”. I think you are, even more so than the day you said “I do”. From what I know of you, I am sure she married you for your strength, your bravery, your sense of humor and your kindness. From what I can tell, these attributes are very well intact. There is a reason that “in sickness and in health” are part of marriage vows. Rachel knew what she was getting into when she married you. She was in for the full package deal. Never doubt that. You are not letting her down. In fact, I am sure she is more proud of you than ever.

    You will get through this and look back on this time as a very unfortunate bump in the road. However, this is not your final path. Much greener and more lovely pastures are ahead. Keep going.

    Be well,

    Meghan

  9. Please reread Wendy’s post, her words speak the truth. You are a beautiful person inside and out. You have touched so many lives with your strength and courage. My thoughts and prayers are with you and your family.
    Fight on!!

  10. I pray that the LORD healer – Jehovah Rapha is with you, guiding the hands of your doctors. That His presence will be your strength. Praying for you and your family…

  11. Keep fighting……………..you are all worth it.

  12. In the trenches with you, Kristian.
    p.s. if you think you’re not the man Rachel married, maybe it’s because at the time she did not know she was marrying a brave warrior poet whose words would inspire so, so many to value themselves and each other more than they thought possible… I’ll bet she suspected it though.

  13. Just stop for a minute and think how through all of your posts over the months Kristian, and through everyone’s responses, how God is at work. And that is the most amazingly beautigul thing-nothing ugly about it at all! Rest in the words of the Holy Spirit being delivered to you through people’s comments.
    Lifting you up to our Savior and sending much love, Bill & Kari

  14. Just watched ur Rachel b’day vid for the umpteenth time. it still brings me 2 tears. so glad u r still alive. Saw ur beautiful country 5 yrs ago and miss it terribly. Hopefully, will return soon. Oprah’s show moved me and made kinda homesick. I am sending u all kinds of strength. “Live long and prosper!” Uncle Stan

  15. “Never, never, never give up!” And the other famous Winston Churchill quote: “When you are going through hell, keep going !”
    My thoughts are with you.

  16. Hi Kristian,

    I have been following your storey.I have been through bowel cancer surgery and chemo.I know the physical and mental toll.I understand the mental toll as your mind goes through all sorts of scenarios.Silly as it may seem I put a positive spin on it that I have beaten cancer and it is a feather in my cap.Looking at your situation you are doing very well.You have got rid of it in the bowel.Your cancer markers have come down to normal and it sounds like the cancer could even be dead in the liver.You have the edge on it now.If you look at someone like Lance Armstrong who had cancer that spread to the brain and was able to beat it and go on to win numerous tor de France races anything is acheivable.The best learning on cancer is from those who have beaten it in what they did.When you speak to someone who has had cancer they fully understand.Sayings have more meaning “an apple a day keeps the doctor away” I try to eat an apple a day plus the apple seeds which some say kill cancer as the seeds contain cyanide B17 but only small doses.Lance Armstrong would drink straight brocolli juice.When you are pushed into a corner you will try these things.They say the red vegetables and fruits are good for you.When I was first diagnosed I was losing that much blood and was aneamic I was given two blood transfusions.I found out that beetroot boosts the blood count and was juicing some in with other fruits/vegetables, within about 2 months my blood count went back above normal.Mind you before this all came up I was probably only ate 1 piece of fruit a week.Anyway I won’t bore you with all of this and from what I see you are doing very well.Keep your head up because you are doing really well.

  17. Sometimes the most beautiful people, are the most hideous of people. Whatever you think of how you look, I doubt there are many people on this planet who could compare to how beautiful of a person you are.

  18. For every ounce of love left in you, there is an ounce of fight as well, as long as there is one, there will the other be also. And as long as you have faith in the Lord and call upon him, he will always be there to help you fight.
    Many prayers for you and your family. Kristian, It is an ugly battle that you are waging against cancer, therefore one should expect that your battle scars will be just as ugly, but never doubt that the beauty of your soul shines brightly for all to see. There are cracks in you, so to speak, and that’s how your light gets out … and inspires others. God bless!

  19. God bless you! Don’t give up the good fight, and no you are not ugly. Have never met you in my life, but dude I already think you are one of the most beautiful persons around! 🙂 🙂

    Smile at the skies when there’s a thunderstorm, cos God is taking a picture of you! 🙂

  20. I truly admire your honesty. So many people when locked in battles like this one pretend they’re hey okay and that NOTHING can get them down. You are honest and open about every aspect and that is what God wants. He doesn’t want you to lie and hide and pretend you’re something you’re not.

    You are the epitome of strength. It takes a strong man to admit his good, bad and ugly. And it is still going to be hard but the end result will be worth all your pain, frustration, anger, sadness and every other emotion.

    Despite you feeling this way about yourself those around you don’t see a mutant. They see possibly the strongest and most admirable man they know. But you are entitled to feel this resentment towards the illness. Because that is what I think it is directed at.

    It’s easy enough for someone who is not ill to say keep fighting. I can only imagine how hard it is but I have picked up that you are not the kind of person to ever back down from a fight. You are the kind of person who restores my faith, not only in humanity, but also in God. Thank you.

  21. You are truly inspiring. God bless you and your family. Keep your head up and keep fighting.

  22. Dear Kristian and Rachel,
    Great news to hear the erbitux is doing its thing, it gives me hope that there is a plan B for me and everyone else with liver mets. Thankyou for campaigning to have it listed on the PBS. My friends and I have also started a letter writing campaign to Nicola Roxon, Minister for Health, so hundreds of letters should be hitting her desk about now! I know how hard it is because I am going through it too, but you inspire me every day. Fingers crossed!!!

  23. Dear Kristian,

    I saw you on Oprah for the first time and promptly said a prayer for you and posted your “Marry Me” video to my Facebook page. You have crossed my mind many times since that day last fall. Today I needed to know how you were doing-so I Googled you and here I am. Your words, how ever sad and painful they are to read, they are truly beautiful. It is an incredible thing to paint a picture so vivid I can practically see you across the room even though I am half way around the world. I can see your pain, how you hurt, how you long to come to the end of this journey and begin the next phase of living a “regular old life”. You and your beautiful family are in my thoughts and prayers. I pray that you have strength today. I pray you will not hurt.

  24. was buying some jeans today and the “Marry Me’ song started playing brought a prickling feeling to my eyes.

    Mate for the rest of my life I will think of you when I hear that song.

    You have achieved legend status dont worry about how you look.

    Tim

  25. Dear Kristian, your name is Christian x2. dont forget the Lord is working behind the scenes and is in control. He has great things planned for your future – you are already touching so many lives ! I’m so proud of you and praying for you. Keep strong, I know as I am going thru this too with my husband. Lets all pray for each other as the Lord commanded. YOU ARE LOVED !

  26. All I can say is – just re-read Wendy’s post – it says it all. Still have you in my nightly prayers – go kiss those precious boys and then rest. Save your energy for living and laughing.

    “I am the LORD your God
    who takes hold of your right hand
    and says to you, Do not fear;
    I will help you.”

    (Isaiah 41:13) I really think that says it all. God has you covered……
    The Grandma from North Carolina w/non hodgkins lymphoma

  27. Kristian,

    Great to hear that you are getting progressively better. Don’t give up Hope. It is always darkest before the dawn, before the beautiful aurora shines forth to herald the coming of the sun.

    You are not your body. You are not your illness. You are not your ego. You are the special child that God is carrying in His arms. You are the awareness that radiates compassion and love through your beautiful writings. You are the brave soldier fighting for your family.

    So, be glad. Give a smile to your heart. And blessings…

  28. Hello Kristian ,
    I’m Cristian too and I go through the same as you do now . I’m on Vectibix , another anti-body , as Erbitux , and same as you from very high markers , CEA in the 2000 , they came down after 8 treatments to 115 ! Still high , but 95% lower than as I started. Here in Quebec , Canada , as in Australia , this drug is not covered by Medicare and if you do not have the private drug insurance , then it’s $8,000 a month out of pocket. Even with my insurance it was a hard battle to have it approved. It is a shame , because everywhere in Canada , in other provinces this drug and Erbitux are covered by the Medicare , no questions asked ! These two drugs Vectibix and Erbitux are doing the job in keeping the beast in leash. We have to be patient and let the drugs do their jobs. I understand you fully when every week you have to go and get the infusion , but this is better than the alternative ! I have two kids like you , lost my wife to breast cancer 18 months ago , while I was battling my cancer too , so many reasons to fight tooth and nail ! You keep writing , it’s so inspiring ! God bless , Cristian

  29. Hi Kristian, I’m so sorry this has taken so long to get to you…I read it a day or two after reading your good/bad/ugly post and thought that it is something you can hang onto.

    “Lord, you only are able to give help against the strong (and we could add ‘the ugly’ here too) to him who has no strength.” 2 Chronicles 14:11

    You have opened my eyes so much in realising just how much cancer fighters go through – I had no idea of the depth of chemo ramifications other than the nausea. I know that doesn’t really help you feel any better about what you are going through and the daily, minute-by-minute battles you face, but know that your words, your life, and your faith are impacting other people’s lives…whether you feel mighty or very, very tiny. God is mighty! His Word is mightier than any other word. He is the one with strength for every battle.

    May God be your strength.
    Amy

  30. You are one of the most inspiring people I have ever experienced, I hope I can emmulate just a fraction of your courage, heart and soul in my life and adversities I face, all of which pale in comparison.

    While I can certainly not relate all I can say is keep fighting the good fight. My mom was given 6 months to live with 3 small kids in 1978, they did not even bother with chemo or radiation – She just celebrated her 60th birthday. I believe in Isiah 41:13.

    You have all my good thoughts and prayers coming your way. My love to your beautiful family.

  31. Hi Kristian
    Thank you so much for sharing your story.
    You are are very courageous and strong.
    I’m presently going through chemo treatments and I can empathise with you and the feelings you expressed.
    It’s such a tough road but hang in there buddy.
    You’ll get through this and you’ll be healed and this will pass.
    What has helped me when I’m feeling so bad is to tell myself a positive story about what’s happening to my body. My thoughts are that I’m feeling so bad because my body is using all its strength to heal me and destroy the cancer cells. I also visualise that happening.
    Take good care and I’m sending you lots of good vibes and healing energy.
    Take care,
    Meiron Lees

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