CANCER ~ YOU CAN KISS MY BUTT ~

A MICHAEL KNOWLTON UPDATE

 

I have two words for CANCER….and they are not LET’S DANCE.

Ok, I will keep my potty mouth to myself (sort of) and you can use your imagination.

I am all about encouraging imagination, so this is your moment to shine and use your vivid imagination. Oh, and vivid it should be.

Put your mind in a place, where you can take a good look at cancer, and then WHOLLOP it in the head.

Yup, come out of nowhere.

Just when it is caught off guard, and not looking, smack it upside the head. Take this moment in, it is not often that I encourage a fist fight. This feels like parenting. My normal banter :”Ok kids, use your words, not your hands.”Well, that theory is going out the door.

 

We all just need to grab a hold of that thing called Cancer, and give it a swift kick to no~where~ville.

 

Dear Cancer ,

The welcome mat has been lifted. The door is closed.  If you enter, you are in for an ass kickin.  We will count to three and then you better duck.  My friends and I will whollop you in the head when you are not looking. We will catch you off guard when you least expect it. We are CIRCLING THE WAGONS. We are out here to love and protect not only Michael, but all those other beautiful souls who are impacted by your presence. So, shove off cancer, or we are going to sock it to you , right between the eyes.

Love,

The cancer fighters.

P.s You can kiss our butts

 

 

This week was ONCOLOGY VISIT time, and for those of you who know us personally, I am sure you have been waiting and wondering.  That is what this post is all about. My goal is to keep every one of my posts light and fun…however…this one is a bit , well, not light and fun – it is as heavy as a ton of bricks .

Warning label is out. I warned you , fair and square. 🙂

For those of you who don’t know us personally, I am so happy that you are here. You can help us to get cancer to kiss our butts.

The more the merrier…..so, pull up a chair and join in. No sharp objects, but you are allowed to throw things at cancer with your mind.

Who cares if we look like a bunch of nut cases.

 

 

We stopped in at information library at the hospital as we arrived and picked up some pamphlets with info, blah ~blah ~blah. Yes, I sound like a 4 year old.

Yes, it is extremely important to learn about support systems. Extremely important. However, when you are faced with the task of asking, you feel like a 4 year old.

It chokes me up a bit to ask for help.

It is like swallowing medicine. You don’t want to swallow the gross tasting goo, but once you buckle up and just throw it back, you feel better.

 

One  support pamphlet that made me curious was the therapy for coping with Cancer.  Screw that.

Note : I warned you that I needed to be censored with my potty mouth.

Lucky for you, you are my therapy session.  Funny enough, as I re-read this blog entry paragraph, looking for stupid typo’s, I thought ” geez Lynne, maybe therapy is not such a bad idea ” haha. NOT.

I know at some point we will need therapy.

At this point, I am having way more fun making fun of it.

 

So here is Michael’s picture of health:

Michael’s hemoglobin has tanked. We already discovered this fact when we were in Paris.  That was even a technical term that came out of his Doctor’s mouth.  Yup, official word, TANKED. I didn’t make it up.

Wish I was so brilliant with words. Wish I also had a magic wand, and I would beat that hemoglobin with the wand until it got back to a state of normalcy.

We did know that his blood results were poor, and unfortunately, even after only a few weeks, they really dropped AGAIN. That was a shocker.

Crazy thing , is that his hemoglobin is so low, he will need to receive blood transfusions in the next couple of weeks. He is already under the normal level where they normally start blood transfusions. I am actually surprised that he escaped so far without one.

This particular blood marker has dropped more in the last 10 months, than it has in 4 years.

It was a sharp, significant drop.

He is out of breath often,and extremely tired.

Doctors orders, are , if he continues to feel so out of breath and feels any weaker, it is time to go to emerg and get a transfusion.

 

What next ? Mmm. Ok, he had to have his FOURTH bone marrow biopsy too.

BRAVE FELLA.

I think most people would rather have their right toe removed instead of having a Bone Marrow biopsy.

It is seriously OUCH OUCH OUCH.  They put a needle in his lower back area ( I have watched ~ and don’t tell him, but the needle is the size of a 2 X 4 block of wood ).

I didn’t tell him how big that needle was, so don’t anyone spill the beans.

Either way, it hurts like a son of a gun, but he did it. The needle goes to the center of the bone, where they draw a sample from his bone marrow. Ok, I am weak and fuzzy just typing about this, so it is time for a change of subject.

We will have the results of the biopsy on July 28th. This will tell us if the cancer has infiltrated more than 75% of his bone marrow. My guess would be YES.

My guess is also that they will be able to help him to lower this number.

 

 

Glad to be on to the next subject.  NOT. Chemotherapy. Until the Doctor appt , I have looked at chemotherapy as a bad word. I admit it. No one gets excited at the prospect of chemo. No surprise there.

The problem is the alternative.

Believe me, I asked. “ what if Michael does not do chemo?”. Dr : “ He will not get better.

He will be dependant on blood transfusions for the rest of his life.

In other words, his life would be shortened drastically….blood transfusions are a temporary band~aid in the world of cancer.

For Michael, his blood is not truly the source of the problem. The problem is the mechanics of how his body makes his blood. Blood is developed in the bone marrow. His bone marrow is so infiltrated with cancer cells , he can not make blood that just plays nice …..only 25 % or less of his bone marrow can make healthy blood.

What we need to do is cross our fingers and our toes and everything in between ~ pray ~ send love and we can all hope for the best that he will respond well to his chemotherapy.

 

 

We will not know the course of chemotherapy for two more weeks. We need to wait on results from his bone marrow biopsy, CT scan and further blood work. His problem may also be that he may have hemolytic anemia. In laymans terms, ( because God knows, these words are not simplified for any brain ) even brains that are as  intelligent as we all are….ok, ok, THANK YOU GOOGLE.

Hemolytic anemia is caused when the blood is coated with antibodies/proteins and the liver and spleen basically eat it…like a packman.

He does look quite yellow, so that could be a result of what is going on with his liver. I am so technical. It is like an autoimmune problem, where the blood cells destroy themselves.

As we were leaving the Doctors office, something funny happened. Michael asked the Doctor if she will be testing him for Amyloidosis again.

She said : ” No. Not necessary. If you had Amyloidosis , quite frankly, you would be dead by now “.

After she left the room, we had a big fat laugh. Funny, when you hear things straight up, they are not so bad. Knowledge is Power. You will hear me say that again and again.

So the waiting game begins….When we know what the source of his poor blood work is, then they will be able to determine his course of treatment.

Unfortunately, his cancer has become “ACTIVE”.

His blood work has dropped significantly in a very short period of time. WM Cancer is typically an indolent cancer. This is unusual that it suddenly kicked into such a fast gear. K, changing that subject again, because that one brings tears to my eyes.Instead of thinking about cancer, I am going to convince him to visualize a nice cold beer on a sail boat with our friends. Yahhhh….

 

 

Chemotherapy will likely involve a 6 month time period. If he responds well to the treatment, he will maintain it. If not, they alter his treatment. Overall though, it is 6 months of chemotherapy and then 2 years of maintenance treatment. The good news, is that ~ if all goes well ~ he could gain up to 5 years until he will need treatment again. That is pretty awesome.  I am trying to forget about the fact that 3 of those 5 years will be filled with chemotherapy.

We talked about future treatment as well. The reason we talked about this, is because they base the chemotherapy on drugs that can fight the cancer but protect the stem cells.

Michael was told , a few years ago, by the worlds leading WM specialist , that he would likely not qualify for a stem cell transplant because his bone marrow was so infiltrated.

With advances in treatments, this may have changed.

If so, they will treat him, but protect the bone marrow so that the stem cells can be collected at a later date.

Down the road, he could possibly have an autologous stem cell transplant. Failing that, he could possibly have a stem cell transplant from a donor match.

This would only happen if his treatments failed, or if he did not respond well to his chemotherapy treatments. It is a last resort measure.

 

So, don’t let all this technical info scare you. Knowledge is Power. The more we know, the more we are comfortable talking about it, and the more strength we will have to give Cancer a bit fat swift kick in the pants.

Much love to all

Lynne

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23 Responses

  1. Jan says:

    My best wishes and hopes to you and your husband. Chemo is no joke. Been there.

    Forgive my ignorance but why the resistance to the blood transfusion? Is it a bad thing in his particular case?

    • Hi Jan,
      I wrote this blog post sooooo very long ago, when Michael was at the beginning of needing treatment.

      This blog post here :
      http://www.lynneknowlton.com/dear-cancer-i-hate-you-and-i-thank-you-2/
      is a much more current one.

      You are right, having a blood transfusion is a good thing. I think we resisted it at first because we were afraid it was the beginning of a long road. It was, but it has been a good road.

      By the time Michael required treatment, the blood transfusions helped him and were necessary. Without them, he was in danger of not surviving. It was serious business.

      Thanks for writing in….

      It reminded me to look back on life by reading an older blog post AND it reminded me how much I sucked as a writer when I first started. haha.

      Big LOVE and many hugs !!

      Lynne xx

      • Jan says:

        Oh my gosh I didn’t eve notice the date! Followed a twitter link over here!
        Oy. Too much time off during the holidays 😉

        • That’s my fault Jan … I have a plugin on my bloggy that auto posts my all my blog posts. I LOVE the feature, because the blog posts live longer than one day 🙂 but sometimes old ones show up and I think ‘eeek’ I wrote like a goof ball back then. LOL.

          Thank you soooo much for reading it anyway.

          PS. Isn’t it so very coolio to have that awesome time off during the holidays? Ahhhh.

          Cheers!
          Lynne

  2. I began reading about your tree house, but was truly touched by your honest and heartfelt discussion of Michael’s cancer and how your family is handling. Once again, I can count our family’s blessing of good health right now, but have faced challenges over the years. Sending you positive vibes, prayers and crossed fingers (trying to cover many bases) for health and happiness in your home.

    • Lynne Knowlton says:

      Thanks so much Kim –
      I believe that we all have our torch to bear – it is just what we do to hold those torches. Xx
      Thank you for coming to read about our cancer challenges. It just touched my heart to hear your words.
      Big hugs
      Lynne xx

  3. KATRINA says:

    My husband and I were married April 16,2011 and he started getting sick on April 18th on our honeymoon. We came home on April 24th at the end of the honeymoon_only to have to travel to Springfield because a tornado took out our airline’s landing.;…things-So we had to rent a car and drive 3 hours while he was at this point in alot of pain. I took him to a hospital which kept him for a week (he was unable to eat as his intestines were shut off and this hospital was just fine with letting him go) Anyone next day, I took him to another hospital with a huge speech for the doctor because at this point my husband hadnt eaten anything that digested in 21 days. They admitted him, next morning set up for 3 tests and was diagnosed with stage 3 adenocarcinoma-he had 3 months intense chemo (throwing even the kitchen sink at him) then a whipple surgery(removing a foot of his small intestine (where cancerous tumor was) all the surrounding lymph nodes which were cancerous and 40 percent of his pancreas. They left a 4 mm section of cancer that they couldn’t remove so he had 3 more months intense chemo-which he was done with in Dec. In April, had some pain in his gut—found a tumor between his aorta and inferior vena cava–his cancer is back and raging mad-it is now stage 4 and agressive-he had a mass grow in less than 12 hours in his neck and many more throughout his body-so I CONCUR THAT CANCER SUCKS!! i AM SUPER SORRY YOU HAVE TO GO THROUGH WHAT YOU ARE AND THAT HE HAS TO DIRECTLY FIGHT IT.

    • Lynne Knowlton says:

      Wow Katrina
      Your story gave me goosebumps. I wish you & and your husband all the love, peace and healing that is ever imaginable. Cancer has such an impact in our lives,doesn’t it? Your husband sounds like such a great Cancer warrior. A fighter. One that I can only hope…will kick cancer right in the ass. Kick it to the curb.
      I have watched this happen to almost my entire family. If there is anything I have learned..it is that there are no ‘right words’ to say to you. Hang in there. Know that you have so much love around you. I am so happy that you shared your story with me. Please check back in and keep me up to date.
      With all the love in the world,
      Lynne xx

  4. Lynne, I love your attitude! Thanks for following me on Twitter so I could find this fabulous blog of yours. I’m going to be a loyal follower from day one:)
    Yes to whooping cancer’s a$$, I totally believe knowledge IS power, and Yahoo to keeping your sense of humour through it all. If you lose that, what then?
    My dad died from brain cancer a year ago and while he was waiting for his surgery at St Mike’s in Toronto (a stupid 4-day delay) we laughed hysterically about doing the surgery ourselves with butter knives (plastic ones b/c that’s all the hospital had, apparently), among other things. Joking around is key in our family and at that time, it kept my dad’s spirits up and kept us all from coming unglued.
    You’re very inspirational in the way you write about this journey. Hope you keep it up!
    And in the meantime, I’m sending positive thoughts for your husband and family.
    Janet

  5. Jim Knowlton says:

    Hi Lynne, Great update on Mike’s condition. I’d like to be on your blog list. Jim K

  6. Dean Oros says:

    Hi Lynne,

    Thanks for your note.

    There are a few things I can tell you about:

    1. A wonderful Canadian photography book entitled: Cancer Connections. Published by Wiley. Photosensitive and the Cdn Cancer Society. Check it out on my blog: http://www.imagesofapromise.com/blog/2011/04/13/cancer-connections-book-launch-huge-success/

    2. The Relay for Life, a cancer research fund-raising event put on by the Cdn Cancer Society. They are a client of mine and I also cover at least one of the events per year pro-bono: http://www.imagesofapromise.com/blog/2010/06/14/superheroes-galore-central-toronto-relay-for-life/

    3. A couple more links to interesting projects I’ve done with the Society:
    a. http://www.imagesofapromise.com/blog/2010/05/22/an-army-of-brides-giving-cancer-the-boot-in-downtown-toronto-a-behind-the-scenes-peek/

    b. http://www.imagesofapromise.com/blog/2010/04/19/exhibition-angelic-photosensitive-back-on-the-road-2010/

    4. And last, but not least. For those touched by cancer, I’d like to refer you to an excellent book entitled “Cancer is a word, not a sentence”. It demystifies the first few weeks after being diagnosed, and is written for those just diagnosed and their families. I read it while my dad was fighting the disease. Written by oncologist Dr. Robert Buckman of Toronto.

    The 280 page book is available via Amazon Canada (I think only used copies are now avail – it sold out quickly).

    http://www.amazon.ca/Cancer-Word-Sentence-Step-Step/dp/1552636992

    I hope this is interesting and useful. All the best.

    Dean Oros

  7. Anonymous says:

    Lynne, this is such a wonderful medium to share Michael’s journey, and the challenges that face you and your family. I have lost far to many members of my family to this awful disease. I am so in your corner. If there is anything I can do to help, please let me know.

  8. deanorosDean says:

    Lynne,

    Your Twitter account spamming me brought you to my attention, but in this case there is an upside. It brought me to your blog and I read about your family’s fight against cancer. My name is Dean Oros and I’m a Toronto-based photographer. My father died very quickly of the disease a few years ago. I became involved the Cdn Cancer Society and a wonderful photography book entitled Cancer Connections as well as another book on coping with cancer. If you’d like more info pls get in touch. Best, Dean

    • Hey Dean,
      First of all…I am so happy that something GOOD came out of my twitter account getting hacked yesterday. 🙂 My phone went crazy, had a twitter blow up, and then…it all settled down again. It was a learning curve for me, and all is well again :-). Happy you found me , and realized I was a real person, not a spammer . haha.
      I would absolutely love more info on the Cancer Connections book. My Dad also died a few years ago from Cancer. I am so sorry for your loss. Great to hear that you have put your work into such a positive light and making a difference to others. I love to hear stories of positive outcomes from such a crazy disease as Cancer. All the best to you as well, Lynne

  9. Peter Knowlton says:

    Dear Lynne and Mike: Your positive approach is very important, we wish the news was better and we remain optomistic. We’ll continue to follow the blog, it is great ! We are close by and ready to do what ever we can to help.

    Love from Peggy and Peter

  10. Anonymous says:

    Hey you two nuts…glad to hear your back in canadian soil….when are we doing Margaritas….????it has been way toooooo long!!!! miss you both!! and love ya Cathy HUdson

  11. Anonymous says:

    It’s about 11.30pm in an isalnd far far away, Ireland and i’m reading your post lynne with tears streaming down my face, probably because our friend is battling with the same crap and because I had the absolute pleasure of meeting Michael in the UK…..what an inspiration!!. My thoughts are with you, along with my admiration and you’re dam right…take a sledge hammer to this and knock the sense out of it!!!My best wishes to you, Michael and your children. I will include you and your family in my daily prayers as i do for Mac (our buddy). Aisling is my name btw!

    • Dear Aisling, It is so sweet of you to write to us, from such a far away place. I feel touched, and inspired that you read the blog….and wrote such a beautiful comment. It is comments like yours, that keep us inspired and having fun along the way. Thank you soooo much ! I will give Michael a big hug for you ! Much love, Lynne and fam xo

  12. Mark wells says:

    Michael and Lynne
    Good to hear from you–love your blog-positive thoughts being sent your way from the Wells’
    In the famous words of the beer commercial a few years back . . .”I love ya man!” YOU’LL DO WELL back in beautiful Canada!!

  13. alisonmcgill says:

    Quite a powerful entry Lynn and I am right with you in the ass whooping department of cancer. Stay strong and knowledge is definitely power.

  14. Anonymous says:

    Keeping you and yours in my prayers Lynne!!!
    Love Betsy:)

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