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