Michael’s Story

Site created on May 22, 2018


Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.


Hey family and friends,
It's Michael here.  Wanted to catch everyone up with my health situation.
Sorry I'm not writing a song here so it's a bit long.



Most of you know I had a run in with a rare thyroid cancer back in 2014.
Kristy and I thought I was done with it.  We caught it early and they removed my thyroid.
Over the past few years I have continued with my charmed life as a musician and overall
happy guy just being monitored for medication and screened for cancer.


In June of 2017 as a part of my routine blood tests one of my possible cancer markers started

rising and I started feeling funny again.
Some of you know about my light headed feeling that took me to the doctor and discovered

the first cancer.

It has been going on for months and I talk about it too much with many of you probably.



That lead to a number of ultrasounds, CT scans, and PET scan tests and in November of 2017 doctors

found a small glowing spot in the upper part of my left lung. Obviously bad news.

I went in for a procedure to biopsy the spot and eradicate it with radio ablation  days before

Christmas in December 2017.


The doctor was unable to get a biopsy to tell what type of cancer it was at that time because

of bleeding so they just set it on fire with the ablation.

When I went in for a follow up visit in February 2018 the follow up tests showed my numbers
had risen by 20x. 



More blood tests. More rising cancer marker numbers. Then another PET scan in March found that I have cancer activity
in a lymph node or two surrounded by my left lung. The test markers also now appear to point to a possible medullary cancer.
Due to or related to my previous rare cancer.


The doctors wanted me to do 15 rounds of targeted radiation but given the nature of my previous
cancer and the fact that I had to deal with another spot only 4 months ago Kristy and I wanted a second
opinion.


We were referred to a specialist in Thyroid cancer at Rush University Chicago.
Great doctor!

Unfortunately the second opinion has turned out to be an even scarier prospect.


We have been informed that if this cancer activity in my lung turns out to be the medullary
cancer I had before there is really no satisfactory treatment.


It was explained that the medullary tends to just keep coming like mice or roaches.
If you have one you'll have more.

You have to weigh the value of treatments against what you are getting out of killing
healthy parts of you. Meaning how much do I get out of 15 rounds of radiation stopping a tumor
that pops up only three months after we dealt with another.


The doctor has told us there might be some small hope.
It would still only be bad news but if they could get a biopsy sample
of my lymph nodes they might find it's another type of cancer and I may have

options to treat it.


They presented my case to the Tumor board at Rush a couple weeks ago and a

fantastic thoracic surgeon thought he could get a biopsy using a special

ultrasound/camera/needle device that they send down my throat and into my
lung. Then the poke through to the lymph node with the needle.


If the biopsy comes back as the "good" bad news we are hoping for that will mean it
is a primary cancer based in my lung. The solution will be that doctors will remove
the top lobe of my left lung.
It's the news that strangely enough Kristy and I are hoping for.


I had the biopsy procedure this week and happily the surgeon was able to get the samples.
Now we wait until next Thursday May 31 for the pathology to see where I go from here.


Thank you so much for the love and wishes.
Hopefully all of you know that it is great appreciated.


-Michael




Newest Update

Journal entry by Michael Heaton

Hello Friends and Family,

Kristy and I just returned from my lab
tests at University of Chicago Medicine.

After spending the past two months dealing with
adjustments to the cancer therapy drug because of
issues with my liver it looks like my team has settled
on a lower dosage that is working for me.
They had to take me off the drug a couple times because
it was building up in my system and hurting my liver.

I had to spend a couple hours getting my
picture taken inside MRI and CT
machines this week but today
we got what I consider to be great news!

It looks like this experimental drug is really kicking
this cancer's butt!

All my blood tests, brain scans, body scans, heart scans,
kidney functions, liver functions and attitude came back
looking great today!

Tests showed a shrinkage in the size of the lesions in
my lung and no new growth of the cancer in my liver,
ribs, spine or my brain!

Many of you also know I was prescribed medical cannabis.
The cannabis has been working amazingly well for me.
I only eat it since it might seem silly to take up smoking
with cancer in your lungs.
It has really helped with anxiety, pain and it brought back my
appetite to the point where I have gained back the 25
pounds I lost to the cancer.
Today (Feb. 27) I finally weighed in at my pre-cancer weight of
176 pounds!
Hell yeah!

The pain in my bones has gone away to the point that
I have been able to pick up my guitar and play again.
If I continue getting better and feeling this way
I will try to get back and play some shows this summer!

Just four months ago I couldn't lift a gallon of milk,
I was walking with a walker in my home
and I had to have help getting dressed.
As of today the turn around seems pretty damn remarkable.
Thank you science and my teams at University Of Chicago and
Rush University!


I want to say thank you again to all of you that have 
kindly and generously reached out to me, Kristy and my
family. Old friends and new! Your notes, letters, posts, donations,
prayers and well wishes have REALLY been helpful.
I still have friends coming over daily to hang/help out when
Kristy is working. It's been a great way to stay social.

That's all I can think of.
Kristy and I are going to take a nap now. 

Thanks and love,
Michael

mike@michaelheaton.com




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