New News is Old News: The Fourth Scenario

Dearest Friends, Family, and Colleagues:

Today is a wonderful day for three reasons:

(1) Christine and I celebrate our 9th wedding anniversary.
(2) It is my dad's 89th birthday - Norman Charles Myette.
(3) We are surrounded by wonderfully amazing friends, family, and colleagues!

And now for news from my appointment this morning with Dr. Zu.

The fourth scenario, or the one a wiser person suggested this morning prior to my appointment:

The "curve ball" that concerned Dr. Zu so much has been there for a while. Radiologists who view and report on my CT scans simply did not "see it." Say what?????? Because the focus during my CT scans has been on the tumors on my pancreas and liver, the radiologists did not detect the presence of this growth. A careful 'reexamination' of past CT scans revealed that this growth did not just show up in the three months since my last scan which is what initially concerned Dr. Zu so much.

Dr. Zu described the growth as the same type as the ones on my pancreas and liver, but added that it is somewhere between 'malignant and benign,' one of those funky TSC/neuroendocrine/cancer things that make my case so 'interesting.'

He recommended following the same course of treatment that we have followed, successfully, for the last four years:

• Afinitor (pill) daily 
• Sandostatin (injection) monthly
• CT Scan/MRI every three months

Of course, in addition to my benign brain tumor, bone sclerotic (benign) on one of my ribs, a calcification on my kidney, and the neuroendocrine tumors on my liver and pancreas, he will track the status of this 'new' tumor in that area we will call the 'in-betweenis.'

He added that surgery or zapping it (1) will not cure my condition; and (2) will only cause additional complications.

So, the good news is that, yes, I have a cancer-like growth I did not know about, but which can be managed.

I have got to write a book! By the way, Dr. Zu and Dr. Lajin have discussed my case and agree that they should document it because, in all likelihood, they can apply what they learn from me to help others. And, this to me, is so important.

Next up:

Blood work (yes, tomorrow or Friday).

Sandostatin injection on Monday. A shot in the glute has never looked so good, let me tell you!

Christine and I did discuss celebrating life, love, and friendship. Perhaps a bonfire is in order! Stay tuned for details. 

With relief, belief, disbelief, release of grief, gratitude, love, respect, and heartfelt thanks,

Andrew and Christine

Appointment With Dr. Zu Tomorrow (Wednesday) at 10:30

Friends, Family, and Colleagues:

Dr. Zu’s assistant called this morning to set up an appointment with him tomorrow, Wednesday, at 10:30 a.m.

Please send positive thoughts, prayers, vibes our way!

One thing I know for sure:

I will get past whatever is put in front of me.

With love,

Andrew 

Three Possible Scenarios

Dear Friends, Family, and Colleagues:

Some clarification regarding the initial biopsy results and what they mean. Of course, I am not a doctor.

As we see it, there are three possible scenarios at play here. Because of the unusual relationship between Tuberous Sclerosis Complex, neuroendocrine tumors, and cancer, we have to wait for the full pathology to see what the exact nature of this tumor is.

The three possible scenarios are:

·         The tumor is coincidental and benign. Not all neuroendocrine tumors are malignant. In fact, most TSC neuroendocrine tumors are not.

·         The tumor is coincidental and malignant.

·         The tumor is a metastasis of the pancreatic neuroendocrine tumor (malignancy).

We do know that it is “low grade” according to the GI Guy.

And it is difficult to say that the tumor is a recurrence of cancer because the nature of  my cancer (a pancreatic neuroendocrine tumor)  is such that I will never be in remission.

The good news is that we have caught this early and that the tumors on my pancreas and liver remain static.

I am scheduled to see Dr. Zu on July 27^th for my regular monthly appointment. However, it would not surprise me if he wants to conduct a series of additional tests this week before we decide on a treatment direction. Of course, speculation is the enemy of happiness and contentment, so I am happy to spend time with Christine, soaking up this monsoonal weather. Of course, with faith and the right mind-set, we can weather any storm, right?

Thank you for your prayers, good vibes, and positive thoughts. I will post more information as we find out more.

With love,

Andrew

Preliminary Biopsy Confirms Neuroendocrine Tumor

Dear Friends, Family, and Colleagues:

It has been an exhausting day, to say the least.

The short and quick news is that the preliminary biopsy confirms that the growth, located between my rectum and bladder (below the seminal vesicles), is a neuroendocrine tumor. We will not know the full pathology for at least a week. I plan on calling Dr. Zu on Monday to discuss these preliminary findings, and to formulate a plan of action.

What makes this confusing is the nature of neuroendocrine tumors. The one on my pancreas and the one on my liver are malignant, but have been treated successfully for four years with Afinitor. Tuberous Sclerosis, with which I was diagnosed in 1979 when I was 12, can also result in neuroendocrine tumors (and SEGA tumors, a benign tumor I have in my brain). Dr. Zu believes that the genetic expression of my tumors is determined by my Tuberous Sclerosis.

What we know tonight that we did not know before is that the tumor in question is a neuroendocrine tumor.

Beyond that, we will see what Dr. Zu and the full pathology report shows.

So many of you have supported Christine and me through this trying time. A hearty thank you to Margaret, Sandy, Will, Joe and Sharon, Andy and Erin for being with us today.

I assure you that I am resolved in my faith and belief, and am prepared to confront this challenge with vim and vigor.

With love,

Andrew

Biopsy is Tomorrow

Dear Friends, Colleagues, and Family:

Well, this makes it "real" as Christine said. Brings us right back to where we were four years ago when this whole thing began. It is too surreal...

I saw Dr. Lajin today for my consult.
He showed Christine and me the CT Scan, but neither of us could even see what he was pointing out.
He confirmed that there is a "growth" between my rectum and bladder (what a good friend calls the "in-betweenis").

In order to determine the exact nature of this "growth," Dr. Lajin will probe the area with an ultrasound camera that will provide a clearer picture of the "growth." In addition, Dr. Lajin will use a needle to extract a sample of the tissue for pathological examination.

I will be under conscious sedation.

A pathologist will be on hand to monitor the ultrasound.

I will complete a cleansing routine tonight and tomorrow (hello porcelain!).

Initially, when Dr. Lajin checked his schedule, he was booked until the 28th. Somehow, he made tomorrow work.

Needless to say, Christine and I are doing what we can to manage the reality of this situation.

We plan to go to Boll-Weevil in Santee tomorrow after the procedure. Nothing like a good burger after a probing experience!

With love,

Andrew

Good News...

... Dr. Lajin had a cancellation and I will see him for a consult tomorrow at 2:15 p.m.

Amen! Bring it on, Baby!

Andrew

Referral Has Landed

Good news: my referral to Dr. Lajin has been approved.
Bad news: my appointment is July 29 - two weeks away - although I have been placed on the "waiting list" should someone cancel.

Let's hope for a cancellation!

Andrew

Label Me an X-File

Friends, Family, and Colleagues:

If I am an X-File, then Dr. Zu must be Fox Mulder!

Dr. Zu called me this morning to discuss this latest "curve ball":

• Growth is non-calcified, about one (1) inch in size, located between my rectum and urethra.
• He does not believe that this growth is medication related, but really does not know what it is (see note above regarding X-File). Perhaps I was abducted by aliens...
• He referred me to Dr. Lajin who will most likely probe the area (think alien probe here a la X-Files) and, through a needle aspirate, determine the nature of the growth.
• I will know more once I have had my consult with Dr. Lajin.

I find peace in the knowledge that each day brings us one step closer to knowing. As Christine often reminds me, we cannot base our feelings off of speculation. Let's get on with this, I say!

Much appreciation to all for your continued love, prayers/positive thoughts, and encouragement!

With love,

Andrew

Referral is in Motion

Thank you for the wonderful support and encouragement during this uncertain time.
Dr. Zu called to inform me that he has referred me for a urological consult and, eventually, biopsy, and that I should hear from the urologist by the end of the week. Dr. Lajin, the gastroenterologist / urologist, is the same doctor who got to know me very personally last year - he performed the colonoscopy and endoscopy to rule out possible bleeding in my GI tract when I suffered from anemia.

I wanted to add that when I think about writing a book about my life, I never once thought I would actually have to write the word "rectum" in reference to my medical experiences.

In the meantime, Christine and I continue to trust that God will carry us through this latest challenge. Ain't nothin' to worry about until there's somethin' to worry about.

Please continue to send your prayers and positive thoughts our way! We appreciate them more than you may know.

With much love and hope,

Andrew

I Never Could Hit the Curve Ball

Friends, Family, and Colleagues:

As you know, I have been experiencing some minor discomfort on my right side that had me a bit concerned. I saw Dr. Zu on June 29 and he ordered a CT Scan which I had on July 10th.

He called me this morning and reported that the scan revealed a "curve ball," a growth between my rectum and my bladder. He is going to consult a urologist to schedule a biopsy to determine the exact nature of this curve ball. This growth is new and did not show up on my last scan in March. The good news is that the tumors on my liver and pancreas have not changed in size.

I would ask for those of you who pray, to pray for us. 

For those of you who don't pray, please send positive thoughts our way.

This is just some more "shit" and "piss" in the life of Myette. We will make it through this. 

Stayed tuned for more information.

With love,

Andrew

Update - 1 July 2015

Today marks the 4th anniversary of my diagnosis. I am fortunate to have access to the best medical care, or more appropriately, doctors who are aware of the most effective medical treatment available to me. Dr. Zu has been a blessing, for sure. And to all of you for your support, encouragement, and love, I am eternally grateful.

Update:

I will have a CT Scan on July 10th to assess the efficacy of my treatment.
In addition, Dr. Zu wants to run another blood test prior to the scan because some of my numbers (i.e., platelets) were off.

And a gracious thank you to Sharon and Joe Duffy whose wisdom during my time of angst has provided Christine me with greater peace of mind. Ain't nothing to worry about until there is something to worry about.

Happy July 4th to all!

Andrew