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

Prefrontal Madness

Or perhaps the evils of an idle mind....

Speculation makes us human, but is a slippery slope when it comes to happiness. So because I have had some minor aches and discomfort on my right side - yes, where my tumors are located - and I have had time to ponder the possible reasons, I have struggled the last several weeks with angst and uncertainty. Sleep has been dark and unsettling, my perception melancholic and heavy. Christine quips, "Bitch at me, wait and see," while I add "Bitch at you, talk to Dr. Zu." And so I retreated into this funk until today when I saw Dr. Zu which helped to allay some of my fears.

Here's the scoop on my health - (it's good!):

Generalized aches are difficult to pin down and could easily be side effects from my medication. Dr. Zu is pleased that I am eating well (ain't no doubt about that!) and am physically active.

It is time for my regular CT scan (every three months), so Dr. Zu will schedule one before I see him on July 27, 2015.

My WBC is good.

My platelets are a bit low, which may explain some of my fatigue.

I had my monthly Sandostatin shot.

I made a commitment to Christine not to let my angst get the better of me so I will no longer "bitch at her" and " let my anxieties defer." It is tough enough to live with me never mind when I am sullen! It isn't easy living with cancer. But as Christine says, "No one gave us a handbook on how to deal. We're wingin' it."

I start my summer job tomorrow. I will tutor four hours a week at the SDSU Community Reading Clinic.

And I will continue to stay active - running and walking regularly.

Please send positive thoughts our way.

With love,

Andrew

An update and a box of soap

Dearest Friends and Family!

Good news:
Received my Sandostatin injection yesterday. My vitals are good. I am maintaining my weight, staying active, and eating well. Hard to believe, but the school year is coming to a close. It has been a good year!

Box of Soap:
Or a soap box....
When I arrived yesterday for my monthly appointment with Dr. Zu, the nurse informed me that, due to changes in insurance protocol, I could no longer see Dr. Zu on the same day I received my treatment. I now have to get my blood work on one day, see Dr. Zu on another day, and then get my shot on another day. I mean, really? Can you say money! As if the shot I get isn't enough of a pain in my ______________! The insurance company has dictated this change in protocol. Rather than benefit from the relationship I have with Dr. Zu - going on four years -, I will be unceremoniously ushered from one appointment to the next. The bureaucracy of the health care industry keeps rolling people over with little regard for what is best for people.

Okay, I feel better now.

More good news (just got this):

I called Dr. Zu's assistant this morning to seek clarification and to express my dissatisfaction with the change in protocol. Dr. Zu agreed that is was unnecessary for me to make an additional visit. He made an exception. While this is good news, it bothers me that the insurance companies steamroll people who don't ask questions and don't make a stink, and that, even if they do, it won't make a difference.

Progress Update

Had an appointment today with Dr. Zu, although as it turns out, he had to leave early, so I saw his assistant, Grace. I received my monthly injection of Sandostatin, which used in combination with Afinitor, has had positive results.

My blood work looks good as do my vitals. I have experienced some edema in my ankles as well as some intestinal issues the last ten days or so,o both side effects of Afinitor. I have managed to mitigate the impact of the side effects fairly easily, but I must say that I am hating shoes right now!

Christine and I continue to walk regularly, and I have added running to my regimen, although I am not sure if you can call what I am doing running!

We continue to be blessed with health and happiness, and thank all of you for your presence in our lives.

Next up:
Blood work May 28 or 29
Appointment with Dr. Zu on June 1st.

Love to all!

Update: No progress...

... is good progress - at least when it comes to my treatment!

As promised, here is an update on my progress (or, as far as my condition goes, no progress):

• I saw Dr. Zu on Monday, 6 April, when, in addition to my usual monthly injection of Sandostatin, he reviewed the results of my latest CT / MRI scans.
• To date, my latest scans show no change and "no progression" in my tumors. I remain progression free!
• My vitals look good - which really means they are stable: weight is good, BP, etc.

We did have a discussion about my treatment on Afinitor and why it has been effective in keeping me progression-free. [Please understand that I don't have a condition that will ever be in remission, so the goal all along has been to reduce the size of my tumors and then to limit both the size and movement of the tumors]. Dr. Zu believes that my treatment on Afinitor (and Sandostatin) has worked because - here goes my interpretation - the genetic expression of the malignancies on my pancreas and liver is dictated by my primary condition, Tuberous Sclerosis. Tuberous Sclerosis and Pancreatic Neuroendocrine Tumors both function on the mTor pathway, a single pathway. Cancers that have a single pathway are easier to treat and manage. Aftinitor is an mTor inhibitor [note that both Tuberous Sclerosis and PNET are cited on this page], or simply a blocker of the genetic expression [I know I probably don't have this completely correct, but I think you get the idea].

So, no progress is good progress.

I do want to add that Dr. Zu stated that he expected me to have "progressed" by now. We both are pleased that this has not been the case, and hope that I will remain progression-free on Afinitor as long as possible. In the interim, more and more mTor inhibitors are in development. 

I also want to add that while I am thankful at my scan results, our discussion left me a little flat and increased my angst for a few days. Am I living on borrowed time here (see "Borrowed Time")? But aren't we all?  I am happy to report that I know that I am fortunate and blessed to have access to the treatment I am on, to have Dr. Zu as my oncologist, to do what I love every day, to surround myself with wonderful, family, friends, and colleagues, and to be married to the most beautiful, awesome wife, Christine.

All my love and gratitude to all!

Next up:

Appointment with Dr. Zu on May 4, 2015