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

Update

On Monday, March 30, I had a routine CT scan of my chest, abdomen, and pelvis as well as an MRI of my brain to assess the status of my treatment on Afinitor. Of course, while I provide a link to information on Afinitor, I avoid reading it because I don't want to crowd my mind with what is and what could be. I decided three years ago to determine what is and what could be by embracing a positive and joyous outlook each and every day.

What's up next:

• Routine blood work: Thursday, April 2 or Friday, April 3
• Monthly visit to see Dr. Zu: Monday, April 6.

I am healthy, happy, and thankful!

Love to all, especially Christine, who has to put up with me every day!

I will share results soon.

Good news... all around

A word you never want to hear when you are visiting your oncologist is the word "dead" or "death." But Dr. Zu managed to squeeze the word in twice during my monthly visit today. Of course, it was in response to an insurance form verifying the necessity of my Afinitor. According to Dr. Zu, Afinitor has historically been used to treat those with advanced kidney cancer who "are dead six months after starting treatment." He added that my condition is different and that I am "exceptional" (which we all know is "dead on" accurate). I have been on Afinitor for 3.5 years with great success, no tumor growth and a 30% reduction in tumors. Still, I have to remind Zu to go easy with his "dead" pan humor!

Other good news:

Blood work is good!
I am up another four (4) pounds. (See what eating like crap and not running will do for you!)
I got my monthly Sandostatin injection and it didn't hurt! Here's to painless shots in the glute! (Guess you'd call it 'glute-free' of pain!).

And.... here goes.... (imagine a drum roll!):
I passed my comps for my Reading Specialist Credential!
I have to apply to the CCTC for my credential, but I can't tell you how hard I have worked on this.
With much sacrifice and support from the Beautiful Christine!

We are heading to Massachusetts for Christmas to spend time with my family. We will be staying at the Seacrest Hotel. I know how to find the best rates at luxury hotels.... just stay at a hotel when it's winter and no one else is there! HA!

I have much to be thankful for, each and every day, most of all the love and support of my beautiful wife, Christine, the camaraderie of wonderful friends, access to the best medical care, and the opportunity to work with young people.

Here's to a great 2015!

All my love!

An Update

It has been too long since I have updated my status.
So, here goes:

I am well. I have maintained and actually gained weight! Up 5 pounds since September. Of course, my limited physical activity may play a part in that! In addition to working full-time, I have been tutoring four hours a week at the SDSU Community Reading Clinic, and finishing up a Reading Specialist Credential. Three weeks ago, I sat for my Reading Specialist Comprehensive Exam (results this week!), a three-day, insanely intense take-home exam. Three written responses in APA format with source information integrated into the response, and with a limit of 15 pages. Since August, I have literally written over 50 pages! I am finishing up tutoring this week as well as an independent study that will round out my Reading Specialist Credential.

Yesterday, Christine and I attended a wonderful "symposium" at UCSD on Tuberous Sclerosis Complex where we discovered that a new comprehensive TSC Clinic has opened at Rady Children's Hospital! Dr. Trauner shared that the clinic has started a clinical trial for Afinitor, my primary medication for the last three years. Dr. Zu is Da Man, eh? He had the wisdom and foresight to put me on Afinitor three years ago!

I will most certainly avail myself of the comprehensive clinic at Rady's!

San Diego
Rady Children’s Hospital San Diego (RCHSD)/UC San Diego (UCSD) Comprehensive TSC Clinic
Director: Doris A. Trauner, MD
Co-Director: Keith K. Vaux, MD
Coordinator: Cheryl Orphan, RN
Age Range Seen: Children and Adults

To read more about TSC, go to: TSC Alliance

What's up next:
-Blood work Friday
-Appointment with Dr. Zu, December 15
- Travel to Massachusetts to see family: December 22!

Thanks for your love and support!

An update, a shot, and a good report

The school year has begun and I am fully submerged in establishing routines, getting to know my students, and trying to stay balanced. Always a challenge in September. The emotional capital required to teach is significant, and while the year has started off well, I am conscious of the need to stay balanced.

A few bumps have occurred along the way. 

• A student in one of my classes was diagnosed with a case of Pertussis. So, out of due diligence and because Christine and I have agreed to a "self" healthcare protocol after my Adventures in Pneumonia this spring (no waiting until I actually need to see a doctor), I received the Pertussis booster shot after checking with Dr. Zu. I also received my annual flu shot.
• My primary care physician ordered blood work and urinalysis to rule out diabetes due to high glucose levels, a side-effect of Afinitor. Dr Zu reported that my levels are within my baseline, and told me not to worry. These higher levels may explain why I am thirsty and need to pee frequently during the night. I suppose the trade off is worth it: a few extra trips to the rest room during the night in exchange for no tumor movement or growth since I have been on treatment. My latest scans show that the Afinitor is doing its job.

I saw Dr. Zu today for my monthly appointment. 

Good news:

I am up 1 pound!

My blood levels look good!

And I received my monthly injection of Sandostatin. This time, the nurse (1) didn't make me shake the needle prior to my injection; and (2) didn't comment about the size of the needle prior to my injection.

Dr. Zu and I did discuss the importance of vaccinations. And, so, I encourage all of you to get your flu shots this year. Please see https://www.youtube.com/watch?v=ZuiHFg_nfnE.

I am thankful you are in my life,

I am thankful for Christine, my beautiful wife!

Next up:

Dr. Zu appointment: October 20.