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.

 

Only the Red Sox are anemic now...

Only the Red Sox are anemic now….

Saw Dr. Zu today for my monthly appointment and Sandostatin injection.
Good news! Dr. Zu reports that my blood work looks much better this month than last, and that my red blood cell count is back to my baseline! Hoo Hoo! He attributes the anemia to my pneumonia. He speculated that the pneumonia interfered with my body’s ability to access the red blood cells which caused the anemia. (This is, of course, a lay person’s translation).

So, for now, only the Red Sox are anemic!

Thanks to all for your continued support, encouragement, and love.

Next up: 

• appointment with Dr. Zu July 1, 2014
• CT Scan of chest, abdomen, and pelvis sometime in July

We have reached the end... at both ends!

Family, friends, and Colleagues:

Good news! Today's procedure went very well - with positive results!

First and foremost, the procedue took place in the bowels... of the hosptial... (Once again, I couldn't resist).

I did not find the laxative ritual difficult. Sure, the solution they had me drink (1/2 after 4:00 p.m. and 1/2 this morning) was not the most pleasant tasting, I found it only mildly offensive to my taste buds. And because I did not eat much solid food in the days leading up the procedue, I did not suffer the explosive outcomes I had expected. (Again, do you really think I would let this one slide... ooops, I did it again).

I was placed under conscious sedation and had the endoscopy first followed by the colonoscopy. 
Jennifer and Rosie prepped me, and Patti assisted Dr. Mahmoud Lajian with the procedures. 
While I don't recall much of the endoscopy, I do recall asking questions during the colonoscopy during which I could see the procedure on the monitor. I was not in pain, but did experience mild discomfort. My root canal hurt more.

After about a 15 - 20 minute stint in recovery, Christine and I went to get something to eat, which I stomached just fine.

Now for the rusults!

The endoscopy - The Upper GI:
- I hava a hiatal hernia
- Duodenum was biopsied to rule out celiac disease
- No ulcers
- No tumors

The Colonoscopy - The Lower GI:
- No polyps
- No bleeding
- No tumors
- No tumors
- NO TUMORS!

Next up:
Blood work - follow up on 5/30
Appointment with Dr. Zu on 6/3
Follow up with Dr. Lijian with 2 weeks.

We are pleased with the results, needless to say. We appreciate all the love, support, and encouragement you have so graciously show us throughout a challenging 4 - 5 months. 

When you have a moment, please let Christine know what an incredible spouse, partner, friend, and rock she is. I would appreciate it. Without her love, determination, and faith, I don't know what I would do.

Today is a beautiful day!

Upcoming Tests

Today, I saw the GI Guy - sounds like he works for the government, which given all the crap he must deal with, ain't too far from the truth - for a consultation.

He reiterated some of the concerns that Dr. Zu had re: my anemia. In order to rule out some of these possibilities, I am going to have a colonoscopy and an endoscopy this Friday.

Because I have a history with neuroendrocrine tumors, Dr. Lajian wants to rule out that I don't have a carcinoid tumor in my upper or lower GI tract which may be bleeding.  Neuroendocrine tumors can manifest themselves in the GI tract. And can be benign or malignant.

Of course, this is only one possibility, one of the more serious possibilities. I may also have polyps or other minor common abnormalities that are causing the bleeding.

As Christine always says, ain't nothing to worry about until there is something to worry about.

Thanks for your encouragement and support. We will continue, we will persist, we will endure!

A Look Back

I was talking with a student today after school about the persuasive speech he was working on. Somehow, in our discussion, I recalled NPR's now-defunct program, "This I Believe." I pulled up a particular speech for him - one that related to his topic -, and remembered that I had written my own "This I Believe" essay. Although I wrote this pre-diagnosis, the sentiment expressed herein seems particularly apropos right now. And so I share it with you.

Life presents us with joy and with sorrow. Good times are sandwiched in between not-so-good times, making life an interesting array of experiences and adventures. Family issues, personal issues, relationship issues, work issues, school issues, issues, issues, issues. From an early age, I have had my share of issues. But I suppose to refer to them as issues gives power over to them. I may not have asked for many experiences I have encountered, they were meant to be. I didn’t ask to be the ninth child of nine children, the youngest in a large Roman Catholic family. But I was.  This is the life I have been granted, that has been given to me. And throughout my life, I have had my share of adversity. But it is because of that adversity that I am who I am today. I wouldn’t trade it for the chance at a better, happier, more peanut-butter-and-jelly, perfect life. This I believe: I believe that the human spirit is indomitable, that it can endure hardship after hardship and triumph. Through my experiences and adversity, I have survived. I have come through and flourished because I can confidently proclaim: “Here I am world. This is who I am.”

When I was in the fourth grade, my mom was diagnosed with lung cancer. Being the youngest in my family, I knew my mom was ill, but my dad made the decision not to tell me that mom had cancer. The “c” word did become part of my vocabulary, but not because someone had to tell me what it was and what it could do. I witnessed it first hand. I saw it in the faces of my siblings and the fear in my dad’s voice. I saw it in my mom’s face when she returned from the hospital. I wasn’t told until after mom survived this first bout with cancer that she had been given the last rites. I wasn’t told that she had almost died. I wasn’t told a lot of things. And because of not being told, I knew. I knew that anything that could not be spoken, especially to a ten year old, must be grave. My mom survived her first bout with cancer, and lived a productive, creative, and meaningful life, a mother of nine children and wife of almost forty years. The cancer never fully retreated. Lung cancer was followed by brain cancer was followed by breast cancer was followed by everywhere cancer over the course of thirteen years. My mother died in 1990 when I was not quite twenty-three.

My mother never lost hope during her battle with cancer. Her spirit never wavered; her faith never faltered; and her sense of humor never faded. Even when hospitalized for the last time, she would respond “Great!” when asked how she was doing. “Complain” wasn’t in her vocabulary. In watching her, I saw true strength first-hand.  Weakened and feeble from the ravages of cancer, the strength of her spirit couldn’t have been more evident. It is with the same spirit she lived her life. It is only fitting that it would also be the way she embraced her death.

It is the power of my mom’s spirit that has enabled me to endure some of the hardships and challenges in my life: Sibling rivalries, addictions, and suicide attempts; the heroin overdose and death of my sister; my own encounter with brain surgery; and watching my dad grow older alone. A high school teacher now, I look out on my students and want to tell them that they will make it despite the challenges they encounter in their lives, that they will make it because of the challenges they encounter. Sure, I have my moments of doubt and uncertainty, of days when I don’t feel very good about who I am or the job I am doing, or the type of husband I am. I would say to them embrace the challenges they experience in life. Don’t try to soften the reality of the pain, anguish, or suffering you may endure. For I truly believe that it is in our moments of greatest despair and weakness that we discover our genuine strength. If not for the challenges in my life, I would not have the perspective and wisdom to share in my job as a high school English teacher and coach. I would not have recognized the beauty and strength of my wife, Christine, and the strength of my spirit would not have had the opportunity to pull me through to allow me to realize that life is wonderful, joyful, and full of love.

The Light at the End of the Tunnel

7 May 2014

The Light at the End of the Tunnel

No doubt, I have turned a corner from my bout with pneumonia. My strength has returned, I am sleeping (a lot, I might add), I have put on weight, and I am getting back to a regular routine.

So it came as a bit of surprise when I saw Dr. Zu on Tuesday, May 6, 2014, for my monthly appointment and shot, to find out that my blood levels are way off. While my white blood cell count is stable, my red blood cell count (and all the measures that make up that count) have shown a steady decline over the last two to three months. With Dr. Zu’s vacation, my bout with pneumonia, and my subsequent, brief hospitalization last month, I haven’t actually seen Zu for a routine appointment since February

.

Needless to say, this is not the news I expected nor wanted after a tough few months – and just when I was starting to feel better. Dr. Zu’s primary concern is the source of my anemia. In his words, my RBC suggests that I have lost the equivalent of 2 – 3 liters of blood over the last several months. We have to isolate the source of the bleeding. Because I haven’t had any external signs of bleeding (yes, I know my color has been “off”), he believes that the source may be somewhere in my GI tract.

What does this mean? For starters, I will be taking an iron supplement three times a day. Second, it means additional blood work. And to top it off, it means both a colonoscopy and an endoscopy. Not the light at the end of the tunnel I was expecting – a scope! Lucky me! Of course, these tests will also help to rule out bleeding as the source of my anemia. It is possible that with the medication I take regularly that something is just “off” and we will need to isolate what that is.

While we are not happy with these developments, we recognize the diligence in finding the source of my anemia. As Christine always reminds me: we won’t worry unless we have something to worry about.

Thank you for your continued support and encouragement.

I will keep you posted.