Soup of the Guru!

Well, now I've got to get well! Today I had a very special visit from my dear friend, esteemed teacher and yoga master Manju Jois and his wife Nancy. It was very, very nice to see them, as always, and just brought me much joy. But the best part? Manju's soup! They walked in with a big tupperware container of some of the best soup this side of south India! Manju is famous for his soup, and I regard it as a very real blessing to be so gifted. I remember as a young yogi being invited to Manju's house for a cooking lesson and meal of the resulting soup. Good times! It just made me feel so connected to such a wonderful community. We sat and chatted for about an hour, comparing stories and giving updates. Manju took my name and birth information to forward to a brahmin priest in India for a personal ritual for my health and well being. He also advised me on some mantras that will help my health. Thank you Nancy, thank you Manju. Thanks for the soup and the gift certificate to Sunshine Gardens! The soup has fed both my body and soul. Blessings upon you and your families.

Finding Chemo

Hello everyone. I’ve been remiss in my duties of keeping this blog up to date, and I will remedy that now. My convalescence has been going fairly well. I have been putting some weight back on and also have started some walking! My personal best is about 6 blocks. Not much but a good start. The digestive issues, while still around, seem to be at least manageable for the most part. I get very hungry around lunch time, and can eat well at that time. But interestingly, dinner is not what I look forward to. So lunch is the big meal of the day. So be it.

I was reminded that the plan was to start chemotherapy within 6 weeks of surgery. I was referred to one Dr. Pushpendu Bannerjee, who has his practice in the now well traversed XyMed Building next to Scripps Memorial. I have to say, after clawing my way back to getting my body to some faint semblance of normalcy, the thought of dripping poison into my bloodstream seems a little crazy. But my reasoning mind knows that this is the best option for my long term survival. With my trusted advocate Amy by my side, we entered the office of Dr. Bannerjee. He was generous with his time, answering many questions, and asking many of us. He informed us that the drug of choice is called Gemzar, or, generically, gemcytabine, and how it would be administered. I/we hoped to avoid an IV port, hoping my veins are up to the challenge. I could get my blood tests done at Scripps right here in Encinitas, and would need those weekly, to be sure I qualified for chemo each week. The real issue with Dr. Bannerji is whether I will need radiation. He thought long and hard about this, and admitted that the decision was not his to make. Instead he forwarded me via email 19 pages of abstracts of studies about the effectiveness of radiation in cancers similar to mine. I am to read this, digest it, and then have a meeting with a radiation oncologist in a couple of weeks. So I have my work cut out for me. I really am hoping to avoid radiation. I figure the damaged nuclear plants in Japan have supplied enough as to make it unnecessary to need more. My chemo protocol should get underway in very early May.

I had a wonderful conversation with an old friend/colleague Matthew S, who was very helpful in a lot of ways. Firstly, I had heard that he really liked his oncologist, so I wanted a referral. Turns out the doctor he liked so much is the same Dr. Bannerjee! We also shared the same surgeon, Dr. Bhoyrul! This seemed to endorse the path that I am on. Matthew was also very helpful with some insurance information which seems about to help us immensely, along with other good information. Thank you, Matt, and blessings to your health.

I have not taken any nutrition from my feeding tube since last Saturday, and if I can make it a week, and I think I can, then Dr. Bhoyrul will take it out at next visit. He promises that it is a lot less painful than the drains. I don’t know if I believe him. But it will be the final tube coming out of my body. This would be cause for celebration, if I was celebrating these days. Wish me luck…

29 Years!

Hello everyone! Just a quick post to say that today Amy and I celebrate our 29th wedding anniversary. Although perhaps not as festive as anniversaries past, we revel in the simple pleasures and time spent together. I must say again, we are amazed by the generosity of our friends and neighbors, in fact we have been moved to tears on several occasions by the love and resources that have been sent our way.

To my dear wife, thanks for 29 great years; here's hoping for many more...

A Milestone

Yesterday, Friday, was a bit of a milestone in my recovery. It had been a tough week, battling digestive issues, no appetite, etc. Then on Thursday morning, at the end of my tube feeding, Amy and I had the idea of opening up a pro-biotic capsule into the water that fills the syringe that flushes the tube. In other words, we were introducing the beneficial flora right into my small intestine. This, I might add, is definitely not standard medical practice so we were taking a bit of a chance and venturing into unsanctioned waters, so to speak. But lo and behold, within a few hours I started feeling better. Markedly better. It was apparently a gamble that paid off.

Back to Friday, and my doctor’s appointment. I have been waiting anxiously for this day to arrive, since it held the promise of the removal of my surgical drains. What a pain those drains had been to my life, getting in the way of just about everything. We arrive at Dr. Bhoyrul’s office a little early, and the waiting room was filled. Fridays are “clinic” days at Dr. B’s, and a steady stream of patients were called back to the exam rooms, and then leaving one by one, until it was just me and Amy left. We were called back to the exam room, where we sat in the same place we had sat almost exactly one month ago. I recalled being sickly and scared when I first met the good doctor, and he sketched out the intricacies of the Whipple procedure on the white board that hung on the wall. What a month it had been. The roller coaster of the last 6-7 weeks played in my head. Here I sat, after major surgery, weak, but minus one tumor and plus one functioning bile duct. But I digress…

As we waited in the small exam room, Amy sensed my anxiety, and asked me what I was worried about. I told her that I didn’t know what was involved with the drain removal or if I could handle the disappointment if for some reason the drains needed to stay in longer. She laughed at my concerns, told me not to worry. A moment later, Dr. Bhoyrul swooped in with apologies for making us wait (unnecessary) and we exchanged hugs and formalities and then got down to the business at hand. A review of the last week, discussion of calories and protein requirements, a vitamin protocol, etc. Then he looked at my drains and agreed it was time for them to come out. He extended the foot of the exam table so I could lay flat, and proceeded to glove up and get some scissors to snip the sutures that held in the drains, all the while keeping up a banter about something that totally eludes me know. Then, without one bit of warning, he proceeds to pull on the lower drain. HOLY MOTHER OF GOD!!! The pain was shockingly intense! I let out a blood curdling scream. What I thought would be 3-4 inches of tubing turned out to be about 18 inches, and I could feel it snaking its way out from deep around my intestines. Every inch that came out was excruciating. I lifted my head to see what the heck was happening and the first thing I saw was Amy’s face, with her blue eyes big and round and her mouth in a silent “OHHH”! Before I could regroup, the dear doctor set upon the second drain and the whole process repeated itself, scream and all! I had no idea that there was that much tubing inside me, and Amy told me later that the last 6 inches were “flat, like fettuccini”. You can imagine how good that felt coming out. Dr. Bhoyrul just smiled and said, “Now you know why I scheduled you to be the last patient at clinic today”, meaning he didn’t want my screams to scare his other patients. Glad to help, doc. I was a little shaky for the rest of the day, but woke up today with a fine appetite and feeling quite a bit better.

I will feel much more mobile without those damn drains, and hope to start some forays out into the world in the next few days. Hope to see you around town. Thanks for listening.

So much love

As I sit and drink my coffee, look out the window to a beautiful Friday morning and look across the table at Bruce it feels like life is becoming a bit more normal. Thank God! What a crazy month it has been for the Stephens family at 1047 Guadalajara Drive. The one thing that has kept it from being over whelming at times is all the love and support coming our way from all of you. Our family, friends, students and clients have reminded us over and over how blessed we are to have you all in our lives. THANK YOU!!!!

The wonderful food, kind words of support and encouragement, the help financially, the holistic treatments and the visits have all helped to bring Bruce and I to a much calmer and healthy place. We know that its going to be a long and sometimes bumpy road but with all of you helping us when we stumble I know in my heart we will get through this and come out stronger people.

If this journey has taught me one thing it is that we never know whats going to be around the corner but with our "tribe" by our sides we are much stronger and able to battle the obstacles in our way. Thank you all for being in our tribe.

Much love to all of you....

Dear friends -

Today was a good day. After a string of days that were a bit discouraging with the digestive issues I've been dealing with, today I woke up feeling better. The probiotics may be kicking in, and the warmer weather is much to my liking, especially since I am so skinny these days. Also today, we had our yard cleaned up by a wonderful gentleman named Antonio, sent our way by Johnny B. (Thanks, John!) I am figuring out my dietary possibilities and restrictions, they become a little clearer every day.

I am so looking forward to tomorrow, in that I will get my surgical drains removed. This will simplify my life quite a bit and make me more mobile. I'm talking a possible beach walk, etc. I will post the results of my doctor's appointment tomorrow.

In the middle of a rough night a few evenings ago, i sat alone in my living room about 3am. One is giving to pondering one's life at times like this. Out of me came this poem, which I dedicate to my lovely and amazing wife:

You are Here

You are here

My mind attacked

My body wracked

Unceasing pain

All loss, no gain

And you are here

In delirium I swim

No vigor no vim

Feeble and weak

Only a pillow to seek

And you are here

So many years ago

The vows were said

When young and strong

So unafraid

Now you change the dressings

And give me your blessings

Because you are here

Beyond the time

Above the fray

You could have gone

But you decided to stay

Now my life goes on

When it so easily could be over

Alive today

You must know

So I will say

Because you are here.

-by Bruce Stephens, dedicated to my wife Amy, April, 2011

Reader's Digestion

I’ve done enough reading about the recovery from the Whipple procedure to know that the likelihood of digestive weirdness is quite high. I have been sailing along doing quite well until last Friday afternoon when my bowels decided to exist in some parallel universe from the one I have been inhabiting. I will spare you the details, but let’s just say I was very uncomfortable and my eating and sleeping patterns, already impacted, were disturbed even more. I assumed this was a transitory condition, but by Sunday morning, no real improvement. Thank god for the internet, and the gracious Dr Bhoyrul giving me his personal email address. You see, Dr B is in London this week, checking in on his mother. I could have contacted his colleague he left in charge, and I was loath to bother him on his personal time. But a quick email strategy session led to some over the counter meds and a script for some digestive enzymes and as I write this on Sunday evening, I am feeling much better.

I would also like to apologize to any and all dear friends who had hoped to visit over this time, but I put off because of this situation. I’ll be better soon, and as my energy level improves I would love to visit with each and every one of you.

Also, since it is springtime, one of the busiest times in the garden, we have fallen behind in our chores and duties. Amy, for some reason, won’t let me pull weeds or sift compost. But we have tomatoes to plant and mulch to lay down, etc. If anyone knows of a like minded person, young or not-so-young, who we could hire to help us with our yard/garden work for a day or a couple of half-days, let us know. Now if the Lakers could just win a damn game…