Dear God...please send me a sign....

Today I went back to the gastroenteroligist for my second appointment. The first time I went I left feeling a bit discouraged and confused, as you can tell from my previous post. One of the most amazing things about this journey so far is that there are roughly  4 million people in the United States that are infected with Hepatitis C and yet as best as I can tell each person is trying to individually negotiate their way through treatment. While their are some online and national resources out there, many of these are tied to drug manufacturers. At the local level it seems very hard to feel like you have a clear idea of what is happening or what to expect. It is like I am on a personal quest for information and that I have to gather and try to sort out and make sense of. I could not do this with out Lauretta's help.

....anyways....I'm digressing a bit......

I have been praying a great deal lately that I would feel guided and that God would help me to know the right thing to do. Lauretta has also been praying and asking that I have clarity and be guided as I try to decide what to do in regards to treatment options.  So today I was given the go ahead to start treatment. Treatment is kind of brutal...a year of interferon injections and daily doses of ribaviran, both pretty heavy drugs. Some people are unable to complete treatment due to the side effects, but most make it through. I am pretty confident that I will do well, but I would be lying if I did not say that I was a little scared. After we left the doctor's office I did not know whether to jump for joy (because I was going to start actively fighting the disease) or to cry. I asked Lauretta to drive because I was feeling much more inclined towards crying. We drove up the street and stopped in a parking lot where we started to talk and I started to cry.

Suddenly Lauretta laughed and said look, pointing across the parking lot at this:

 

I had been a little bit afraid of the next year, thinking that it was going to be a tough one. But I know now that it will be a Good Year and God will be with me every step of the way!!!!!

I know your thinking I made this up...but honest...it happened just that way! 

God is Good All the Time!

A few miles back...

The following is a post from a support group website that I belong to written a couple weeks ago. It casts some light onto some of the things that I have been experiencing. One of the things that is so striking to me already is that I am going to have to be my own case manager and advocate. It is unnerving how common this disease is and how little resources and support there is available in South Carolina.




Passing on the Queen

Sunday, August 2, 2009 | A Rambling story
 

Thursday I  went to the Gastroenterologist  all fired up and ready to do battle! I took a list of questions in with  me and was in a pretty good mood. The nurse that did my vitals told me that I would love Amy, the Nurse Practitioner, and that she was the "Queen of Hepatitis C". Things were looking good.

When Amy came in she was very reassuring, letting me know that I am probably not as much of a Biohazard as I was feeling the other day! In spite of what the nurse at the urgent care told me, I probably have not given Hep C to my kids or even my wife!  I knew that….but hearing her tell me was very helpful. (note: Thank GOD, I now know that I am the only one in my family with Hepatitis C!)

Things were going pretty well and then she began to talk about treatment. As she started in talking about responders and non-responders I could feel myself starting to drift off.  "It is chemotherapy but it is a different kind of chemotherapy, milder and over a longer period of time than for cancer". (Is she trying to tell me that this is going to be a kinder, gentler chemo? Hmmmmmmm…I'm not sure that I buy it)…..

…….At this point I can feel myself drifting up towards the ceiling. My brain is also drifting, but in a different direction, having apparently cut ties with the rest of my body.  "...and sometimes patients who have successfully cleared the disease from their system, relapse after 6 months….".   I am vaguely present.

"Do you have any questions?"

I glance at my list in my hand and answer timidly, "no, thank you for your time" (shhhh…don't wake the dragon). I have quietly conceded the days battle.

I have left almost completely. When suddenly my secret weapon springs to action, almost startling me.

"Are there any alternative or natural treatments that can be used or that might help?" asks Lauretta, my wife.

The Queen is not pleased. "No", she replies as her mouth tightens and the corners curl. "Some of the non-regulated by a government agency herbs actually cause harm to the liver. If they were helpful I would have heard of them and pharmaceutical companies would have picked them up and be selling them".

Lauretta had asked THE QUESTION that I needed to have asked.  Suddenly I realized that the Queen, while she is nice and kind, and pleasant, is in essence a pharmaceutical rep/ salesperson.  She knows Peg and Copeg and everything else is outside of her realm. While this may be satisfactory for many, it is not for me.  Even though I expect that I will do the Peg/Copeg tx I want to feel like my doctor has something more to offer as well. 

I guess my main feeling is that whatever route I choose to pursue, it is probably going to be hard at least at some point and when I reach that point I want to feel like I can have absolute confidence in my careprovider. I know that they cannot guarantee outcomes, and I am OK with that….but they do need to guarantee that they will respect me and try to work as a collaborator in my treatment. I view it as I am building a "treatment team" and while the doctor may have a critical role, so do my wife and I.

I left the doctor's office feeling discouraged and confused, (still only partially in my body) but fortunately Lauretta helped to get me back in the game  (and in my head)by reminding me that I had some positive steps ahead of me to take. We drove over to the hospital and I had blood drawn so that I could learn my genotype and viral load, and I scheduled an ultrasound of my liver. These two things are actually big progress.

Over the weekend I have done some research and I have found another doctor's office who specializes in Hep C! On Monday morning I will give them a call and try to schedule an appointment. Hopefully by the time the lab results come back I can get an appointment with them. I don't need a Queen...or a King.....or even a Princess or Prince.....I need a collaborator.

The Dangers of Traveling Alone

I know that at least some of you are saying.."why are you doing this....why are you blogging about this stuff?"
Over the past several weeks I have prayed, meditated, consulted with my wife and others in an effort to determine how best to handle this situation and to not simply endure, but to fully embrace it. My only real frame of reference is my experience recovering from drug and alcohol addiction. By accepting the fact that I was an alcoholic and addict in 1989 I was able to begin the healing process. I quickly became part of a community as I began to reach out to others who were also trying to escape from destructive patterns of behavior. While I initially connected primarily with people who were coping with similar experiences, I gradually recognized that while we each have our own daily struggles, we all have our own daily struggles. Suffering and hardships are an important part of the human experience and in fact strengthen our character and our connection with God.

O SON OF MAN! For everything there is a sign. The sign of love is fortitude under My decree and patience under My trials.

-Baha'u'llah

Often we feel that our hardships are ours alone and we fail to realize that they cause us to rely on each other. I don’t believe that this is an accident; God wants us to rely on each other. It was only when I had been beaten into submission from drugs and alcohol that I was ready to ask God for help. God came through! This experience also required me to ask others around me for help, something that was not particularly easy for me. They came through as well! Although I did not realize it at the time, my mind and heart were being opened up to an entirely new reality; one which has been much more fulfilling than I could have ever envisioned! My struggle with addiction, which at one time isolated me from those around me, connected me to the people around me at a very profound level. Unless and until I was willing and able to admit that I needed help could I get any help and begin to experience a sense of unity with other people.

In trying to figure out how best to cope with the recent news that I have a chronic disease, my first impulse was to try to hide this from others. I was fearful and embarrassed, afraid that others would think less of me. Within a couple days I quickly realized that by trying to keep a “secret” from everyone around me, I had to build walls and remain guarded with everyone that I spoke to. If I told someone, and then asked that they not tell anyone else, I was putting them in a challenging position. At times I felt like I was not being honest with people around me, as I was giving vague and half true answers to my friends and family members. I believe that truthfulness (even if it makes us a little uncomfortable) is the cornerstone upon which healthy individuals, families and societies are built.

Truthfulness is the foundation of all the virtues of the world of humanity. Without truthfulness, progress and success in all of the worlds of God are impossible for a soul. When this holy attribute is established in man, all the divine qualities will also become realized.

-Abdu'l-Baha

Based on these two realizations; the universal nature of hardships and the importance of truthfulness, I decided that the proper response to being diagnosed with a life threatening disease is to talk about it openly and honestly. I believe that such an approach has two potential benefits. The first is that I think that it is the healthiest and most healing approach for me personally. I (and my family) can benefit from the support and prayers of friends and family around us. Secondly, and more importantly I fervently pray that at least one other person can be inspired to reach out to those around them and ask for help in coping with the hardships of their life. I hope that through this I can be able to support those around me as well.

The scary things in life are always scarier when we feel alone. This blog is a humble effort to encourage an ever-widening circle of love, in hopes that none of us will ever feel that we are traveling alone.

"Well...How did I get here?"

And you may find yourself living in a shotgun shack
And you may find yourself in another part of the world
And you may find yourself behind the wheel of a large automobile
And you may find yourself in a beautiful house, with a beautiful Wife
And you may ask yourself: well...how did I get here?

-David Byrne

On June 26-28 I went with my wife and a couple of dear friends to a Buddhist retreat center in Western North Carolina. For three days we prayed, meditated, sang Sacred Verses from the worlds religions and danced like Sufis (think whirling dervish)! This is not something that we typical do, but a vacation for the soul if you will. The spiritual energy that I could feel rising within and around me was unbelievable. As we past the weekend in silence (when not singing) I could feel an inner peace and strength growing. Along with this inner peace I could hear a voice from within telling me to go the doctor and get a physical.

On July 2nd at 10:22 am I stopped by a local walk-in clinic and asked for a complete physical. What ensued was rather disturbing...a brief discussion with a physician assistant, a glance in my ears and mouth and an order for bloodwork. At the time I was mystified, as I felt like it was by far the least "thorough" exam that I had ever had a medical professional give me. 48 hours later I was informed that my liver enzymes were significantly elevated and more blood was requested. On July 9th I returned to the walk-in clinic and was handed a computer generated print out that stated that I had Hepatitis C. I think that I will never forget the look on the nurse's face as she told me, and I will always wonder if she could see me as I floated away up into the corner of the room as she continued to talk to me and tried to reassure me.

Now....some time has passed....and I have moved from that point (though I have to be honest...I am still floating around at times...wondering what is going on). But now, I know that she did not give me bad news....she gave me news that may well allow me to continue to live a much longer and healthy life! The PA who I thought had given me the worst physical of my life had ordered the one lab test that I needed!

Yesterday I was driving and I was yelling along with the Talking Heads song "Once in a lifetime". I heard the line, "and you may ask yourself: well how did I get here?" And I heard myself yell, "by the Mercy of God".

The next part of the journey...welcome aboard!

Over the past couple decades I have discovered that the thing that I cherish most in life is "the journey". Each of us travels through this world on our own individual journey, and yet at the same time we travel together. This blog is my attempt to capture and share my journey with others and begins with me standing at a significant crossroad in my life. Having recently been diagnosed with a chronic disease, Hepatitis C, I am faced with some big choices about the path I will choose.

While I suspect that I will have thousands upon thousands of choices to make on this part of the journey, each with an implication for my overall health, my sense is that I am now faced with one of the most significant that I will need to make...this is the choice between "Hope" and "Despair".

At some points in my life I would have had a hard time making this choice. Fear, anger, insecurity and lack of faith were the main drives which determined my choices. Today I believe that even some of the hardest things that life confronts you with, things that you pray would never happen, actually provide us with opportunities to grow, to feel God's Grace and Mercy and to experience love...these are the signposts on the path of"Hope". This is the path that I am choosing, although I may need your encouragement to stay on this path when the journey gets hard. My road map and North Star for this journey are the Writings of Baha'u'llah. These Writings have provided a consistent and unfailing source of inspiration and understanding since I first read them in 1989. At this time the following quote seems particularly relevant:

O SON OF MAN!
My calamity is My providence, outwardly it is fire and vengeance, but inwardly it is light and mercy. Hasten thereunto that thou mayest become an eternal light and an immortal spirit. This is My command unto thee, do thou observe it.

(Baha'u'llah, The Arabic Hidden Words)

Welcome aboard the journey.........