Walking in Leukemia / Lymphoma walk

Hello, all.

I am walking in the Light the Night walk for the Leukemia / Lymphoma Society. It is an organization that devotes a 1/3 of its money to research, 1/3 to supporting providers and 1/3 to information and trainng to patients.

If you are able to, I would appreciate your donation to the society. The link to my fundraising site is: http://www.active.com/donate/ltnPortla/1803_DrGDClark

My best,
Greg

Is it one year, already?

If any of you are reading this still, after so long without a post. I just wanted to put up that I had my 1 year followup PET scan last week and it was completely negative. It was the PET scan of a normal person. I didn't write any, but the spring was pretty gruesome. I had a nasty sinus infection then bronchitis. Because my fatigue mirrored that when I was diagnosed and because the bronchitis symptoms mirrored those caused by the original tumor blocking my lung from draining (leading to pneumonia and pericarditis), I was convinced that I was relapsing. I made about 5 visits to my Dr.'s medical group. Finally, a lovely man told me that I have something like post-traumatic stress disorder.

You may remember some earlier posts in which I compare my experience to coming back in the world like a vet does coming home from war. What foreshadowing that turned out to be. I scheduled my PET scan on the appropriate one year mark, although I wanted it right after my bout with bronchitis. That would have been wrong on two accounts - lymph nodes may have lit up simply because they were working overtime to unblock my bronchus and secondly they need to wait one year which seems to be the magic number for relapse.

Waiting was the hardest part. I waited for the PET scan then I waited for the results. My primary care doc, a lovely, lovely person was watching for my results to be dictated called me at about 5:20 last Friday. When I saw who was calling, I could scarcely answer the phone. He told me that the results were completely negative. To say that I celebrated that night would be an understatement.

I have been haying (bringing in 20 tons of hay) all weekend and yesterday. I feel perfect, like a 20 year old. By the way, I am celebrating my 45th birthday. Because of treatment, I am telling everyone that I am officially nearing my halfway point. (did I imagine this in September of 2004? NO!) None of this would have been possible without the wonderful care of my many doctors - Matriciano, Masterson, and Dhanes (naming only those three I saw the most of) and my wonderful wife who did more than anyone could know to get me better.

May 22, 2006 - Abby Road

The Beatles sang on Abby Road – ‘And in the end, the love you take is equal to the love you make’. I know there are several levels of depth to the song. One level, is of course, to receive love you must give love. I know that with my wife and children I gave lots of love by providing a home and all. But, I didn’t really do much for the community who supported us during my cancer. I mean, you sort of expect it from your family and may even take it for granted. What you don’t expect is the support that you get from the community. I was an active Cub Scout leader, sort of active in Boy Scouts, active in the church but that’s it. When Tammy’s friends Lisa and Karen organized the Moorpark Airlift of food, they really out did any kind of benefits that I may have provided to someone.

So, I am looking at Abby Road in reverse. I helped my late friend Don in a small measure and my boss’s assistant Pam (who just started her own journey through cancer). I know that I need to do so much more. God gave me this gift and I intend to use it. I signed up for ministry formation through my church. I’ve gone through two classes and a retreat. Sue, our pastor, asked me what I’d like to do within the church. I said I wasn’t quite sure. She asked me whether I’d like to work with the youth group and confirmation. I told her that that wouldn’t be my first choice, that I’d like to help people who are going through a tough time with their illness. So, she signed me up for working with the confirmation kids. I don’t get to choose, and that’s the way it should be.

April, 2006 - Retreat

I wrote this in April, but didn't post on the blog site. I am trying to convert the blog to a memoir and put it there.

I went to a retreat with my ministry formation class this last April. I want to close my memoir by sharing a quote with all of you. Just before the closing ceremony, I was working on this memoir, editing two different blogs - the one about chemo being a lifesaving drug rather than a poison on page 18 and the one about my hips being hollow and that chemo is essentially a poison on page 43. At the closing ceremony we all placed our ‘plan’ for the ministry formation (what we intend to do) and each of us in turn selected a rock with a carved cross in it. On the back is a quote from the bible that we are to read to the rest of the group. Mine was from Deuteronomy 8:15: He led you through the vast and dreadful desert, that thirsty and waterless land, with its poisonous snakes and scorpions. He brought you water out of flint rock.

Cryin’ in Church

I think that most people cry in church during weddings or funerals of loved ones. Well, call me a sissy or something worse, but I find myself crying at nearly every church service. Yesterday was no exception. We go to this small church near our home. It must have about 100 or so attendees at the 9:00 AM mass. My family and I always sit in the right hand pews. I don’t know why, but that is how it is. Just ahead of us sit an older couple. The man has to be 80 years old. His wife looks much younger, but she could be in her 80’s. I’ll bet that they’ve been married 60 years. I want to be with Tammy when I am 80. I want our grandkids to come to Grandma and Grandpa’s farm to ride the old horses that live there. I can’t tell you how much this affects me, seeing old married couples together. It reminds me of the diamond commercial where a young, engaged couple walk by an old woman in a lovely hat, holding hands with her old husband, wearing a nice beret. The younger woman looks back (I think they are on a tandem bicycle) and the older woman smiles. There is a younger couple who sit behind us in the same church. They just got married a week or two before we came to the church. Tammy and I are in the middle of these two, having been married for 22 years. The young man seems like such a nice, mature person that any advice that I could give him would be information he already knows. I would just say this: Cherish each minute. Love her more than you thought possible. Remember how fleeting youth is. The irony is that the reading this week was from Job 7:1-7 Remember that my life is [but] a breath.My eye will never again see anything good. The eye of anyone who looks on mewill no longer see me Your eyes will look for me, but I will be gone. Life is wonderful, beautiful, but not permanent. My life demonstrates all these attributes. I took myself too seriously for too long. I have always loved Tammy and my kids but I wish that I were more mature in my love for her earlier. Men can be so childish and I know that I have been that.
I was horse riding today. At the barn, I was describing my book to a woman who also rides there. I told her that after cancer, I do not have time for people and situations that are not fully honest, healthful and positive. Living outside that which is important to me is not possible now.
I realize what a gift that I’ve been given. I have had the opportunity to view my mortality up close and strip away things that are not (in business speak) value added. My wife, children and family; my ‘work ministry’; my nascent ministry in the church what ever that becomes and finally the private side of me are the only things that I allow any air play now. I know the saying ‘all work and no play make Jack a dull boy’. Focusing on what’s important makes Jack a deep boy.

The warranty has not expired on my treatment yet

I sent Dr. Medical Oncologist II an email. His group is part of the same company that I work for so I found his name in our directory and fired this off:

Dear Dr. Medical Oncologist II,
I am the referral patient you saw earlier this week for follow-up testing for Hodgkin’s. I had my PET scan yesterday and, even though I intellectually believe that all is well, I am on pins and needles waiting for the results. I am told you may have received the scan image yesterday and may receive the report early today. Would you call me at your earliest convenience after receiving it? I am quite nervous (alternating between worry and calm) about it.
Best regards,
Greg Clark

The truth is doctor that I am worried sick. When you’re in the exam room you can never ask all the questions that you want to. Like, what do you think is going on? I wanted a brain download from him. After I told Tammy about it, she asked a bunch of questions that I wish I had asked him before. I remember when my Grandma Hollenbeck had cancer, my Grandpa tried to help get information that would help her treatment. He was the toughest farmer I ever knew but emotionally and intellectually unprepared for all the questions and information that he would have to deal with. Here I am, educated up the ying yang and working in the business and I forgot some basic questions.

I’ve been praying more than ever. A verse from 1 Timothy keeps coming back - Rejoice always! Pray constantly. Give thanks in everything, for this is God's will for you in Christ Jesus. Don't stifle the Spirit. (1 Tim 5.15) I need to understand prayer better. I will make it the theme of my thesis for my religious formation class because I learned how little I understand it. I have heard that nuns and monks who are in prayer go into some meta brain phase that proves to me they are communing then with God. Ever since my scan and before the results come back I have been trying to understand what is going on in my mind but more importantly what is happening in God’s mind or plan for me. The words come to me: Again, I assure you: If two of you on earth agree about any matter that you pray for, it will be done for you by My Father in heaven. (Mat 18:19). Well, there are many, many people on earth praying for me now. HyeCha – my Dad’s wife activated her Korean prayer group. God understands Korean, right? My Uncle Terry called his “Cowboys for God” and activated their prayer trees. My Uncle Ron asked his church to pray. I called my spiritual advisor – Father Mike – who included me in morning prayers at St. Rose.

I went to communion service during the middle of the week. I wanted anonymity to pray like the Matthew verse tells us to do: But when you pray, go into your private room, shut your door, and pray to your Father who is in secret. And your Father who sees in secret will reward you. (Mat 6.5) I never do that (although now that I’ve gone, I think I’ll go back). It was presided over by a deacon. It made me want to do that. Anyway, before the service, I prayed the Rosary, crying my eyes out. How, God, could this be happening to me? Tears were streaming down my face. Then, I noticed a technologist who I work with. Oh, God she saw me crying like a baby. This goes from bad to worse.

The service started and it was remarkable. I am teary eyed right now thinking of it. The first reading was from 1 Samuel 3.7-9 "Now Samuel had not yet experienced the Lord, because the word of the Lord had not yet been revealed to him. 8 Once again, for the third time, the Lord called Samuel. He got up, went to Eli, and said, "Here I am; you called me." Word of God, come to me. I felt rejuvenated and like Father Mike said, I listened for the little words that God would say to me. It was going to be OK. No matter what God would be there for me. Do I have a greater purpose than cancer? Yes, even if I have it. I left in peace.

Friday afternoon, I got a call from Dr. Medical Oncologist’s nurse who said that Dr. Medical Oncologist reviewed the scan and he is pleased. Later that evening I got an email from him telling me that if the nurse calls, it’s good news. It is negative pending a radiologist’s read. I got a call from him on Tuesday. All my lymph nodes are negative, all clear. What a blessing! I am going to make sure that I do not waste this second chance at my life. I am praying now to learn what God wants me to do. I am in a ministry formation program where I want to work with others who are alone, facing uncertainty, dealing with adversity. Just don’t ask me to take my own medicine. I’ve already proved that I can’t do that.

PET (peeve) Scan

I broke the cardinal rule of my new job. I put an appointment on my calendar and wrote Dr. Medical Oncologist II. This, in and of itself, is not a big problem. He and his group are clients of mine. I could be going out to meet with him to discuss a patient sample issue or the cost of a test. Then I accidentally let it slip to my Boss’s executive assistant that I was going to mass and would she cancel all my morning appointments for the next day? She asked me if I am OK. I assured her that I am.

NPO after midnight. Oh how I hate scans. Nothing good can come from scans. My wife was 20 weeks pregnant about 4 years ago and we saw that she was mis-carrying on an ultrasound scan – right in front of our eyes. I found out about my tumors on a CT scan. Nothing good comes from scans. I know, I know. These would have happened (did happen) and the scan helped us deal with them. Still.

I had an 8:45 appointment for the scan. I got there at 8:20 (still used to Los Angeles traffic) and sat in the parking lot reading Quarantine – a fictional book about Jesus’ time in the desert before his ministry began. It is a wonderful book and helped me during this time.
At 8:30, my ex-boss called me to ask a question. It was eery that he would call the morning of the PET scan. It was two or three days before the funeral of our friend Don who succommed to his melanoma. I told him that my PET was today. He wished me well and I went inside
My PET scanner came and got me. He was just a touch too cheerful for the hell that I was about to endure. It wasn’t physical so much as mental. I am injected with the radiotracer glucose. I close my eyes and try to sleep. I get stuffed into a tube to make Greg sausage. Then, joy of all joys, I get to wait 48-72 hours for a result. The only upside is that I get to miss two hours of work while I have a caffeine headache. Unlike the Alan Jackson / Jimmy Buffet song “Five O’Clock Somewhere” - I’ll take the work.I get all through the procedure and the tech ushers me out. I scan his face for recognition. If there were tumors everywhere, growing out my ears then he might look like a mortician. If I am cleaner than a new whistle then he could at least crack a smile. No, no he’s not trained for that. Never mind. I’ll wait.

Skin

I asked Evan to burn a CD to listen to. I was mildly interested in the mix he would choose or whether he even thought much about it. He handed it to me and said it’s done. I put it in my car stereo and cried when I started hearing the CD. The song he led with is ‘Skin’ about a young girl named Sarah Beth who gets some kind of cancer. Read the lyrics and see if you don’t cry too. I dare ya, tough man.

Rascal Flatts - Skin Lyrics

Sarah Beth is scared to death
To hear what the doctor will say
She hasn't been well
Since the day that she fell
And the bruise, it just won't go away
So she sits and see waits with her mother and dad
and Flips through an old magazine
Til the nurse with the smile
Stands at the door
And says will you please come with me

Sarah Beth is scared to death
Cause the doctor just told her the news
Between the red cells and white
Something's not right
But we're gonna take care of you

Six chances in ten it won't come back again
With the therapy were gonna try
It's just been approved
It's the strongest there is
I think we caught it in time

Sarah Beth closes her eyes
and She dreams she's dancing
Around and around without any cares
And her very first love is holding her close
And the soft wind is blowing her hair

Sarah Beth is scared to death
As she sits holding her mom
Cause it would be a mistake
For someone to take
A girl with no hair to the prom

For, just this morning right there on her pillow
Was the cruellest of any surprise
And she cried when she gathered it all in her hands
The proof that she couldn't deny

Sarah Beth closes her eyes
and She dreams she's dancing
Around and around without any cares
and her very first love was holding her close
and the soft wind is blowing her hair

It's quarter to seven
That boy's at the door
And her daddy ushers him in
And when he takes off his cap
They all start to cry
Cause this morning where his hair had been
Softly, she touches just skin

They go dancing around and around
Without any cares
And her very first true love is holding her closeFor a moment she isn't scared

Stranger in a Strange Land

On Monday, January 9th, I left the building quietly after our staff meeting. Everyone was still there with lights burning. A little early to be packing it in. I knew they knew.

I arrived a half an hour early to complete paperwork. I sat in the lobby with people going through treatment. I cannot join this crowd, I thought. That validates that I am still one of them. I’m not. I am recovered. They were staring at me like I stared at the young man I met at Dr. Medical Oncologist’s office. Why was I here? What terrible disease was the doctor going to tell me that I have? Actually, no one was looking at me. They were busy supporting each other, regaling each other with stories of their grandkids over the holidays. I DID NOT BELONG HERE. Yet, here I am, filling out the questionnaire. “What brings you here”, “Are you bruising uncontrollably?” “Do you have Cancer?” Oh, God. I can’t go through this again.

I met Dr. Medical Oncologist II. He is a very nice, young doctor. When he came in and I saw that he must be about 12, I looked at his diplomas to make sure that he didn’t find his in a Cracker Jack’s box. They appeared to be bona fide. We went through my history, my diagnosis and treatment. He told me (before he examined me) that I have a great prognosis, probably cured. Even were I to relapse, they could rescue me with a stem cell transplant. Early in my relationship with Tammy, she was a bone marrow transplant nurse. These patients died. I can’t have a stem cell transplant. Even if I did and survived, who would feed the horses or work to pay our bills while I was getting treatment? I reasoned that a stem cell transplant is a little more involved than either chemo or radiation is. I didn’t think that I would be going to work each day.

Silent, Stoic, Stupid

Just after Christmas and New Year’s, 2005, I felt a lymph node on the right side of my jaw. Just a geography lesson before I go on. I was irradiated from my collar bone to my abdomen, so my jaw was outside the radiation field. I remembered that Dr. Radiation Oncologist told me that Hodgkins is wildly sensitive to radiation and that it never grew there as a primary tumor after radiation. That left relapse to occur outside the radiation field and what better place for all to see than my jaw. My family was sick during the holidays but when I felt the node, I was certain that the warranty on my treatment expired. When you are in treatment and it’s working, you don’t have to worry because the cancer is being controlled. When you stop, take away the crutch, you’re on your own. Did I feel on my own.

I didn’t want to talk about this with my wife because I figured out that I’ve grown so much and learned so much. I can handle this. (I thought.) I kept it inside and I started to panic. I can’t get sick, I thought. My wife bought me a beautiful car to celebrate being cancer free. My dad bought me a ‘done with treatment’ colt and my mom bought me a cool horse belt buckle and cowboy boots. Plus, I moved my family to Oregon, bought a huge house and a huge mortgage that goes along with it. I can’t go through this again. I can’t.

Before I told anyone, I knew that I had to figure out what was going on. I was going to be silent, stoic, stupid. I found an oncologist, a client of the lab where I work, and called to get an appointment. If you have ever sought treatment during the holidays for anything outside of an ER or urgent care visit, you will know that no one is around. Doctors assume that no one gets sick during the holidays. I called them during the gap between Christmas and New Year’s Eve. I’ve met the administrator there and while I didn’t want to pull strings to get in, I sure tried to pull them. I figured that she could quietly and quickly get me in (without making any noise). It would be wordless, no waiting and I’d hear the news one way or the other. Life is lonely when you’re alone (or when you isolate yourself.) No luck, she was on vacation with her family.

The scheduler told me that I need a referral from my doctor to get in. Since I have fully reverted to my manly ways of not going to the doctor, I haven’t seen anyone in Eugene yet. If it isn’t broken, don’t go to the doctor. What a putz I turned out to be. Haven’t I read my own book? I reached out to the last doctor that I saw – Dr. Radiation Oncologist. I asked the new oncology office to call them for my records. They left several messages to get a referral. No one called back. I called them myself and left messages. The office was basically closed. I couldn’t bring myself to pull the panic button and finagle my way into a referral because that would validate my growing panic that I was sick again.

I called the new oncologist’s office again and begged them to call Dr. Medical Oncologist for a referral. His office complied the next day. By this time, it was January the 3rd. Dr. New Oncologist didn’t have any time on his schedule until January the 9th at 4:00 PM or January the 11th at 11:45 AM. How could I take the 9th? It would be right after my boss’s staff meeting (from which I would have to leave early). He didn’t know that I had had cancer. What could I tell him? I took the appointment for January 11th. Later that same day, I found out that my staff meeting on the 9th was moved to 12:30 PM and I would be done by 3:00 PM. I could slip out of the building quietly and go see him. I called back and, much to my luck, they still had the appointment open. I would have to endure for 5 days.

I just couldn’t wait. I broke down and went to an urgent care facility. I reasoned that I either have cancer or I have an infection. Either way, the lymph node was growing on my jaw. I knew that I would look, soon, like one of those people you see in the New England Journal of Medicine who presents to a doctor with a mass the size of a cantaloupe on their neck. National Geographic photographers would fly to Eugene to photograph the indigenous man with a melon-sized tumor.

On Thursday, January 5th, we had a dedication for my new building at 11:30 AM. I work for a lab that is associated with a catholic health care company. The Vice President for Mission is a lovely nun who believes in healing and compassionate care. They blessed the building in a very catholic ceremony that centered on our mission of healing people. “Pray for me” was all I could think during the ceremony. I am a heathen among you. I am sick among the healers. “Pray for me sisters.” Immediately after the ceremony, I met with three or four of the nuns and with the CEO of the organization. He is an extremely nice man who knows me by name. I feel so connected to the company. How could this be happening to me?

After an appropriate amount of time with the CEO and nuns (eternity is shorter), I ran from the building to the urgent care clinic. I was dressed in my work garb. The clinic manager who knows who I work for asked if I was there to see anyone in particular. I told her that I was there as a patient. “What’s wrong?” she asked. “Oh, you know, the holiday crud”, I lied through my teeth. “Can’t you see the new appendage growing on my neck?” I wanted to ask her.

I saw a very nice doctor. I told him (Just like my priest, I knew I could tell him and he couldn’t say a word to anyone. You know, patient confidentiality) about my Hodgkin’s. He said, “Oh, you are one of the lucky ones with a great cure rate”. “Sure, lucky until I relapse”, I thought.
He felt my neck. The node was tiny he assured me. He cultured my throat (sending it to my lab, breaking my code of silence. Now everyone would know). He looked in my ears. I have pressure building on my eardrums, he told me. This is what is causing your reactive lymph nodes he assured me. The crud in Eugene is industrial strength and lasts about 14 days. Whew, I felt better until I got outside and my mind started racing again. Maybe the eardrums are plugged because the new tumor in my neck is backing everything up. This doctor must not know what he is talking about. Driving back to work, I called Tammy and let her know that I have this tiny node on my jaw and clicking ears and that I went to see an urgent care doc to see if I have an infection. Nonchalant dude, I thought. Then, I quietly asked her “suppose I had a new tumor in my jaw, would it back up my Eustachian canal?” I am over-reacting, she told me. The lymph system and sinuses are separate systems. Well, since the mediastinal lymph node caused my pericarditis, I knew that my new lymph node on my jaw must have been making my ears inflamed. It can’t happen she told me. That evening we had an open house for our new lab before it was completed. We had several of our key clients over, our staff, and the management team. I am panicked, sure that I have a new tumor. How can I be social?

Ambassador for the Blueprint for Wellness

My company has a health screen called Blueprint for Wellness. I'm not trying to sell anything here, but I will say that we (Quest) offers it to other companies for their employees and I can attest that it is a life saver.

Many of you know that last year in August I took the tests (lab) as part of the Blueprint. I wasn't going to do it because I thought I was healthy. Little did I know...

It really started the whole diagnostic cascade that led to my diagnosis of Hodgkin's. So, I get all through all the chemo and radiation and, lo and behold, it's blueprint time again. I wrote a testimonial saying how it saved my life, that I wasn't going to do it because I was too busy etc etc. We published it along with my picture. I didn't think too much about it until yesterday. I was at an employee function celebrating those with 10-35 years of service to the company when, all of a sudden and in the midst of everyone, a woman gives me a big hug and tells me that she's going to do the Blueprint this year just because she read my testimonial. It was such a moving experience to think that I might have helped someone by being open about what happened to me. I am so thankful for the opportunity.

Bottom line. If you can, get your own tests and make sure you're good too.

Love you all.
Greg

An Update

I got an email from a 'Hodgkin's Buddy' asking how things are since I haven't posted in a while...


-----Original Message-----From: Nancy Subject: Wondering about Greg

Hello,

I am wondering how Greg is doing. I have been concerned since I haven’t seen a Web Blog entry for over two months. I have been fighting Hodgkin’s during the same time period and have really received a lot of inspiration and sometimes chuckles from his postings. I pray that everything is okay. If it isn’t, then I’d like to know what to pray about!

I recently had an all systems clear from my doctor. The CT scan and blood work has come back okay. What a relief, but I still have doubts some days. Always the fear that it will reappear.

Please let me know what recent developments have occurred.

Thanks!

Nancy

here's my reply...

Nancy,

Thanks so much for writing. I am doing great. I finished chemo in February and did a month of radiation in April (after many starts and stops). I’ve had a clean CT and PET scan since then. My Dr. is very optimistic about my continued health. I am so pleased.

However, like you, I worry all the time that it will come back. It is such a scary thing. I asked a friend of my wife, who had stage 1 hodgkin’s years ago if she worries about it still and she does. I think it something you don’t ever get used to or complacent about.

I am glad that your CT scan and blood work is clear. I think, like the Chinese proverb indicates, that the journey begins with a single step. One step, one day at a time.

God Bless and our best wishes. Thanks so much for writing.

Yours truly,
Greg Clark

Greg and Tammy Clark
needalatte@sbcglobal.net

Wellness Community

I met Tammy, Patrick, Trent and Olivia today at the Wellness Community - part of a national non-profit Cancer support network. There are social workers and other therapists who help kids and adults cope. We started taking the kids there to an art group for children whose parent / grandparent has experienced cancer.

Today was the perfect metaphor for the roller coaster that cancer is. We had a pancreas cancer survivor who has visited all 20 some Wellness Communities across the country via a Harley Davidson. He is inspirational and was very good with the kids. Every one got their picture taken with him on his bike. At the same time, I heard that one of the kid's father just passed away from his disease.

I am ready already to push the stop button on this rollercoaster. Hopefully each scan will be negative and my day at the theme park is done. At the same time that I worry about the future I think about those who aren't as lucky or fortunate or blessed as I am. I can't complain. I just want off the ride.

Camping at the Oak County Park

This weekend was family camp at the local campground. The campsite was dry and dusty with the temperature hovering around 90 degrees. We ran a pinewood derby-like Space Derby. The kids were nonchalant about the whole thing. It was the fathers who really got into who won. The dust and shouting took a toll on my throat that was just starting to heal from my encounter with the beast. After driving home to take care of the animals, I came back to what would have been a delicious meal cooked over a barbeque. Getting the Cubscout stew past my inflamed and growing throat proved troublesome. I felt like one of those snakes that eats an entire opossum in one gulp.

My throat was wicked sore by this time and then we got to the campfire festivities. I helped Evan run the campfire program (he is working on his Life Scout rank and is doing the communications merit badge that requires that that he is the MC for a scouting event such as a campfire. The last event prior to the closing prayer and S'mores was a call and repeat song. By this time, Evan was quite tired so I 'sang' the call and repeat song 'One fine day, I met a bear, a way out there, I met a bear' (and on and on for 15 verses). I didn't really approximate singing because the throat was feeling as constricted as 20 year old plumbing with hard water. Olivia and weren't going to camp with Tammy and the boys being on the heals of radiation, so we drove home, put the pets in bed and crashed very hard.

This morning we went back and helped strike camp and run a bicycle derby. Again more yelling. My throat feels like strep on steroids. Wicked sore. Plus, the heat of the two days in the sun drove my core temp up. I can hardly wait to go back to work so I can rest! :)

I am through!!!!

I am done! I completed the last radiation treatment today! I am celebrating tonight with my family but am walking on cloud nine today!

Three weeks down and one to go

Familiarity breeds contempt

Fish and visitors smell in three days

Greg gets tired of Radiation in three weeks

These are all true aphorisms. I am quite ready to be done with radiation. It has made it virtually impossible to eat anything solid. I tried a lowfat coffee cake from Starbucks today. You know, the really soft squishy kind. It hurt so bad going down. I had to dissolve it in my chai latte to get it past my swollen throat. The area of my throat just below the uvula (the funny, dangly thing at the back of your throat) is so raw that swallowing anything solid is painful.

I am reduced to eating liquids (smoothies, soup, coffee, orange juice (a little too acidic). Now, my voice is nearly gone. I have a very important meeting next week with a regulator. I'm sure I'll sound terrific. Sort of like the Godfather. "Madam Inspector, we have an offer you can't refuse'.

My staff is just sad I didn't lose my voice, altogether.

The voice issue and throat problem is supposed to go away soon after treatment is over.

One week left. I'll make it.

A luminaria for my Grandma - Alyce

Tammy and I enjoying the Relay

Lisa (Tammy's friend), Evan and I

At the sign-in for the Relay for Life

Relay for Life

Talk about an affirmation of the power of community. About 100 cancer survivors walked the first lap at the 2005 Moorpark Relay for Life put on by the American Cancer Society. The whole event was wonderful from the teary opening where the survivors were introduced, the reason for continuing research was explained (like any of us didn't get it) and the walk began.

I was talking to a researcher from Amgen who came to give the keynote speech. I talked about the first night knowing something was wrong and how it tore Tammy up (me too). I started crying and she reached out and consoled me. Here we were - cancer patient and cancer researcher.

Then we walked the survivor's lap and I was so moved and humbled. On the track were a hundred others like me. there were older folks, some my age (several mothers with purple survivor shirts were pushing strollers with their kids), a few teens and a little girl who has leukemia. Talk about powerful emotions.

We went home around noon and came back at 5:00PM so Tammy could do her laps. I walked with her for a while. At 8:00 PM the luminaria ceremony began. There were about 1400 luminarias (paper bags with either in honor of (survivors) or in memory of (loved ones who didn't make it). Not a dry eye in the whole stadium.

I came back the next day to take the 8:00 - 10:00 shift and walked with the Karen Swanson who organized the Simi Airlift bringing tons of food to our house. Talk about humility, thanks and closure!

Pray and think positive thoughts

for my friend Don. He's the friend of mine that developed Stage IV melanoma that has metastesized to his kidney and maybe his lung. He is going to Virginia this weekend to
evaluate a trial. He may also go to Seattle to visit the Hutch. Perhaps I'll call on the Clark Clan there to help he and his wife if they end up staying a while. Please include him in your thoughts and prayers so he can develop the plan to deal with his disease.

Whew, this is easier than chemo

I am officially half way done with radiation and it has gone swimmingly well. Of course, it is a very passive activity on my part, I just absorb the radiation and go to work.

There are some side effects. I haven't turned green yet, nor have I developed spidey-sense. I am getting the classic 'lump in the throat' feeling and I have difficulty swallowing. The radiation tech told me that it will take about as long for the problem to go away after I stop radiation as it took to appear. So, no swallowing swords for at least 3 more weeks. Other than that, no problems.

The tiredness that I felt during the first week is mostly gone. In fact, I feel terrific. Of course, since I said it, waves of fatigue will wash over me soon.

Tomorrow is an eventful day. Lisa, Tammy's best friend, organized a team for the Relay for Life in Moorpark called "Greg's Guerrillas". This is the same Relay that I'll be doing in Van Nuys in June. It's all for an outstanding cause. I am carbo-loading right now for my Survivors' Victory lap. I want to have my energy up. Tammy is staying the night with her so they can walk around the clock. The goal is to have one team member on the track for 24 hours straight. I'll watch the kids and it will be a blast. Have a great weekend!

Spirituosity

One of the benefits of being a survivor (and I think those who are going through treatment without having taken the moniker yet) is the level of spirituosity you develop.

God requires you to look through a different lense when dealing with this kind of disease. When you're knock, knock, knockin on heaven's door, your perspective is necessarily different than when you are young and retain your adolescent superman syndrome. I've heard that there are no athiests in a foxhole. There are no athiests in chemo lounge either. Spirituosity, as defined by me, is the curiosity and searching about spiritual matters. You are forced to slow down, observe and feel things that truly spiritual mystics probably feel every day of their lives. It is sort of like the 'zone' that atheletes get into when they are really well trained. I love there whenever it comes.

I remember one of the early experiences I had was when Evan was playing 'Time of your life' after I started treatment. I could hardly believe the irony of it but it clearly started a spirituosity event for me. All throughout treatment I prayed and continued to pray that I am made into the man that God wants me to be. I admire people with Grace and truly pray for that blessing.

Yesterday I completed one decade of the Rosary during treatment and was driving to work adn decided to finish the other four decades. As I was finishing the fourth decade, I pulled up next to a car where the driver was also praying the rosary. OK, nothing special some might say. But I say, two people (out of the 4,000,000 in LA) praying the rosary on the 101 S at exactly the same time. You expect this at church, but on the 101 S? Needless to say, I was profoundly moved and beeped at the driver to let her know of this blessing and she seemed very moved by it as well.

Several weeks ago I had decided to put my money where my mouth is, so to speak. I enrolled in a 'Adult Formation' process where I can become a certified catechist in the Church. My intense desire to give back to all of you, my Church, my family and God. We are working through the link of the old and new testament now. I believe that there is a direct link to me. I have been thinking of writing a post called 'Warning - Dangerous Theology Ahead' where I try to explain my illness and my spiritual development as a result. I have a very Jobian outlook as I have shared before. I don't believe that God causes illness or bad things to happen to people. I do believe that God wants you to deal with life appropriately. No one wishes for a bad thing but often bad things lead to tremendous growth.

I continue to read the book 'Everyday Grace' where the author believes that Grace and Miracles are achievable when you approach God and ask. I am asking every day and am asking even now in this post. I am also reading the 'Purpose Driven Life' and the accompanying workbook.

Spirituosity is a cultivated garden where you are the arborist. Please take it from me to care for the garden now and not during a time of darkness should it come into your life. Even then it is OK, I would have preferred to be where I am now then. But then, what did God want me to get out of this? Maybe it is part of the plan.

My best to all.

Bruce Banner and Me

Like most boys who grew up in the 60's and early 70's much of my leisure time was spent pouring over Marvel comics. My favorite was the Flash whose main character could circumnavigate the globe 10 times during the time it takes me to write this sentance (a precurser to Dash in the Incredibles). I was an equal opportunity comic fan. I loved the Fantastic Four, Superman and Batman.

We all had 'underdog' favorites, too. These were sort of accidental tourists to the superhero ranks. For example, Spiderman was born of a bite from a radioactive spider. The most underdog of them all wasthe Incredible Hulk. He was created due to accidental, prenatal exposure to radiation. Bruce Banner, the Hulk's alter ego, had a rough childhood that led to a volatile temper. Watch out when he got mad! Most of you know what happens next.

Of course, my receipt of radiation is fully planned and intentional. My radiation oncologist - Dr. Miller is a very detailed oriented person who is also very cautious. All of the stops and starts relative to the thoracentesis was because of his desire to treat only the cancer while leaving minimal damage to other tissue. Unfortunately, the delay resulted in numerous CT scans and x-rays that my nervousness grew with each week. Plus, the machine that they were working me up on looked like it was vintage 1970. My nervous anticipation only grew.

Remember that I am a chemist by training and I worked for a year or so at a nuclear reactor at WSU doing research using a technique called neutron activation analysis where we irradiate a sample that we want to count and we detect the elements inside using a liquid scintillation detector and gamma ray detector. I knew what radiation was all about. However, I was much more nervous about this treatment than I was about the chemotherapy. You can watch the chemo going in, you can see that the dose is the same as it was last week by looking at the bag. When it was over, you knew that you received the proper dose. I was less certain about the radiation that I was to receive. I was to be treated by radiation techs, of whom I knew little and on a machine that was built during the Hulk's creation. I was flat out nervous.

I got the call at 8:00 AM on Monday, April 18th that I would start radiation hat day and could I come in at 11:00? I was so nervous that I made my wife and daughter get in the car and come with me. When we got there, the radiation technologist told me that there is 'good news and bad news'. The bad news was that the blocks that they were making were cut to the wrong size. I wouldn't start then. I wondered what the good news was. They asked that I come back later that day. Thank God for small favors, I think.

Tammy and Olivia and I went to lunch together (that turned out to be the high point of the day) and I hung out at Starbucks working until my date with destiny. I was to return at 3:00 PM when I met with Dr. Miller and have my first treatment. They took me into the treatment room on the left, one I never knew existed. Before me sat this ultramodern accelerator that would be my treatment device. They laid me down and put the blocks in the machine that would focus the gamma rays to my chest, neck and shoulders. They protected my thyroid with a block that directed the radiation away. OK, I was starting to get a little less nervous at this point.

It took three technicians to line me up exactly using lasers that focused on three 'tatoos' they put on me so the alignment would allow perfect administration of the 'healing light'. Then, they all beat feet out of the room and I was left alone facing the beast. Don't move!", they admonished me. "When you are paralyzed with fear, movement is impossible", I reassured them.

I had to remove my St. Jude that Sue Coleman gave me but I was armed with my Rosary and the pocket angel that Tammy's mom gave me. I was locked and loaded and good to go. The beast came on and I was busy with the Lord's prayer so I wouldn't freak out. Within 20 seconds it was over. They came back in and rather than flip me over like a burger to do my back side, they rotated the beast under neath me and put in the mirror image block to irradiate me from the back side. They ran from the room again and started the beast up again. It lasted another 20 seconds and they let me down from the table.

That was Monday. I've had a treatment every morning since then. Yesterday was Friday and I am already 1/4th done! It has gone amazingly well thanks in large measure to the professional staff at Dr. Miller's office, to God keeping me in check emotionally and my wife supporting me and encouraging me. I have three more weeks to go. I can do this.

Back in the World

One of the phenomena that Viet Nam, Gulf War and other vets experience is coming back into the world from a surreal place, a place as foreign to them as Mars would be to anyone but martians. Not only were they in a country where they didn't understand the language or culture, they were fighting a war.

I certainly don't compare my experience to the horrific experience that combat is, but I think there are at least several similarities...

First, both soldiers and cancer patients are fighting for their lives. The possibility of death is part of the equation, yet it is unfathomable even for those in it. When facing your own mortality, how can you face it or come to terms with it because you can't even understand it. Yet you always know it is there.

Second, both soldiers and cancer patients are in a foreign place. This is unfamiliar ground, threatening ground, a place from which they may not return. Despite the efforts of health care providers to make it understandable (and I even had a leg up on most being in healthcare myself and being married to an oncology nurse) what was happening was not 'internalizable'.

Third, both soldiers and cancer patients eventually leave the combat zone and return to their lives. Some, like me, commuted to the battle field each week then returned to our jobs and lives. We were never really back in the world fully. We always knew that next Tuesday, for example, we would don our gear and charge the hill again.

Lastly, both soldiers and cancer patients leave some colleagues behind. The grief is unimaginable. Both cancer and war are indescriminant killers. Neither soldiers nor patients can know when / who will be in the wrong place at the wrong time; whose DNA doesn't respond to the treatment. Some, sadly, don't come back to the world. It if for those and future 'those' that we grieve. Survivor's syndrome is real. I have a friend whose cancer came roaring back after only a brief respite. I grieve for him. I also don't know when / if mine will so his grief is partly my own.

Coming back to the world is tough. My family has wondered why I am irritable (grumpy). I try, so hard, to leave the battle field behind, but I am constantly reminded that unlike the jungles of Southeast Asia or the desert of Iraq, my battle field is within me.

Thoracentesis - Ain't gonna happen

'I taught those snot nosed kids how to read CT scans' quipped my Dr. at Los Robles when I innocently questioned him about the results.

rewind back to the start of my appointment Thursday for my Thoracentesis...

I arrived early hoping to get a good seat for my poke in the chest with a sharp stick. I really wanted to get it over and thought if I got there early, I could get started early. Not only did I not go in until 20 minutes past my appointed time, when I got into the changing room they told me that there was an ER patient ahead of me who needed the table longer than previously thought. 'No problem', I muttered, freezing in the flapping open-in-the-back gown that would cover only half of a waif. Not to mention, my nurse (a very kindly woman who would reassure me throughout my procedure) told me that the Dr. wouldn't give me versed or any pain killer because he didn't think I'd need it. Great. Freezing cold, fearing a collapsed lung, not getting any drugs. This was starting very inauspiciously.

Finally, my draft number came up and they took me in. 'Dead man walking' I thought and my RN was playing the same part that Susan Sarandan played in the movie. I lay down on the table and they hooked me up to all kinds of things. It reminded me of the Meaning of Life by Monty Python where the Obstetrician wanted one of those machines that go Ping!. I had a co-oximeter, a blood pressure cuff, ekg leads and an IV.

They lay me down prone on the table. When they realized that I am taller and bigger than their average patient two radiology techs (each of them weighing in at slightly under 100 lbs) tried to pull me down the table. I offered my assistance when I knew that withdrawing excaliber was more in their grasp.

They started to scan me to locate the loculated effusion. Then they re-scanned me. They scanned me a third time. They moved the table down and scanned me again. The Dr. - a witty South African - came in and told me that the efffusion was completely gone. That is when I questioned him and he uttered those famous words - 'I used to teach ...'.

Well, you have probably guessed at my excitement! The effusion completely healed up. The theory is that it was started from my pre-chemo pneumonia and exacerbated by the bleomycin.

The amazing part was that I was feeling a little blue on Tuesday and I muttered a silent prayer 'I need some good news today, God'. I believe he answered me and in spades.

Next post will be later this week or early next after my radiation oncologist attempts to turn me into the incredible hulk. I have the body size for it. Just need some green skin.

Thoracentisis - delay

Tammy and I went to Los Robles yesterday to have the 'ultrasound guided thoracentesis'. Long story short, it did not happen. The pocket of fluid was too small to hit in the normal way. The 'normal way' involves taking an ultrasound, marking the site with a pen and the physician going in on the mark. The don't, apparently, continue taking pictures while he is trying to hit it with the needle. They said that the effusion has 'structure'. When I asked what that meant, they explained that the effusion is likely congealing which is a healing process. They still want to get a sample so I will have a CT guided thoracentesis tomorrow. The radiologist will do the procedure which is essentially the same as the ultrasound version except that he will have the needle in place then start taking pictures to put the needle in place. They will then look at the sample (if they can withdraw any) for microbes or cancer cells.

I also saw Dr. Masterson yesterday. In my paranoia, I thought I felt a lump on my neck. It turned out that I have thrush which is causing a little lymph enlargement. My sore neck is likely a strain of the neck muscle.

Dr. M said that prognosis is usually reflected in the response rate at first. Since my tumor went down rapidly, my prognosis is good. He said that most people, when they stop the chemo (when the course is over) experience anxiety because while they are on chemo, they are treating the cancer. It becomes a crutch. It was a mighty crutch for me. I'll try to let it go, but it is so hard.

Thoracentesis

Yeah, I get to have another procedure!

My last CT scan showed full remission! It also showed the 'loculated effusion' on my left lung getting slightly bigger. So, Tuesday, I get to have a lung tap - aka thorocentesis aka it'll hurt like hell but be a man.

Drs. Miller, Masterson and Gonzalez (my pulmonologist) all think the pocket of fluid (effusion) is a result of the pneumonia or lymph node that blocked the lung. It loculated and then grew due to the bleomycin irritation. Hopefully, the thorocentesis will demonstrate this.

We'll run a cytology (look for cancer), microbiology (look for infection) and other chemistries to evaluate the effusion. Results will be in a week or so. Look at a previous post how I feel about waiting, even though it will be my lab (Quest Diagnostics) running the tests. The only place I like to wait is Disneyland and it's barely tolerable there. Here, I get a tap, wait for days and don't get to enjoy Mr. Toad's Wild Ride.

Relay for Life

I have signed up to be a team captain for the relay for life. The relay is June 4-5 in Van Nuys.

I invite you to contribute to the American Cancer Society and support me in the Relay for Life.

I probably don't have to share, here, my reasons for walking and why I am asking you to donate, but here goes anyway...

I am completely passionate about the care, treatment and support that I received from all of you, my clinicians and other health care providers. I write about it often here.

My company's Vision is 'Dedicated People Improving the Health of Patients through Unsurpassed Diagnostic Insights and Innovation'. Our CEO, Surya Mohapatra reminds us that every major health decision is supported by a lab test. I can tell you, unequivocally, that Quest Diagnostics saved my bacon through these Unsurpassed Diagnostic Insights.

Many of my work colleagues held my samples in their hands to help me get diagnosed (In fact, it was originally the blueprint for Wellness that showed that I had a serious problem brewing.) Then, after my lymph node was analyzed where I was found to have had Mixed Cellularity Hodgkin's Disease, I had bone marrow assays (cytogenetics and flow cytometry) to further diagnose and stage me. Following that, each and every week, Quest Diagnostics helped with treatment (I had CBC's and chemistries done at Quest Diagnostics every week to determine whether I could get chemo that week (and continue to do so even now that I am in Complete Remission).

In addition, I think the developers of the drugs Adriamycin, Bleomycin, Vincristine and DTIC were absolutely certified geniuses. These scientists were, in many cases, supported through grants from the ACS and Leukemia / Lymphoma Society. Without their work, I wouldn't be in remission now. In addition, my health care providers who diagnosed me and treated me were miracle workers who received significant advice on treatment modalities from work supported by the ACS and other important cancer societies.

As you can see, I am passionate about this. I have good reason to be. I am also truly thankful for each of your help in getting me through this emotionally and mentally. I would be completely honored if you would join me and support the Relay For Life and raise funds for this absolutely incredible charity.

The relay is June 4-5 at Birmingham High School starting at 10AM. Yours truly will be walking the survivor's lap at 10AM. I need to raise a minimum of $100.00 and spend around an hour or two on the track. So, I am asking for your support.

Please look at this website to donate: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=89354&lis=0&kntae89354=63B1AF97CE6745588379B998F147B4B5&supId=73307181

Thank you for your support of this fine program and of me during my illness and treatment.

Sick Day

I tried really hard not to take any sick days during my treatment other than those for my treatment days. I went in every other day. You would have to figure that the last treatment would result in the first sick day. I have been coughing all weekend long and had a low grade fever, a few chills and light night sweats. I didn't have any sweats or chills last night so I think I am on the mend but I wanted just to be sure that it went away.

Nervous Nelly

I have a cold that has settled into my chest. Tammy was coughing all weekend last weekend and I guess that it is my turn. I usually get a fever and night sweats when I get a cold and I have been having some the last few nights. But now since I've had cancer, I get really nervous. do these night sweats portend a relapse? I am always feeling my nodes. Soon I'll be like Jack Nicholson in 'As good as it gets' and skip forward twice, back once before going outside. I'll need 24 gross new ivory bars (he used neutrogenia, didn't he?) to wash my hands with.

I have a friend who just was diagnosed with lung cancer and he isn't even a smoker. He has a boy about Evan's age. I feel so bad for him. I tried to comfort him a little and Tammy made them cookies and bread. I feel so empathetic knowing the journey they are embarking on. I pray that it will be bearable for them.

I am still trying to figure out what to do with the rest of my life now that I am a cancer survivor. (I can say that, now, can't I?) I know that I am only 3 days post treatment and we haven't let the body recover from it, but with a clean ct scan and 2 clean pet scans (yes, my scan from Friday was clean!) I think that I am allowed to say that I am a cancer survivor. I know that it could come back and that we are doing the radiation / incredible hulk thing to prevent it. But I am developing a mindset now that I need to think about my PC (post-cancer) life.

I know that, for sure, I want to be a daddy for a very, very long time. I want to hold my grandbabies in my arms. I want to grow old with Tammy and be / look so ancient that they can't tell me from the trees in the back yard. But I also know that I need to do something now to help those patients who aren't as lucky as I am. I spoke briefly to Father Mike about this and he said that people like me who are thinking hard on this are in a period of 'desolation' where whatever the solution is hasn't worked itself out yet. Once people have the inspiration to take the next step that is 'consolation'. I know what cancer is like, I know what healthcare (the other side of the coin) is like. I am trying to see how the two fit together - auxilliary health care provider who is a cancer survivor and is married to a cancer nurse. Somehow it all meshes somewhere. I just need to get it. One of my friend's husband died a couple years ago of a rare sarcoma. She is now a spokesperson for the American Cancer Society. We'll see where this ends up. All I know is that I won't feel right if all I do is send in a few quid to the ACS or lymphoma society (although that isn't a bad first step).

Friday Night Lights

Never saw the movie but like the title. I have a Friday Night Light experience all my own.

I had my follow-up PET scan today (Friday). You get to fast, get injected with radioactive (hence the lights) glucose, and get shoved in a tube. Then, I iced the experience by coming to work. This is all on top of recovering from ABVD treatment Tuesday. To give you perspective about the tube, I am 6'0" and 240 lbs. I am not fat like a bavarian yodler but am definately not petite. You have to spend at least 12 minutes with your arms flat above your head (laying down) while the PET scanner probes your innards. The PET Technologists were iminently nice and helpful, playing Ray Charles 'Genius loves company'. I found that I was using it to time how long until the next transition (moving 6 more inches into the donut.) Here is a link to the exact tube they tamped me into ... http://www.medical.siemens.com/webapp/wcs/stores/servlet/ProductDisplay?productId=16879&storeId=10001&langId=-1&catalogId=-1&catTree=100001,12788,12756*497259760&level=0

I won't know the answer until later next week but think I am probably good to go.