Anti-Hodgkins Disease

Walking in Leukemia / Lymphoma walk

2006-08-27T08:53:00.000-07:00

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?

2006-07-11T11:00:00.000-07:00

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

2006-07-11T10:54:00.000-07:00

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

2006-07-11T10:52:00.000-07:00

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

2006-07-11T10:50:00.000-07:00

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

2006-01-20T18:06:00.000-08:00

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

2006-01-20T16:29:00.000-08:00

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

2006-01-20T13:12:00.000-08:00

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

2006-01-20T13:00:00.000-08:00

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

2006-01-20T12:58:00.000-08:00

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

2005-08-06T12:08:00.000-07:00

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

2005-08-06T11:58:00.000-07:00

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

2005-05-17T18:46:00.000-07:00

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

2005-05-15T17:10:00.000-07:00

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!!!!

2005-05-13T10:29:00.000-07:00

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

2005-05-06T16:35:00.000-07:00

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.

2005-05-02T19:50:00.000-07:00

A luminaria for my Grandma - Alyce

2005-05-02T19:49:00.000-07:00

Tammy and I enjoying the Relay

2005-05-02T19:48:00.000-07:00

Lisa (Tammy's friend), Evan and I

2005-05-02T19:36:00.000-07:00

At the sign-in for the Relay for Life

Relay for Life

2005-05-02T19:21:00.000-07:00

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

2005-04-29T09:27:00.000-07:00

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

2005-04-29T09:01:00.000-07:00

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

2005-04-27T13:24:00.000-07:00

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

2005-04-23T06:44:00.000-07:00

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

2005-04-13T06:36:00.000-07:00

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

2005-03-27T09:00:00.000-08:00

'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

2005-03-23T07:55:00.000-08:00

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

2005-03-18T05:59:00.000-08:00

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

2005-03-04T13:53:00.000-08:00

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

2005-02-28T08:09:00.000-08:00

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

2005-02-27T21:38:00.000-08:00

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

2005-02-25T12:12:00.000-08:00

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.

Finito, complete, fertig

2005-02-23T06:15:00.000-08:00

I graduated from the chemo lounge yesterday. Of course, it had to be the longest one yet. They weren't letting go easily. First, I forgot to get my blood drawn Monday so Linda had to do that. Then she couldn't get my port accessed; it took an extra hour to do that. Finally, because I had a cold coming in, she had to debate with me whether I should get chemo. I wanted to quote Charlton Heston, she'll have to pry my cold dead fingers from the chemo chair before I'm going delay this one. Sorry, Linda. Hell would have to freeze over. Then I remembered the medical truism 'Hell hath no fury like a R.N. scorned'. They are the ultimate patient advocate. I realized that I was in for a fight. She brought in a third party. Dr. M himself. He let me go ahead and take it since I only had a cold.

Anyway, I am done. If I wasn't having bleo blahs right now, I'd be doing cartwheels in my house. So, watch out for Sunday when the blahs go away. Not counting the PET scan Friday and the CT scan in the middle of March, I have roughly a month off before starting my next cycle. What scares me a little is that I am catching on to these medicos. They can fool me once, even twice. They can't fool me a third time. They have home court advantage and they know that the patient never knows how it will be going into treatment. Sure, Dr. Miller said that this treatment will be a breeze compared to chemo and, not only that, but my chemo was particularly obnoxious. So now he not only hooked me but is reeling me in slowly. Then wham, halfway through I'll feel and look like a crispy critter. Well, I can take any thing for a month now that i am done with six months of chemo. done with getting the stuffings beat out of me every other week. OK back to normal print and no more shouting.

Live from Simi Valley, It's Sunday Night!

2005-02-20T21:14:00.000-08:00

I was weaned on SNL. My friends and I would crack some beers, watch SNL and laugh our heads off. Two Wild and Crazy Guys happened to be my favorite and my little sister is probably sick of my calling her to this day and saying 'hello for you my little sister' in the croation accent that I did so poorly. I also loved the loud family. Little would I know that it was foreshadowing of the most perfect kind. Of course, burger, burger, chip chip coke coke made me howl every time. It was the perfect way to spend a fairly tame Saturday night that continued all the way through my graduate school. Of course, post-children, who could stay up that late.

Now, Saturday night (OK, it is actually Sunday night, but I am claiming poetic license) has a whole different look. Saturday nights before chemo is like the last night on China Beach before going back to Saigon. This Sunday has that feeling plus a little more. It is a combination of the usual China Beach Saturday night but adding in the realization that it is the Saturday before the last tour in Viet Nam. Tuesday is chemo 12 out of 12. I still remember writing 'Goin to the Dr. and I'm gonna get cheeeeemo' in an excited, giddy mode but clearly trying to hide the enormous fear that I had. Fear soon gave way (forgive me Hunter) to loathing. Of course, I knew all along that chemo was saving my a_ _. But you still knew that you were walking into a prize fighter's right hook after the ABVD started, you were headed back up river. But now, 6 months later I am rushing into the jungle, eager to take point on my last fire patrol kicking Hodgkin's butt.

The other thing that this particular Sunday brings is a weekend with my family that completely validates why I am fighting this so hard. Patrick had a friend staying over Friday night - his first! Evan had his girlfriend over Saturday evening for dinner and bought an electric guitar with birthday money. He got 'Smoke on the Water' down in less than 30 minutes. (I am so proud.) Olivia was loving and clingy in alternating succession. Trent was his sublimely work avoiding self. It was hilarious, I sent him out to work 20 minutes on the patio. Without knowing we were watching, he'd swing for a while then look at his watch. He would sweep for 2 minutes and then lay on the ground for a while then get up and look at his watch. Tammy and I were howling at how funny it was.

Mass today seemed to apply directly to me (as it has every Sunday during chemo, as if chemo magnifies the meaning of religion). The second reading was 'He saved us and called us to a holy life, not according to our worksbut according to his own design'. That one really got to me. I am really trying to figure out what my PC (post cancer) life is supposed be. As I was asking, the second reading was followed by the gospel 'Lord, it is good that we are here.If you wish, I will make three tents here, .... As they were coming down from the mountain, Jesus charged them,"Do not tell the vision to anyone" '. The whole idea was that as Christians we cannot stay in our tabernacle but go out and live by example and serve God. I am just trying to figure out how. I intend to call my sister soon and say 'Hello for you from a wild and crazy guy'. Then, next weekend I'm going to make a burger burger chip chip for my loud family. I won't stay in the tent of my recovery but come out living.

State of Grace

2005-02-17T19:05:00.000-08:00

I freely admit that I am one lucky dude. I have been given a great gift by having gone through this cancer treatment (one dose of ABVD to go) with such a good result on the CT and PET scans. I know that I still have radiation ahead of me. But I feel lucky and fortunate and blessed all at the same time.

I freely admit that during my entire treatment that I have prayed and prayed to God that He would heal me but use this experience to make me a better person. I prayed that very prayer this morning. There is something about suffering and facing the possibility of your own mortality to make you think about many things.

I freely admit that I would not have been able to do this without all of you. That you were my source of inspiration and hope. That you were my Godsend.

I freely admit that I have asked God to use me in the way he chooses. I know that he does have a plan for me and that my having had cancer was part of it somehow. I still don't know or even think that God would cause bad things to happen to people (remember Job). I do think that He does know that I would get it and that were I to make the right choices I would fullfill his plan. In the end, I might not get well, not everyone does. But, but God lays a path with all these obstacles in mind. It is up to us to make the right choices. For the record, I do think that I will remain well.

My oldest younger sister told me that I handled this with grace. I don't know if that is true, but I appreciate the thought. The thing is though, I do feel more grace-filled. I have been reading 'A Grace Filled Life'. And while my life has a long way to go to be grace-filled, I know that through this whole ordeal I have made huge progress down that road.

I also believe that my post-cancer role is coming into focus, although it is still a little blurry. One of my friends was recently diagnosed with a tumor that he is now learning to deal with. I feel able to talk to him and his wife with knowledge and understanding as they start their journey than I could not have possibly had before. I feel enormous compassion for them, obviously, and blessed that God would use me to help them in some small way. Another friend confided to me today that her sister has been diagnosed with cancer. I talked to her about cancer from my perspective. While her experience may differ from mine, I think there is value in sharing and encouraging from a perspective of similar experience. I have been to that mountain. I know its path. I want to share it.

I don't know where this is taking me. I have spoken to my pastor about it a little and continue to pray about it. All I know is that you and God have demonstrated Grace and Love to me and it is close to time for me to pay it back. I can't recall the Beatle's song exactly, but something like 'And in the end the love you take is equal to the love you make.'

Calling all Nukes

2005-02-12T07:07:00.000-08:00

Tammy and I met with a radiation doc yesterday. We talked for a very long time about the current treatment of Hodgkin's. Until yesterday, I really did not think I was a candidate for radiation but now it seems (quoting Mr. Smith) 'Inevitable Mr. Anderson'.

After an hour discussing the biology of cancer he got to my case. He told me that Dr. Masterson really did his job well and that my Hodgkin's responded well to chemo and that all of it seemed to be gone. Now was the time to launch it into the next county, so to speak. Ensuring that every Reed Sternberg cell is dead is critical since I came into this with (near) stage IIIb bulky mediastinal disease. The spleen had very little, but positive involvement that the chemo eradicated. However, the bulky mass in the chest with the 'classic presentation' of nodes in my chest, superclavicular (collar bone) and axilliary (arm pit) regions along with the fact that it is 'mixed cellularity' make me an ideal candidate to ensure complete remission through radiation. Having slept on it makes me believe that it is the right thing to do. As if I have any choice, I live with an oncology nurse who would tie a lariat around me and drag me behind her mini-van if need be to get me there.

I will have roughly a month off between chemo and radiation. My last dose of ABVD (which he said was one of the hardest regimines, made me feel tough) will be week after next. Then I have a repeat PET scan to make sure nothing came uncorked (I don't think so because I feel so good). About two weeks later, I will have a repeat CT scan in the position that they will have me on the nukem table. He will overlay this last CT scan with my original to create a 3D graphic and use lasers to precisely line up the beams. I've never had a tattoo but I'll get one then (only a pinpoint) that they will use to align the lasers. About 10 days after that (first week of April) I will begin a course of 17 radiation treatments, (each lasting about 15 minutes) during the month of April. He left me with the feeling that after that, I am done, finito, fertig.

He indicated that because I have tolerated the ABVD so well, this will be a walk in the park (with gamma accelerators pointed at me, no biggie).

Speaking of feeling well, I feel terrific this cycle. Each has been easier than the previous and this is no exception. I worked Wed-Friday after treatment with very few side effects. I can assure you that I won't miss the post-ABVD feeling nor will I be melancholy that my time in chemo lounge will be done. I am grateful, though, that they have become easier and very well tolerated.

Ocean's Eleven

2005-02-09T06:06:00.000-08:00

I completed number eleven yesterday with one more scheduled in two weeks. Like previous, the morning after makes you feel very cellular. I have been searching for a while to describe just how it feels. Combine the low level nausea (controlled by GlaxoSmithkline wonder drug Zofran and decadron) with this very odd feeling of 'cellular activation'. The best way to describe it is if there were electrodes zapping all muscle cells at a very low level, continuously. Then, throw in the hip fatigue that is caused, I think, by the chemo pressing on bone marrow of which the largest amount is in your hip area. By the way, my red count, hemoglobin and hematocrit is trending lower these days. Tammy thinks my bone marrow is getting tired of the chemo. Well make that two of us.

I see the radiation doc on Friday to see if I have to take limited field radiation therapy or not. Dr. M doesn't think so since I will have, by then, had 6 cycles (12 doses) of chemo. Secondary toxicity increases with radiation on top of more chemo than 4 cycles. Dr. M will discuss this with the radiation doc Friday.

I have a friend who is just starting this journey and I have been sharing with him my experience so he can avoid the negative and use the positives. He doesn't have a diagnosis yet and won't until today or tomorrow after they get tissue. I have hope and know he does of a good outcome regardless of whether it turns out as HD or n-HD. I also met another woman yesterday in the chemo lounge that is just starting. I have no idea which disease she has but she was comforted I think by the fact that I am nearly done. A journey of a thousand miles begins with the first step.

Now, on to the blog title. The waves of side effects have started their high tide and I am looking forward to Ocean's twelve being the grand finale.

Love and thanks to all. Profound gratitude to the huge support that I continue to receive. We had a dinner for twelve delivered last night by the parent of Patrick's friend from school. We took the boys to the no cost art class for kids whose parents have (had) cancer. The support is amazing, overwhelming in generosity and very, very uplifting.

Chemo today

2005-01-25T16:39:00.000-08:00

I had chemo today.

Will (my horse) and I explored some creek washes that overflowed during the recent California rains then Tammy and I beat feet to Dr. M's office.

Linda (my nurse) told me that my white count was excellent (for a juiced up chemo-head) at 4.1, my platelets were terrifice (can't remember the exact number), my hemoglobin was good (~13,8) and hematocrit was good (38.x). My uric acid remains under control, so Dr. M took me off allopurinol.

We got started on time (9:30 - 10:00) thanks Linda's skill accessing my finicky port. Elvis left the building around 1:00 PM. I feel terrific, simply mahvalous for a chemo day. Each one gets better because there are no tumors around to squash. Of course, the chemo makes you feel like you just went through a college bender, but no cellular debris to ruin a good hangover.

Plus, my activity level is high thanks to no tumor burden, thanks to my wonderful wife (she knows that sitting on the couch will cause blood to pool in my butt making it heavier and more anchor-like than usual) and thanks to the fact that I have a cool job that I enjoy and that provides a diversion.

We are getting yet another meal from Moorpark today. Myra is bringing over dinner tonight. Thank you Myra.

I continue to be profoundly humbled and blessed by the community's support, by those at my lab, and in particular by my wonderful family. It makes writing these posts such a treat.

Heisenberg Uncertainty

2005-01-25T16:24:00.000-08:00

There is a theory in physics that says the more you know about a particle's location the less you know about its momentum. I first thought I was hot stuff back when I was a graduate student and I suggested to my brother in law (then a medical student, now a pediatrician) that Heisenberg applies to medicine. I had no idea what I was talking about then (or now for that matter). But here is my theory. We (Tammy and I) were meeting with Dr. M. today and I asked him about what happens after treatment 12 (end of February). I get re-scanned to be sure that all is still gone. What he doesn't know is whether I get radiation or not to absolutely ensure that there are no living Reed-Sternberg or other tumor cells. The problems arei that this comes with added toxicity over chemo, with profound fatigue and increased risk of long term secondary tumors. The upside is that it could improve chances of never having recurrence. I am OK either way if that is what my Dr. says is the right thing to do. He is extremely smart, but we can't pin him down. That is where Heisenberg comes in. We know alot about the stage of my disease (no evidence of metabolically active tumor and the nodes that were visible by CT are the size of normal lymph nodes. We know alot and will know more after cycle 12 when they remeasure me. (in Heisenberg speak that is the position) but we know nothing about the course after cycle 12 (the velocity or trajectory). For a deterministic guy like me, I am pulling my non-existant hair out. OK God, Tammy, Dr. M are all saying patience is a virtue and we'll decide then what is right. Patience Smatience (and Heisenberg be darned) enquiring minds want to know.

No news is good news

2005-01-22T18:10:00.000-08:00

I went to Dallas last week for a meeting. The trip went very well with my avoidance of colds, germs and other evil things for someone who is a chemo junkie. There were plenty of people sneezing, coughing and my respirator, 4 mm gloves and face shield kept all that out.

Just kidding, of course. But the trip did go well. I am preparing for chemo number 10 (after #10 is two more).

I don't really have any new news. That suits me fine.

I can continue to say nice things about the whole town of Moorpark who continues to bring food over. Many huge thanks to Karen S who has coordinated a food drop the size of the Berlin Airlift.

I'll write more after Tuesday's chemo fix. Have a great weekend.

Number Nine in the bag

2005-01-11T16:57:00.000-08:00

I delayed going to chemo this morning because we just had a very nice visit from my Uncle Terry and my Dad. Uncle Terry made a trip down to see us and my Dad was in town for a convention but added time to his itinerary and changed airports to come out and see us. It was a wonderful, too short weekend. Alas, all good things end and Tammy drove Uncle Terry to the airport and I drove to my date with my oncology nurse.

I had to wait in the reception area; it seemed that there was a run on chemo today. After I was seated, Debra tried to start my port but couldn't get a blood return from my port right away. Eventually she prevailed and we got started. The chemo went quickly because she turned my last drip up fast so it went in quickly.

I am now at the Wellness community in Thousand Oaks. It is a art class for children whose parent has cancer. You may visit their website at http://www.wellnesscommunityhope.org/. Both Patrick and Trent attend with 8-9 other kids whose parents have cancer. I am able to compare notes with other parents. One of the parents, a 33 y.o. woman had stomach cancer and we talked a long time about how her kids are coping (she has kids the same ages as our older three.)

I feel really great today. Having the news I had last week just really motivates me to continue to do well.

A whole new day

2005-01-11T08:06:00.000-08:00

Since last Thursday, it has been a whole new day, each day. Today, I have chemo to continue to put pressure on any 'microscopic' tumor and to ensure that any Reed Sternberg cell that didn't get the earlier 8 messages will continue to understand that there is no room in Dodge for me and them. Seriously, we had always planned on 12 treatments, total. I march into number 9 today fully confident and relaxed. Usually, the treatment day is treated with anxiety because none of us knew whether it was successful. It is so easy now to go into that chemo lounge with confidence.

Plus, each treatment got easier. I think this is due to the tumor being gone and to my body's being used to it and to my family's ability to deal with the cruddy 3-4 days that follow. I can do this. I would have been able to do this if the news hadn't been this good. Now it is just a lot easier.

Divine Intervention

2005-01-07T04:32:00.000-08:00

Yesterday, Tammy and I met with Dr. M. Before the visit I kept thinking 'I can't go in there'. I wanted him to explain to Tammy what was up and she could tell me. However, I figured this simply would not do so I took a deep breath and ... ran. After the authorities caught up with me in Cozumel and I was deported back to the states, we did sit down with him to discuss.

He came in and said 'these are great, right?' I looked at him rather dumbfoundedly and said 'uh, no. We haven't seen them. You're the doc; they didn't send them to us.'

We took each scan one at a time.

The CT scan of the head and neck was completely clear. Remember there was a superclavicular adenopathy (swollen lymph node, likely packed with Hodgkin's cells) (above the collar bone) and several in the neck area. Now it is clear. A normal scan. (I was starting to not be able to hear)

The CT of the abdomen also was normal. There was a small node or some kind of spot in the spleen during the first one that seemed to resolve. Dr. M reminded us that even though he told us that I was a IIa, 25% of patients who are a 'II' have microscopic adenopathy's below the diaphragm and really IIIa. Just then, he mentally reclassed me as a IIIa when we started. (My bravado was starting to dissolve at this point)

The CT of the chest showed huge improvement. The 'bulky mediastinal mass' on initial exam was largely resolved. There was one - one centimeter lymph node next to the lung where the bulky mass was before. (By this time, my knees were made of jello).

The chest CT did reveal a pleural effusion (fluid in the lung) or something similar that hasn't resolved yet. Remember that Dr. M didn't start chemo right away because he was convinced (as am I) that I had pneumonia before we started. We'll follow the fluid to see how it progresses. It had very clearly defined lines and didn't resolve like the other nodes did so Dr. M didn't think it was Hodgkin's related. (my head was screaming Oh, Thank God.)

But the best news, by far, was that from the PET scan. Remember PET scan is where they inject you with radioactive glucose. Glucose is taken up by metabolically active cells (dividing like cancer or beating like the heart). The scan from August showed all the adenopathies revealed by the CT. Tuesday's scan was completely clean. The PET Dr. (not to be confused with a veterinarian) (OK, bad joke) reported that the scan was un-remarkable or normal and with no metabolically active tumor. (My brain was nearly at a white-out by this time.)

So, what is next? I have 4 more chemo's to which I will gladly march and sing a happy tune even though you feel like you've been punched by one of those mondo ultimate fighters. We'll remeasure CT and PET then to be sure that everything stays the same. This is sort of the 'mopping up' period. My friend Steve told me the medical term is consolidation. Dr. M still doesn't know if I'll get radiation or not. I hope not and I think he is leaning towards not but we won't know until then.

I hadn't come up with a title for this blog when I started, hoping that divine intervention would give me one as I typed. Then as I wrote 'divine intervention' in the previous sentence, I realized what the title has to be. Divine in every sense. From God, from my God-send Tammy, from my wonderful family, from my amazing community of friends, from my incredible work partners, from my superb Dr. and RN's. Divine Intervention, indeed.

The waiting game

2005-01-05T06:01:00.000-08:00

Healthcare, like Disneyland, is all about waiting. You wait for the best rides at the magic kingdom. You wait in healthcare, too but you don't get to go on Mr. Toad's wild ride when you are done. Rather, you get poked in the arm (or other places, worse), get shoved in a tube (with your arms above your head, don't move, don't get nervous) with magnets or radiation all around, or (like I am now) you wait for the test results. These are only the most important tests of your life (other than those you take to get married or have children) and you get to .... wait.

Now, waiting in and of itself is not a huge problem. At Disney, they put up neat things to look at, e.g. Indiana Jones, to help prepare you for the attraction to come. In healthcare, they don't really do that or you may not come back to the Doctor. But with tests, you must. So, I am making my vow to find something interesting to do while waiting. Perhaps I'll blog a little, perhaps I'll ride Will, perhaps I'll entertain myself with work (a wonderful respite). But I have learned that you do need to find something to do to fill the gap.

Waiting for these results to come back is, in any event, excrutiating. They will either tell me that the treatment is working or not. They will be revealing: either I finish the last 4 treatments or I extend; I get radiation or not (I prefer not); the treatment has worked or not (I prefer that it has). I've heard that idle minds are the devil's playground. He would choose to forment unrest, uncertainty and doubt. I prefer to keep him out of the game. To do that takes a special dedication to that task. To this I must be dedicated.

I will close with another positive thing that I've learned through all this. And maybe it wasn't so much 'learned' as re-discovered. Most of you know that I work in healthcare in the laboratory business. I went into this field for two reasons - (1) it is scientifically and intellectually stimulating for me and (2) I want to help others and contribute to society.

Helping others is what the business is all about but sometimes you can lose perspective. Being poked, prodded, infused, asked to wait, submit forms, fill out forms returns that perspective to you. I don't know where this is taking me, but I can tell you that I intend to do my small part in my corner of the business.

I'll sign off for now but will blog tomorrow after my results (CT and PET) come back.

Number 8 - done

2004-12-29T09:02:00.000-08:00

I had treatment number eight yesterday. I am getting my repeat ct and PET scans on Monday and Tuesday next week. We discussed them with Dr. M yesterday and I asked what he expected. He said that they will no doubt be shrunk but maybe not gone. The size of the mediastinal tumor was fairly large and it could take another 4-6 treatments for them all to go away. He was definately hopeful but didn't want to set up any false expectations.

Tammy and I have sure been praying for a clean scan although I am trying to prepare myself for shrinkage but not complete ablation. I am also having a little difficulty dealing with it. I think the fear is irrational but the emotion is there and usually emotion wins against rationality.

Fear Rational thought

Tumors haven't gone away Tumor above collar bone no longer palpable and I can breath easily at night and on exertion.

I might not get better My anemia of chronic disease has gone away.

It might not work for me 6-8 cycles of ABVD works for >90% of patients.

I may have to endure more chemo Maybe true, but each cycle has become easier and I can get through them.

It doesn't make all the emotional stuff - fears, worry, concern go away but listing the irrational vs. irrational does help. Quoting my Uncle Burns - "the proof in the pudding is in the eating" means that it is what it is and we'll deal with it as it comes. Waiting for the tests / results is a little hard, that's all.

New Year's Resolution

2004-12-26T11:26:00.000-08:00

Oh but to only have one. Actually I do have just one and that is to be rid of these pesky Reed-Sternberg cells. Tuesday December 28 brings my eigth treatment; Monday and Tuesday January 3rd and 4th bring a repeat CT (see http://www.lymphomainfo.net/tests/ct.html) and PET scans (see http://www.lymphomainfo.net/tests/pet.html).

I don't even want to speculate about the possible results; they will be what they will be (oh so Doris Day like of me). That hasn't stopped me and my family and friends from praying that the results will be good.

We still don't know what the followup treatment will be. If I am clean on the 3rd and 4th then I know for sure that I get 4 more chemo's (oh yummy.) If I have some residual tumor I guess that I will have more than 4. I am so glad that it is Dr. M making the decision on this and not me. I would let my loathing of ABVD carry the day. To further confuse things, I don't know if I am a candidate for radiation. I am thinking not, but won't know for sure until later (probably the followup CT scan.)

My New Year's resolution stands - be healthy in 2005. Of course, I also resolve to maintain the spiritual growth and personal insights that I've developed with this disease. Like Lance Armstrong found, cancer or other potentially fatal diseases really focus and frame life in wonderful ways. I resolve not to lose that focus.

I wish for all of you a healthy, purpose filled and meaningful New Year.

Very moving Email

2004-12-22T15:22:00.000-08:00

I haven't blogged in a while since I don't have that much new. However, just today, I just got this email from my colleagues. I was so moved that I wanted to share . . .

-----Original Message-----
From: Vicky
Sent: Wednesday, December 22, 2004 11:10 AM
To: Gregory;
CC: Dennis; Karen; Geoff; Guity; Suzanna; Janet; Douglas;
Subject: Merry Christmas

http://www.laf.org/

My Christmas gift to you...

In honor of Greg, a $100 donation has been made on behalf of the SLT to the Lance Amstrong Foundation Livestrong. I believe most of you arefamiliar with this cancer support organization and have seen the yellow wristbands worn by cancer victims and supporters around the world.I wish you all a wonderful holiday season and look forward to our most challenging year yet.

Vicky

Here is my reply to the group...

Friends,

I could scarcely believe what I read below. I can't even properly thank you, but I'll try. Your donation to the Lance Armstrong Foundation is so touching and moving. It symbolizes to me all the support that you have given me these last 6 months (seems like years, doesn't it?) It is so enabling to have a support group built in like I have with you. Coping with this illness and concentrating on getting better, while not easy, has been possible because of you.

I am completely amazed and profoundly grateful.

Warmest wishes to all of you this Christmas and a healthy, prosperous, happy New Year.

Greg

All I want for Christmas is some ABVD

2004-12-14T05:51:00.000-08:00

Not really, but 'tis the season and I want to be jolly. I start cycle four today with my 7th set of ABVD. Hopefully everything will go well and I'll be a jolly right elf by Saturday rather than the grinch. Last time was pretty good because I consumed copious volumes of fluids (mostly water). Someone asked yesterday whether wine tastes good during chemo. Absolutely not. I try to avoid anything that I don't want to hate forever. Tammy made a lovely salad for a few nights when I first started chemo. It was delicious then. She made the same salad several nights ago and I really felt nauseous. It's that old Pavlovian thing (in reverse). So, I try to avoid stuff that I'll actually want later. Perhaps I should binge on Snicker's bars (my weakness). They would never call my name again.
Anyway, back to the season. I am very lucky because Christmas falls on the Saturday of gap week. Then I have treatment 8 (finishing cycle 4) on Tuesday after Christmas. I probably won't feel like partying like it's 1999. (remember the artist formerly known as the artist formerly known as Prince?). After that, I get ready for a CT and PET scan to see how I've progressed. I guess I really want a clean CT for Christmas. I'll write Santa. Hopefully, I've been nice, not naughty.

2004-12-12T06:12:00.000-08:00

O Tannenbaum

Deck the Halls

2004-12-12T05:45:00.000-08:00

One of the benefits (of which there are few) to having cancer is that it does focus life's events for you and draws out what is important. Just like the Christmas lights of a few posts ago, I wanted to do something else than buy the Christmas tree. I really wanted to take Will on a long ride, but my wife prevailed and off to Home depot we trudged. Olivia promptly fell asleep on the way and we were forced to choose a tree holding a sleeping baby.

The choices included Noble and Douglas firs. They were all wrapped with twine so I was pulling out tree after tree, holding a sleeping baby, untwining trees to choose the very best one. I was secretly horrified about was choosing a tree and getting it home to only have it resemble Charlie Brown's tree. There was one family shopping that found two beautiful Nobles; I was hovering near hoping to snag their gorgeous reject. They ended up taking both so I was on my own. After an hour, I took the plunge and selected a 7 foot Noble and tied it to our van and drove it home.

We strung all the lights, put the angel on top and started decorating. Every member of our family gets a new ornament each year and we all took turns putting ours on the tree. Actually pandemonium ensued and were it not for the rugged tree stand the poor Noble would have toppled more than once as boys jousted for prime display spots for their favorite. Not to mention Olivia doing laps around the tree inspecting ornaments after they were placed. Surprisingly, the more fragile elements were placed higher in the tree.

The tree survived the chaos and all of our holiday spirits were ratcheted up a notch, mine very much included. I truly love the holiday season. This one in particular. Decking the halls emphasizes the season for me and reminds me what I am fighting for. You might say it is a Noble effort.

Inspiration from an unlikely source

2004-12-05T19:55:00.000-08:00

I earned my black belt in Tae Kwon Do about two years ago and, up to last November, I was studying for my black belt in Hap Ki Do (cross between Karate, grappling and ju jitsu). I intend to study it again after I finish treatment. I don't really want someone throwing me around with my portacath in. That might hurt.

Anyway, I got a call from my old sparring partner Frank yesterday. I knew before that he had had some kind of cancer but I thought it was melanoma. It turned out that he had had Hodgkin's Disease. He actually had it twice. Once when he was 24 or so and in dental school and then again a year before I met him. The amazing thing was that he and I were evenly matched. I hated his hook and roundhouse kicks and he hated my side and back kicks. We used to really throttle each other. This was all after he beat his cancer. I am completely amazed and hopeful.

We also compared notes on the treatment itself. We both hate ABVD and the terrible taste it leaves. We agreed that we can taste it even before treatment (a Pavlovian response, only it makes you want to hurl, not salivate).

I really love getting these wonderful inspirations from out of the blue. God must really know when I need them. It makes the coping part a little easier.

The Gospel According to St. Earl

2004-11-30T16:20:00.000-08:00

I have developed something of a ritual on the days of my treatment. Actually, I should clarify that Tammy helped develop this ritual for me. Each morning before trudging off for my semi-weekly ABVD cocktail, I jump on my horse Will. He, of course, wishes that I eased myself gently onto him. Actually, I don't really jump, but I do have to have my movie star fantasies like being a gun-slinger at Muddy Horse Saloon and Guesthouse. This morning it was particularly cold and I was bundled up in my long-sleeve T-shirt, barn sweater and turnout coat. I tacked Will and we went for a long ride (long carry in Will's case) in the woods behind our house. In fact, I went up a road that I hadn't ridden before. It ended on top of a hill with sweeping views of Simi Valley and the camp where Native Americans lived centuries before.

As I descended from our house down the access trail to the woods, an image of my maternal Grandfather Earl came into my mind and I thought of him the entire time of my ride. He passed away several years ago at over 85 years old. Anyway, he is significant in my life just like most grandfathers are for their grandchildren. In his case, he was a farmer and a rancher. There are many wonderful memories that I have of him. Probably the most enjoyable though, was the collective, years-long memory of him encouraging me to ride horses. He was a true cowboy; I am just an amateur. Hopefully wouldn't yell at me for riding in that sissy English style; rather would probably be proud that I am fond of horses like he was; like his son Terry (my Uncle) is; like his great-grandson Evan and great-granddaugher Olivia(my son and daughter) are. He lived on his horse when he was running cattle; he was a sherriff's posse member and rode parades with his horse. I think it was therapeutic for him. One time he even rode Prince into a tavern in Othello.

I bet he would agree with the quote that "life is best viewed from the back of the horse" which is why this post is 'The Gospel According to St. Earl'. He was a saint in my mind and I was sad to see him go. But the life lessons he gave stay with me, his other great-, grand- and children to this day. He seemed the model for working hard and playing equally hard. He was an excellent role model for young children to follow. I am glad that I had that time with him and that I thought of him today.

My ride ended and I got ready for my treatment totally grounded. Being on the back of a horse really does that for me. What is important, I think, as I go through this and as other cancer patients go through their treatment is to remain grounded using whatever resource or technique does that for them. I am obviously lucky and profoundly thankful that I am healthy and strong enough to ride. My advice to anyone who would ask is to stay with something you loved before getting sick. Use it to see you through back to health. If you can't, due to physical limitations connect using a physical activity, stay connected with a mental, spiritual or other method. I have heard of some people: cooking even though they may not feel like eating; working as much as their treatment allows - continues the feeling of worth and importance to the community; traveling to new places with people they love; grounding themselves with low intensity yoga or meditation. It all maintains that vital link from the cancer patient to the well-person. It is working for me.

Tonight I shall light a candle in tribute to St. Earl.

Christmas Lights: A double dose of theology

2004-11-29T05:24:00.000-08:00

I continue to do my morning prayers since contracting Hodgkins. The obvious beseechment is that I am healed etc. etc. etc. I am sure God is saying, 'don't you have a have a more original request, one that is a little more challenging?'. I have also been praying for wisdom and guidance and that God would use my cancer to make a better me. I can hear God sighing, 'ah, that is a little better'.

Yesterday was the first day of Advent and we had a new Deacon at our Parish. He is newly ordained and I was impressed with one of the stories that he shared (and the fact that he, too, needs God's gentle reminders). He was at his brother's house the other day and his neice asked him if he wanted to paint rocks with her. He probably wanted to watch the Lakers or Fear Factor or something much more important. He replied, 'I am sort of busy; can I paint rocks with you tomorrow?' She answered him, 'If God gives us tomorrow'. That sort of woke him up and he realized that the football game could wait. The Deacon was impressed by this 'sound theology' from a 4 year old.

I have been discussing theology a little with Steve, a friend of mine at work who happens to be an orthodox Jew. Whenever I say 'see you tomorrow' or ask whether he'll be at the meeting next week he always replies 'God willing'.

Well, this all came crashing home yesterday. Traditionally, the first day of Advent brings one chore for me that I usually do reluctantly each year: put up the Christmas lights. I don't know why, but it is a task that I never look forward to. It might be that we always have neighbors like the Griswalds in National Lampoon's Christmas Vacation who put up enough lights that makes the street lights dim when they plug them in. This activity is a cross between artistry and construction (neither of which I am particularly good at, which is probably the real reason that it isn't my favorite activity). Anyway, we were driving back from Costco and Patrick asked if I would put them up today. Before I could answer 'well, it is getting late...' or 'I am tired, can we ...' or some other lamo excuse, a little voice reminded me 'you don't really know if you'll be here next year'. Now I don't want to get morbid on you, and I really, really think that I will get well. In fact I feel so much better now than I did at the end of August. But the fact is that I have cancer and some people don't recover. Besides that, I could drive to work some day and have a big rig eat my little car for breakfast. I told Patrick 'sure' and we got all the lights out when we got home.

Patrick helped me de-tangle all the lights and held the lights for me while I was up on the ladder. Evan helped by putting lights up on the Bridal Path rails. Trent made cocoa for everyone and Olivia helped by running over the strands with her car. It turned out to be a blast for everyone. I am not sure (no one can be), but I truly think that I'll put up lights for many, many seasons to come. I just think that I'll look forward to them a little more next year.

2004-11-23T18:04:00.000-08:00

Ice skating with the boys

2004-11-23T18:03:00.000-08:00

Life goes on - Thank God

Thanksgiving Week

2004-11-21T07:47:00.000-08:00

I read '50 ways to beat Cancer' right away after finding out that I have HD. One of its instructions is very a propos this week. It tells you to be thankful for your treatment and particularly for those who are caring for you. I have really tried to embrace this key point and thank those who have supported me. I want to do it again, for the record.

As I look toward the Thanksgiving week and begin my annual mental list of things to be thankful for I always begin with my family. My wife is particularly incredible. We have been married nearly 20 years and I can't even list all the good times we have shared. She has been particularly wonderful now. Very few cancer patients can boast that they are married to an oncology nurse who knows exactly the right thing to help my treatment.

My kids have all taken turns caring for me. Each has dealt with it in their own personal way and all have been heartwrenching and beautiful at times. My mom, Dad, step-mom and mother in law have all contributed to my care by helping us out by providing food, love, care for our children and much needed emotional support.

I have blogged much about the community. We just finished last night one of the meals that one of our friends brought over four days ago. Each meal lasts at least two nights. The nourishment is one thing. The caring and emotional support is so valuable.

My work colleagues have been wonderful, too. When I am unable to make it in, one of my staff picks up the slack on top of their already busy jobs. My boss and work colleagues have stepped up when I need their help. My schedule has been hectic with treatment, with integration and they have tolerated my wierd hours during treatment week - not only not mentioning it but being supportive when I am their. I can't write enough how much it means to me.

So, as you can see, I have much to be thankful for. No one can be thankful about cancer but one can be truly thankful for the love and support you receive and for the lessons God teaches you while facing it.

Happy Thanksgiving All!

ABVD in Detail

2004-11-16T19:36:00.000-08:00

The ABVD regimine contains the four drugs given individually.

Adriamycin (30 ml of red koolaid-looking liquid (which means of course that I'll never be able to drink cherry koolaid again)). It is a S-phase antimetabolite whose job is to disrupt enzyme or DNA function in a tumor cell. The bad news is that it causes hair loss, nausea, bone marrow depression and may cause heart issues later if given too much.
Bleomycin (like adria, it is pushed by the nurse via a syringe). It is G-2 phase dependent, clear liquid. S, G1, G2 and M are different parts of the cell cycle. By going after all phases of the cycle, you can disrupt the tumor cells more efficiently than by waiting for the cell to enter one part of the cycle. Bleo is a (get ready for a mouthful) anti-neoplastic antibiotic and is sometimes given against certain bacteria. What it does well is prevent one of the components of DNA from getting made into DNA. Therefore, it disrupts DNA replication necessary for the mean and nasty Reed Sternberg cells from dividing. No DNA; No cell. Its downsides include lung problems if given too much. More common side effects are hair loss, fever and getting cold easily.
Vinblastine is a M-phase dependent 'vinca alkaloid'. Vinca alkaloids stop M phase by disrupting formation of spindles that help DNA line up and get ready to divide. Go Vincas Go!. Their side effects include nausea, hair loss, muscle pain.
DTIC (dacarbazine) is a bag of chemo bag the nurse hangs at the end. It is an alkylating agent, attaching itself to DNA. It can cause hair loss, white count depression and anemia.

It is an interesting mix that I think is doing a number on the bad guys because I continue to feel so good during gap week and so bad 2-3 days after treatment.

Treatment Five - In the can

2004-11-16T17:09:00.000-08:00

I completed treatment number five today. Only 3 more until I re-measure everything.

Things went really well today, but I didn't have to do much. I just sat there reading books, listening to the healing music my sisters and mother sent me. It is actually pleasant (until you realize what they are doing.) Hopefully Wednesday - Friday won't be too gnarly, but if they are, I know that 'this, too, will pass'.

Cindy from Moorpark brought dinner for us tonight! A Mexican fiesta. Thank you Cindy.

Tammy took Trent and Patrick to a 'Art for kids with parents who have cancer' class. Tammy called to set it up and the woman said that only kids whose parents / grandparents have cancer can attend. Tammy told her that I have cancer. The woman said 'Great, they can attend' She paused for a minute and 'oh, I didn't mean 'Great, he has cancer. I meant Great, they can attend'. She was pretty flustered and did not mean it that way. I am so grateful that the community has such a thing. I can just feel the IOU's piling up. The Moorpark / Scout crew, the community, my family, my work friends. I have a year's debt of gratitude to re-pay. Gladly, of course.

Treatment 5

2004-11-16T08:37:00.000-08:00

As I put on my 'battle dress' for my treatment, I remembered a trick that I used during my PhD General Exam and Defense. I would watch Full Metal Jacket or Platoon and realize that what I was about to face pales in comparison.

The other night I watched Saving Private Ryan and this morning I read about the Marines in Falluja and Basra and realized again that what I am facing does indeed pale by comparison. I am getting treatment to get well. They are getting shot at. I thank God for putting this in perspective for me. When I start feeling sorry for myself (usually happens Thursday or Friday following treatment), I'll try to remember this.

Well, it's off to number 5. I am over one third done. I am thankful for that, too.

Yoga for Drill Sergeants

2004-11-15T21:02:00.000-08:00

I have resumed some exercise and, let me tell you, I feel like I've been away for years not months. I am taking this class that is purportedly a yoga class at our gym. It is actually yoga for hardbodies, teen agers and boot sergeants. They are all cheering the teacher on to more leg lifts straight to the ceiling. I grunt out one rep and collapse into a heap on the floor. I am determined not to let HD provide me with excuses. It is getting a little easier. The instructor doesn't have to rush over with Oxygen after each set anymore.

Support base

2004-11-10T16:55:00.000-08:00

Oscar, one of the Scouts in Evan's Troop brought over dinner last night. In fact he (a 12 year old) made it! I continue to be overwhelmed by the outpouring of support and hope and encouragement and help that people have provided so far. It is beyond comprehension how supported our family is. We have meals coming through Thanksgiving. Karen, probably the busiest woman in Moorpark is taking the time to coordinate it and she'll even bring us a dinner later.

We write Thank You's, I blog thanks and say it as often as possible but that only scratches the surface of how appreciative we are. Our load has been seriously lightened. We helped a few families in the Holy Cross Parish when they needed it and I was impressed by Tammy's dedication despite being busy running 3 kids to school. Now, it has been returned to us in spades and I really get it. How does that Beatles song go 'the love you take is equal to the love you make.' Believe it.

Saturday Morning

2004-11-06T07:18:00.000-08:00

I just had the most amazing realization. Tuesday marked 4 treatments (2 months so far) and I am finishing the second part of the second cycle. Dr. M. has planned 4 full cycles then re-screening. So, officially, I am half-way through the initial treatment cycle. I still don't know if I will have radiation (I sort of doubt it) but won't know until later. If, in January, I am cancer free (based on CT and PET scans) then I'll have two more cycles. Each chemo really sucks (sorry for my choice of words, but it pretty much sums up the experience.) You taste and feel it for days. It permeates each cell (I know that's its job and I am thankful for it.) You begin to feel like a walking chemical factory.

By Friday evening, you are just wiped out, sick of the feeling and looking forward to sleep so you can ignore it. Then Saturday, glorious Saturday arrives. You are still jittery (not in the pleasant, too much Starbucks sense) but like each cell in your arms and legs are alive. What gets you through is that you know it will soon go away. Later today, if the cycle remains true to previous cycles, the jitteriness will subside and a sense of normalcy will develop. That is the feeling that I long for because then I know I will then have 8-10 luxurious days of feeling terrific - almost normal.

The family seems to have settled in with this thing. E, the oldest (nearly a teen,) ignores it with perfect detachment but underneath you can tell he is having issues. P, the middle boy is taking excellent care of me, wearing his emotions on his sleeve. T, the youngest boy, has made me more cards, books and letters. It is really cute but sad because I know that it is his way of dealing with this. He continues to pray that I get better. O, my 2 y.o. daughter, has no idea of course that I am sick. She just knows that when she is ready for sleeping, I am right there with her. Tammy (my wife) continues to think this is just a serious cold. I haven't told her yet. (just kidding).

Well, I better go stir the oatmeal, call the troops downstairs and march strongly into gap number 4!

2004-11-05T18:13:00.000-08:00

I am coping with hair loss with this nice toupe'

Round two, cyle two

2004-11-03T07:20:00.000-08:00

Yesterday I had my second chemo treatment of the second round. At the end of this 15 day cycle, I will be through 1/2 of the 4 rounds of two treatment cycles. Again, I am sure there is a valid medical reason for saying 1 round is devised of two treatment cycles.

I met the most interesting man yesterday. Probably because his experience (he has nHL - non-hodgkin's lymphoma) is just like mine, the manner in which he is dealing (he is reading all the same cancer books, doing the research and meditating / praying in a manner using the Dyer books) with it similar to mine. That is not, of course, what made him fascinating. Apparently his type of nHL may not be curable yet his spirit of optimism is fantastic. I felt blessed being in the chair next to him. Ordinarily, as you know, I sit plugged into REM singing about the impending flood, reading one book or another. This time, I sat in rapt attention listening to him relay his story, trying to understand his optimism and very much enjoying the four hours. He told me that he was inspired by my story and manner of dealing with this. This was not some sort of mutual admiration society. He was genuine and caring and concerned. All of which blew me away again.

I get treatment from my Dr's (all $25,000 or so this far) that is truly (I believe) a gift from heaven. The moral support by the community has been an enormous blessing (thank you again Lisa Marie, Karen, Kelly, Carol, Cheryl, Monica, Rose, Anna and Gina for helping our family so much). The other cancer patients who I have met have been a real source of inspiration. Overall, whenever I tell people about this, I have to just be thankful. It has (and will continue to) changed my life, my perspective. I will have much to be thankful for at Thanksgiving this year.

God bless you all.

Last minute campaigning

2004-10-31T17:40:00.000-08:00

I want to set the record straight so you won't accuse me of being a flip - flopper. Yes it is true that in one earlier post I said 'I'm going to the Dr. and I'm gonna get che e emo' and in a follow-up post (yesterday) indicated that I am not looking forward to Tuesday. Let me be perfectly clear (visualize this, I am raising my arms, fingers on both hands in a victory sign, shoulders rolled forward). I did make both statements. No, they are not inconsistent.

Read my lips, if chemo'd (chemoe'd if your last name is Quayle) there will be no new tumors. That's right, if chemo'd there will be no new tumors.

Finally, I am promising to implement on Tuesday 'Chemo of Mass Tumor Destruction'. Tumor cells will be given no respite. I will make them hide in a cave, then seek them out and kill them. My platform should be perfectly clear. No new tumors.

Thank you for your support and God bless Dr. M.

Gap Weekend, Saturday - Oct 30

2004-10-30T13:40:00.000-07:00

We have had a great weekend. I feel great (a little nervous, maybe about Tuesday). Trent and Patrick and I went to a Royal HS football game last night and had a blast. We ate tri-tip sandwhiches,drank hot cocoa, had popcorn and cheered Royal on to a lopsided win. Today, the whole family hiked up to the 15 foot tall white cross that stands on the hill above Simi Valley. It was a very nice hike. Then, to top it off, Evan and I went on a nice horse ride in the woods behind our house.

Gap weekends are wonderful because you are the farthest away from chemo that you can get and you feel terrific. What this is teaching me is that, after the cure, I will feel this way all the time. It gives you sort of a look at what it will be like and gives you something to look very much forward to.

Of course, you can't help but worry about the treatment to come. The treatment itself is painless. You just sit in a chair and get infused, confused and bemused. The way you feel 2 days later is what you worry about. Cruddy would be a gentle, G-rated description.

I do try to compartmentalize it because it isn't here yet, but the thoughts of dread sometimes leak through. One of my favorite Clavell novels - Shogun - had a scene where John Blackthorne - the English ship pilot (Anjin-san) was traveling to Edo with Masako. She was telling him that their relationship was ending at the three bridges at the outskirts of Edo. He focused on the three bridges and the end to their relationship and became both depressed and angry (who wouldn't?). Sensing this, she told him (at that moment in time) the bridges don't exist for them (or something to that effect.) I really try to follow this wonderful advice but it is hard.

Glenda the Good Witch is telling me to repeat after her-
"Tuesday does not exist yet.
Tuesday does not exist yet.
Tuesday does not exist yet."

Ode to the gap

2004-10-26T20:00:00.000-07:00

Actually Haiku to the gap

The fine space between
notes - largo or stocatto;
reveals the composer's will.

The space between two
chapters of a tome allows
our nightly rest.

Each fortnight chemo
carves inroads in my disease
spirits suffer too.

After the snow melts
birds dance in the spring frost
whose song creates this?

78 RPM

2004-10-26T09:25:00.000-07:00

The weirdest thing happened Monday morning at around 1 AM. I usually wake up at this time to drink some water and go back to sleep. When I sat up in bed, I kid you not, the room spun at nearly 78 RPM. It wasn't the slow spinning after too much good merlot but at a rate that I felt like I was going to pass out. I lay back down quickly which stopped the spinning.

I called the Dr. and spoke to Linda my primary RN there. I went in around 2:30. I told her about the spinning and also about the fact that Friday - Saturday (and a little Sunday / Monday) my skin and muscle cells (particularly in the arms and legs) felt jittery and alive (like too much caffeine). She drew my blood and did a brief exam.

She thought the jittery-ness might be nerves. I told her that I am not nervous or anxious. That just isn't part of my nature. Then she took my blood pressure sitting then standing. The top line (systolic) dropped by 10 mm Hg when I stood up. My CBC (blood count) came back with a white count of 2.7 and a hemoglobin of 12.8. I probably have slight postural hypotension (like what you get when you stand up too quickly). I just have to get up slowly and allow the body to equilibrate.

Do you remember an earlier post where I indicated that I am showing positive gomer signs? I just ticked another one off the list.

Gnarly, Dude

2004-10-24T15:43:00.000-07:00

Just when you start getting cocky, just when you think you have it licked - KAPOW (I could write lines for Batman; Holy Screenplay, Robin!). Chemo hits you like a ton of bricks. After two long days Thursday and Friday, I really started feeling the effects of the chemo Friday night and much of Saturday. It feels like your cells and skin and nerves are all lit up with a poker or cattle prod. It didn't really resolve until late Saturday afternoon. At Tammy's insistence I drug my carcass out of the house and rode Will (my horse). When I got back, I felt wonderful almost like my old self.

I have continued to feel great all day today. Good thing, too. We took Trenton and his buddy to SharkTale for Trent's birthday. Whew, good thing I didn't have borderline nausea ...

Chemo really makes you appreciate the small things in life (like not hurling). I can't even imagine voluntarily doing this like I did during my Frat days in college. What was I thinking?

Really chemo makes you appreciate the ensuing gap week.

The morning after - III

2004-10-20T22:44:00.000-07:00

Do you remember the Poseidin Adventure with Shelly Duvall swimming through the upside down 'love boat' to rescue Captain Stubing? Actually she as rescuing Ernest Borgnine. As she was swimming through the frigid sea water the song kicked in 'There's got to be a morning after If we can hold on through the night We have a chance to find the sunshine Let's keep on lookin' for the light'

My morning after is proceeding well. I am actually looking a bit like Shelly Duvall these days. Tammy along with our Scouting friends have kept my weight up nicely. If I make it to the Olympics in 2008 I'll be wrestling Rulon Gardener not some lightweight.

I woke up a little more trembly than others but I don't know if it is because Olivia was up half the night. I think the decadron wearing off makes you a little jittery. Probably don't need much coffee this morning :)

I didn't mention before, but Dad and HyeCha are here. On the first day, Dad busted his rear doing a bunch of projects that needed done around here - replaiced the glass in the barn, filled in cracks in the drive. Today, before they leave, he intends to replace a leaky faucet in the yard. HyeCha, who is Korean, continued the meals on wheels program for us. They, along with Mom, get the prize for travelling the farthest, having come from Spokane to help Tammy and me and the kids. We always love it when Hyecha is over because we have about two weeks of Korean food in our fridge and pantry. She made the traditional Korean Bulgogi (spiced beef) attended with KimChi, bean sprouts, lotus root, rice, and a few more veggies that I have difficulty recognizing but no difficulty eating.

Maureen McGovern's song concludes : "There's got to be a morning after We're moving closer to the shore I know we'll be there by tomorrow And we'll escape the darkness We won't be searchin' any more" So true, (so sappy) but really so fitting.

Scene Two, Take One

2004-10-19T14:30:00.000-07:00

I started the second round of chemo today. For some arcane reason that I haven't figured out yet, two doses of chemo spaced two weeks apart constitutes one round. I am firmly convinced that most jargon from any speciality, be it medicine, plumbing or history, is designed to confuse and befuddle the layperson into submission. Submission from what you might ask? Submission into not asking any questions. You see, if you are presented with a seemingly insurmountable wall of arcane terminology, facts and data, you will not be tempted to ask too many questions lest you see behind the curtain. Just kidding, of course. I have tremendous respect for the medical pro's who are treating me. I just don't get too far on a train of thought because of their overwhelming busy-ness. This is OK with me because, just like you wouldn't want to eat a non-busy restaurant, you wouldn't really want to have your life returned to you by a non-busy oncologist and team.

Round two is just like the proceeding rounds except that I am starting at a much higher level of health. Of course today I feel great. The decadron makes you feel like Brian Bosworth (remember the linebacker the Seahawks drafted in the 80's who turned out to be lamer than a 12 year old race horse). You can do any thing. Just like any drug (and compounded by the chemo making your buttocks leaden), you are due for a crash around Thursday or Friday. Gee I can hardly wait. But since my pneumonia is gone and there has been two rounds of tumor kill, I am starting at a better place. 'gettin better all the time'

I'll post tomorrow and let you know if I am still high as a kite. I am sure there is a Beatles song that would represent my current state of mind. Something about tangerine trees and marmelaide skies. Although, this from Strawberry fields may be better: 'Let me take you down 'cause I'm going to Strawberry Fields; Nothing is real and nothing to get hung about' Actually there is really not a high like recreational drugs but more of an ability to lift 120 lbs bales of hay with one hand.

Since I believe that life is one big soundtrack, here is the music I was listening to today in the chemo lounge. It is 'E-bow the letter' by REM. Like most music, I have no idea what it is about, but I like it. Here are my favorite verses from the song:

Aluminum, it tastes like fear. Adrenaline, it pulls us near. Will you live to 83? Will you ever welcome me, will you show me something that nobody else has seen?

Smoke it, drink. Here comes the flood, anything to thin the blood.

These corrosives do their magic slowly, and sweet. Phone, eat it, drink. Just another chink, cuts and dents they catch the light.

It is sort of a reference to me of the chemo 'here comes the flood' and 'these corrosives do their magic slowly'. I would guess that Michael Stipe didn't intend it this way, but in a manner of speaking this song has become my anthem.

Cancer Haiku

2004-10-18T16:54:00.000-07:00

I thought it would be kind of fun to write some cancer Haiku. Haiku classically has a 5 - 7 - 5 structure and involves the seasons. Here goes.

Summer- Diagnosis
July
Like the Leaves falling
my body tires easily;
concern is mounting

August
Maple draws its sap
as farmers tap its syrup;
all my branches sag
-

My adult life has been
pursuing test perfection;
how fast tables turn

-

Wore a brave face to
fool my surgeon and my wife;
my heart hid its fear

-

Does my cancer cell
know it is named for Sternberg?
I doubt it cares much

Fall - Treatment
September and October
Winter deapens in
the season of my disease
my heart must first heal
-
Poison is infused
to kill the tumor cells;
hope the map is good

It takes a village - II

2004-10-16T17:03:00.000-07:00

I had three more examples Friday of the overwhelming community support that we have had during my treatment. I'll get to the details soon, but as Tammy and were discussing it, we realized the barriers that come down when someone is facing cancer. People are usually often amazing during a crisis and support comes from places you least expect.

Ginny S, 0ne more of our Scouting friends, brought over dinner yesterday. It was another 20 lbs beauty that we ate heartily of yesterday and will do so again tonight.
I had a meeting with an architect for work yesterday and we ended up discussing my cancer and her mother's own battle with cancer that just concluded successfully a month or so ago. Even though she and I are really professional acquaintences, she offered me her mother's home phone number to call if I need someone to talk to. Then she said to me 'I hope you don't mind me being motherly' (remember this is a work colleague and even though over the past year we've spent considerable time together designing our new lab ours is a professional relationship, not friends) 'but I really want you to take it easy, rest and take care of yourself which is the most important thing you must do.' She offered other motherly advice and discussed a study she is in because of her mother's and her aunt's cancer.
Sue, another work friend, has been supportive of me this whole time. She has had personal experience with a loved one and cancer. She has offered genuine support - kind of my own personal support group. Yesterday she came to my office and shared some more of her own experience and what might be good for me to remember as I fight this hideous thing. Then she told me that she has a group of women praying for me each week and that she prays for me each day. To top it all off, she presented me with a St. Joseph's medallion. I was very moved by her generosity, care and concern.

Earlier I mentioned that Dr. M asked me how I knew if the cancer treatment was working and I couldn't really say how I knew. But there is one thing that I do know. The love, support and prayers of family and friends lifts you up. You can feel it. You really can. But when people who you don't really think knows much about you offers kind, compassionate words and support, you feel humanity at its finest.

I think there is one thing that I would share with another cancer patient or facing another potentially deadly disease. The community is likely to do its thing and support you anyway. That is what communities do, starting from Cro-magnon to now. That's why we have villages. They take care of their own. The therapy in it for the cancer patient is to experience it, live it, feel it. Be lifted up by it. It's humbling but so enabling. It's like 'you have a job to do - get better. Our job is to support you.'

Meals on Wheels

2004-10-14T11:55:00.000-07:00

I totally forgot to post this on Tuesday and I apologize to Karen S and Kelly F. In an earlier post I talked about the entire town of Moorpark helping us (even though we now reside 10 miles east in Simi). Karen S has asked many of our friends through scouting to prepare meals for us after my Mom left.

Kelly F brought the first on Tuesday. She pulled up and out we rushed to relieve her of a 20 lbs packet of homemade lasagne (accompanied by salad, bread and brownies.) The brownies were of course gone that night along with the bread. We enjoyed completely (and I don't exaggerate) the lasagne for two nights and two days. As I type this, I am preparing to microwave my second lunch of lasagne here at work.

If I ever write a book about my experience, and I just might, one chapter will be entitled 'it takes a village' or something to that effect. Tammy and Mom were running themselves crazy the first month (around the diagnosis) to keep up with my appointments, my needs (which were, I'm sure, very few) and taking the kids around. It would have been impossible without the amazing support of our friends. Some watched Olivia, chouffered Evan or Patrick, set up play days with Trent. Now the meals on wheels have begun. I continue to be grateful and humbled by this. Thank you all so much.

Put de lime in de coconut

2004-10-13T10:41:00.000-07:00

My appointment with Dr. M went according to plan (almost).

Dr. M came in and asked how I was doing and I said that I feel great. He then asked me 'Is it working?' I wanted to shout 'How the He_ _ do I know?' Instead, I asked him 'How can you tell, from the white count?' He almost proceeded to tell me 'no silly rabbit ...'. He said 'Here is how I know the treatment is working, one month ago you came in very sick with pneumonia, a large lymph node in your neck, coughing, anemic and barely able to breath. Now, you're not coughing, your breathing is excellent and your color is good. Your counts are fine and the lymph node in the neck is barely palpable. Had I added noxious chemicals to you when you were in poor health and they weren't working, I would have really worsened your already terrible clinical picture, your tumor would continue to have grown and you would be much sicker.' I felt sort of foolish then because I was thinking strictly as a scientist not a clinician. I was Mr. Spock and he was Dr. McCoy. Oh well, I'll continue to be a scientist and not a clinician. The truth is that I do feel 100% better than I did at diagnosis at the end of August (only a month and a half) going from needing to prop up on pillows at night to breath to not being winded any more.

He verified that the ABVD regimen is what reallty is recommended at the conference he went to at MD Anderson in Texas last week. That was the good news that I was waiting for. Further, we talked about the fact that at the 4 month mark (middle of January) I will have another CT scan and maybe a PET scan to see how the tumors are responding. Then I will have 2 more cycles of chemo after that (I think). Lastly, we talked about whether there is radiation in my future. He still needs to check with the radiologist to size the tumor mass / width relative to my lung width to see if I am a candidate for radiation, or not.

Finally, he verified with me that I am doing all the right things - publishing this blog, writing my journal, researching cancer and its treatment on the web. (Hence the title to today's blog). They will improve my prognosis and give me back the control that I lost when I got this dang (OK I was thinking of another adjective) stuff. He has high hopes for me. You can just tell.

Science Tuesday concludes with Chemotherapy

2004-10-12T08:51:00.000-07:00

You may wonder why, in my photo, I could pass for Uncle Fester. Give me a little makeup and voila', I am he. The answer lies in what chemotherapy does for you and to you.

Chemotherapy is a general term that is used to describe cancer-killing drugs but they can be used in other situations, too. Chemo is usually given intravenously (or if you are really lucky, through a port like mine that is a portal right into the superior vena cava. (Any Dune fans out there?). Some forms may also be given orally. There are also other less common administration routes, such as under the skin, in the muscle or injected into the cerebrospinal fluid (CSF).

Chemotherapy for lymphoma varies with the disease. Most forms of chemotherapy destroy cancer cells by preventing them from growing and dividing rapidly. Other cells in the body - other than cancer - also divide rapidly and are affected by chemo. These include hair follicles (cells) hence the 'Fester Factor', blood cells including the white and red cells and platelets. When your white count is low, you are prone to infections. That is why I got the flu shot so I could be protected from the rest of you. Mine right now is about 25,000 / microliter. The reference interval (what 95% of you have) is 38,000 - 108,000 / microliter. You can imagine why I run away when someone is sneezing. Yes, I am running to get them a kleenex. And you thought I was just being rude.

When your red count goes down, you get tired easily. Right now, mine is 4,900,000 / microliter. The range is 4,200,000 - 5,800,000. Platelets are also harmed by chemo, but like the red count, my platelet count is fine. Finally, the cells that line the gastrointestinal system may be damaged or destroyed, causing side effects known as the 'hurl factor' (hf, for short). However, since zofran and decadron are so great or at least work for me, I only have a twinge of HF. It mocks me a little, saying 'hey tough man, without zofran and decadron, guess what, you'll be thinking you're back at college buddying up to the porcelin after a frat party.' Gladly, I am refraining.

The chemo regimen that I am using is ABVD. The four drugs in ABVD are an abbreviation for doxorubicin (Adriamycin®), bleomycin, vinblastine, and dacarbazine (DTIC-Dome). All four of these drugs are given via my port on days 1 and 15. Now for the fine print. The side effects may include: Doxorubicin - heart damage; Bleomycin - lung disease (pulmonary fibrosis); Vinblastine hair loss, low white cell count and nervous system effects; Dacarbazine - nausea, vomiting (aka HF).

Finally, radiation therapy continues to be the primary treatment for early HD (stage I) and it is used as an adjuvant (helpful) treatment for people with more advanced forms of HD (II-IV). Dr. M still doesn't know if I will get radiation therapy or not. I think it will depend on the original size of the tumor in the chest cavity. Stay tuned.

I hope you've enjoyed this two part series on HD and Chemo. There will be a quiz on Thursday.

Reed Sternberg Cells

2004-10-12T08:27:00.000-07:00

These are the nasty buggers that invaded my lymph system

Class, today is Science Tuesday!

2004-10-12T08:25:00.000-07:00

Today I have a gap week appointment with Dr. M. I had my labs drawn yesterday and we will review those. Plus, if I am very lucky, we will talk about new treatments that he learned about at his Leukemia / Lymphoma seminar he attended last week in Texas. Of course, I am really interested in hearing that ABVD is the treatment option of choice for Hodgkin's Disease (HD) and that it has the best outcome, lowest side effects etc.

I thought I would honor the fact that it is Science Tuesday with some HD information that you can regale your friends with at a cocktail party or colleagues at the water cooler (assuming you are sick of the political season, like me.) Probably, however, these facts will come in most handy if you are stuck on a plane, bus or line with a chatty Cathy. Just whip these out and she'll retreat. I guarantee it.

HD was first recognized, surprisingly, by Dr. Thomas Hodgkin in 1832. It is a lymphoma along with the other, more common non-Hodgkin's lymphoma (nHL). Lymphomas are cancers of the lymphatic system - the body's blood-filtering tissues that help to fight infection and disease. Like other cancers, lymphomas occur when cells divide too much and too fast. Growth control is lost, and the lymphatic cells may overcrowd, invade, and destroy lymphoid tissues and metastasize (spread) to other organs.

HD, unlike nHL, is hallmarked by the presence of Reed-Sternberg cells (named after Dorothy Reed (1874-1964) and Carl von Sternberg or George M. Sternberg (1838-1915)). Reed-Sternberg cells are also present in mono-nucleosis (kissing cousin's disease) and in Epstein-Barr infections which is why my Dr. had to do the extensive workup.

The lymph system includes the lymph nodes and other organs that make up the immune and blood-forming elements of the body.

The lymph nodes are organs about the size of a pea and are found beneath along the route of large blood vessels. They are grouped in areas such as the neck, underarms, groin, abdomen, and hips and are linked by narrow tubes known as lymphatic vessels. These vessels carry the liquids lymph and chyle which in turn transport the lymphocytes (specialized disease-fighting white blood cells) and other blood cells.

Other organs containing lymphatic tissue (and that may be affected by lymphoma) include the:
spleen - the "ductless gland" that makes lymphocytes and other infection-fighting cells, stores healthy blood cells, and filters the blood); thymus gland - the gland that produces immature T-cells that eventually participate in immune responses; bone marrow - that makes stem cells and many blood precurser cells; adenoids - the lymphatic tissue behind the nasal cavity; and
tonsils, the rounded mass of lymphatic tissue at the back of the throat (of course, like Fat Albert, I celebrated my tonsillectomy with ice cream at age four. Neener neener neener, Hodgkin's. You can't get my tonsils. Tough luck.)

After a brief word from our sponsors, I will be back with the exciting conclusion to Science Tuesday when I discuss Chemotherapy.

Bleo blahs and tumor kill make Greg a dull boy

2004-10-08T19:17:00.000-07:00

I went to work Thursday and Friday with long meetings both days. I came home Thursday feeling fairly tired and Friday the same. However, comparing to two weeks ago, I couldn't feel more wonderful. I think the pneumonia is gone, that there has been tumor kill and I and Tammy are able to manage the symptoms well now that we are not neophytes. The one thing that I learned is that Wednesday, with the zofran and decadron, I feel great. I am functional Thursday but starting to feel tired. Friday seemed to be the low point and I got to feeling kinda blue.

I was able to get a flu shot yesterday. It was very wierd thinking that I am in the 'high risk category.' Remember my comment last week about positive gomer signs? This confirms my suspician.

My primary care doc wrote a prescription for me and Tammy found a flu shot available at Ralph's near our house. The pharmacist and her assistant were very nice. That has been the norm, the rule rather than the exception. I have been amazed at how helpful the medical professionals that I have worked with. A phlebotomist where I went to get my drawn (yes it is a Quest facility, where else?) asked about my family, was concerned about me. Nothing but good interactions.

Next week will be gap - 2. Hopefully it will be a repeat of gap - 1. This weekend is kind of busy. Mom is flying home (I don't want to think about that.) We have some scouting activities and the kids are also getting a flu shot. I guess being a child of an at risk patient makes them a high priority case, too.

Basically, I think 'so far, so good' although I upgrade that to 'so far, so wonderful'

Last thing, a tech at work who must not have known about my condition asked (looking at my bald pate) 'if I lost a bet?' Guess I did. I think I won another, though.

Wednesday Morning Coming Down

2004-10-06T07:07:00.000-07:00

with apologies to J. Cash and K. Kristofferson

Well, I woke up Wednesday morning with no way to hold my head that didn't hurt;
The smoothie I had for breakfast wasn't bad, so I had one more for desert;
Then I fumbled in my closet through my clothes and found my Adidas t-shirt;
Then I washed my face and shaved my head and stumbled down the stairs to meet the day;

I'd chemo'd my body the day before with ABVD and other drugs that my Doctor was thinkin';
So I took my zofran and watched my small kids playing with a horse apple they were kickin';
Then I walked across the house and caught the Wednesday smell of mom frying bacon;

And Lord, it took me back to something that I'd lost somewhere, somehow along the way;
On a Sunday morning couchbed, I'm wishing, Lord, that I was'nt hurling;
'Cause there's something in a Wednesday that makes a body feel alone;

And there's nothing short a' crying that's half as lonesome as the sound;
of the Simi Valley family and Wednesday morning coming down.

Drinking Binge

2004-10-05T15:47:00.000-07:00

I am now a pro. I am not a newby any more.

Sunday, like getting ready for battle, I started preparing myself mentally for my second round of chemo that I had today. I had blood work done at Quest yesterday - results were really good. The hematocrit (red cell volume) was in the normal range! My uric acid was fine meaning that I am clearing all the nasty stuff that the tumor is belching as they die. DIE CANCER CELLS! DIE!. My hemoglobin is also up. So much so, the nurse didn't give me a shot of epogen (how I longed for the shot).

Anyway, I got my blood work done, I started taking metamucil (to ensure regularity) and started flushing my kidneys with water. I am on a water drinking binge. I can't move far from a restroom, so I know that I am clearing the urates well.

Here is a mental image for you. I am sitting in my comfy chair typing this blog, drinking my metamucil and my green tea. I have transformed into a GOMER! A gomer for all you non-medical types is a patient who packs his suitcase prior to coming into the hospital. In it are all his personal items that he'll need for his nurse to take care of him, usually involving slippers, shaving kit and other items outside the normal nursing regimen. Tammy used to come home and detail when a patient has 'positive suitcase signs'. Crap, I have them.

Anyway, I am not a novice anymore and I know what to expect. I got ready for them mentally. I went into the chemo lounge and got ready for business. I zoned out to my favorite music (R.E.M., Johnny Cash, Yo Yo Ma and U2) oblivious to everything going on around me. It all went well. Zofran / Decedron followed by my favorite raspberry cocktail - adriamycin (my nurse was hilarious, she referred to it as a my beverage of choice.) - then bleomycin and vinblastine. The main course - DTIC went in quick, too. I was in and out in under 4 hours. We went to the book store, had a latte and shopped around a little. I popped a zofran around 2 and have no nausea and am starving for dinner.

Mom is still here and she and Tammy are conspiring to keep my weight up. Remember from an earlier post where I explained that sudden, unexplained weight loss is a bad prognostic indicator. I think Tammy and Mom are making sure that that doesn't happen. If you want to be on the weight gain diet, ask Mom over for a while. Oh my God, between Tammy and Mom the cooking has been so good. We have had pork chops, steak, portabella mushroom sandwiches, German night. So instead of losing of losing weight . . .

There was a new couple in the office today. She was having her chemo for the first time and she was very nervous. I know that I was like that last time. Not now. (By the way, I passed on my name and number to the RN to give to the young man who was in there two weeks ago in case he wants an instant support group) My next two days will likely be the same as last time. I'll probably feel fine tomorrow as the decedron is wearing off, then a crash on Thursday as the little tumor cells kick the bucket. Week after next, I will have the wbc nadir (low point) and I'll have to be careful with infection. There is an upside to this - I am out of the muck-out rotation. I guess that I can tell that I am getting better when I am back to horse poop duty.

Annointing of the Sick

2004-10-02T18:50:00.000-07:00

My parish had the sacrament of the annointing of the sick tonight. For some reason, I was a little apprehensive during the day about it. I worried about 'being on display' and having the priest pray over me in front of the rest of the parish. When I got to the church, my true emotion came out. I really didn't want to be there because it meant that I am sick. I had a few tears (OK, I cried). Tammy asked what's wrong and I told her. She (in her wisdom) told me 'that I have to turn this over to God. '

I am like 'Stands with Clenched Fists' - the woman who was adopted by the Lakota Sioux in Dances with Wolves. Like her, I am self-sufficient, I am independent, and before this I was strong physically. But, like most Christians I have prayed to God for help and guidance for issues that face you. You get into a mess and God to help. However, despite the church's instructions to turn your problem over to God, I know that I never understood this concept before. If you are a little like me, you pray about a problem then go on your way.

Now is different. This disease requires a whole new level of commitment. I have never been so humbled than now realizing how fragile life is (mine included, now). I am also truly humbled how wonderful our friends and family are. You know this intuitively, but you are never required to call on an entire community of friends like now. Usually you trade favors. I'll help move a piano, a friend will help paint a fence. Now, it seems that the whole city of Moorpark has turned out to help. It is unbelievable and one example of turning this over to God.

Now, back to what made it tough for me tonight. I lacked the humility required to ask God to heal me. It is a really huge step up from guidance over a decision. Being there meant that I had to do this.

I was easily younger than the rest of the annointees by twenty to forty years. Self concience continued to mount as we kneeled to accept the sacrament. Everyone was staring at me (so I thought.) Thankfully, as we prayed for healing, it really dawned on me what we were there for. Turning this over to God takes the burden away from me. I just need to pray, to continue to be strong, keep my sense of humor (to keep my chemo appointments). I'm going to let him take care of the details.

Gap Week

2004-10-01T17:13:00.000-07:00

This gap week (week between chemo treatments) has been better than I thought it would be. My energy level is pretty high. I think that the tumors have shrunk and my pneumonia has cleared up and the epogen (red cell growth factor) has worked. All of these contributed to a great week.

Dr. M. explained that the tumor shrinkage due to chemo treatment follows the same logarithmic curve that they would if they were growing. Left alone tumors have a doubling time specific to the tumor. One interesting thing that I just found out about cancer (I know that it seems like I have a morbid fascination with cancer. I am only applying Sun Tsu' s admonition that to be able to beat an enemy, you must know him.) is that, unlike normal cells that only proliferate during their embryionic stage and stay quiet for the rest of their lives, tumor cells enter into an unregulated reproduction stage and mitosis (cell division) occurs continuously. For tumors to grow, the cell has to be in a growth cycle and only a certain percent of the total number of tumor cells are actively growing (dividing). Let's say it the doubling time is 2 months and suppose that there were 100,000 cells on July 1. This means that there would be about 200,000 cells on September 1 and 400,000 cells on November 1. Another issue that separates cancer cells from normal cells is that cancer cells loss of the cell's ability to undergo "apoptosis." Apoptosis is basically cell suicide. So, not only has the cancer cells' gone reproductively crazy, it never dies.

Likewise, for chemo to work, the cells have to be in their doubling mode and only a certain percentage of the cancer cells are actively doubling. So, the cells would be killed in the same cycle time and they will decrease exponentially, too. Let's say that there are 1,000,000 on the first week of treatment and the chemo kills 90% because that is how many of the cells are in play the tumor will shrink to 100,000 cells. Then, the next treatment 2 weeks later kills 90% and the tumor shrinks to 10,000 cells. Then on the next treatment 2 weeks later (or 4 weeks after the start) the tumor is down to 1,000 cells. If you put this on a chart paper the tumor cell count will go down following a specific type of curve called 'logarithmic decay'.

Taking all this mathematical mumbo jumbo basically means that the largest tumor depletion should occur early in the treatment. This is why I think that I feel great. Having said that, I also think that the next gap week may not be quite as good because my counts (white blood cell and red blood cell) may be lower due to the continued treatment. You might have to feel worse before you feel better.

I was telling one of my friends yesterday that I believe that I will continue to feel better all the time (that was a Beatles' song, wasn't it?); but that I am preparing mentally to feel worse just in case my counts go down, that tumor kill or lysis increases or whatever. I think and believe that I will continue to get better but I have to be realistic and know that there may be bad days and good days.

Another interesting thing that I learned was that this tumor kill liberates lots of bad stuff that you have to get rid of. For example, people with gout have problems with metabolism of some body chemicals (proteins / DNA) and they build up uric acid. Imagine a flood gate opening of uric acid from these tumors. It clogs up the blood and you have to get rid of it. There are two ways to do so. One is to take allopurinal or a medicine to beat the uric acid. Another way (if you have good kidneys) is to drink lots and lots of water. I've probably been drinking 120 - 150 oz of water each day. The downside is that you can't be further than 30 feet from a restroom at any given time.

I am so thankful that this week has gone well. It hasn't been so without the continued loving support of my wife, my mom, my boss, my friends at work who are shouldering more of the load, my friends at home, the prayers and support of all of you. One of my wife's friends has setup weekly meals through November after my mom leaves. What Tammy and Mom have allowed me to do is work when I need to and come home to rest keeping my energy up. They have been amazing. When Mom leaves and the food caravan begins, Tammy will be able to keep me resting too. They say it takes a community to raise a child. I say it takes a community to support a cancer patient. I am so grateful and humbled and profoundly thankful.

2004-09-29T08:40:00.000-07:00

No more bad hair days...

God works in mysterious ways

2004-09-28T18:38:00.000-07:00

I admit it. I am impatient and I want things when I want them. I think that is part of my type A personality. I (feeling like Dennis Cleary) get really agitated when I someone is late for a meeting or if an appointment that I have with a Dr. is more than 15-30 minutes late. One of my goals with my treatment is to work on my impatience quotient. Tammy reminded me that I chose Dr. M because he spends real, quality time with his patients. Another thing that I usually don't like is talking to other patients in a Dr's office, other patrons in a restaurant or other passengers on a plane. I don't know why. I usually like to hibernate with my work, reading or just my thoughts.

Well today, all that changed.

I was sitting there reading my book waiting for my appointment. An elderly couple came in. I nodded to them or gestured with some other type of non-committal greeting and went back to my book. Something today, however, prompted me to say hello and chat with them. The woman asked me about my cancer and how I found it. I told her about my quick diagnosis and start of treatment. She, then, told me a most amazing and wonderful story. She and her husband are, for each, their third spouse. However, they were junior high sweethearts 50 years ago. He took her to his 7th grade dance (As she said this, I remembered that Evan is going to his first 7th grade dance tomorrow.) They ultimately lost contact, married other people, had children. They found each other after other rewarding lives and then married about 20 years ago. Ten years later, shortly before their vacation with her parents, her Dr's office called her to remind her that she needed her annual mamogram. She had it and her Dr. called later that night and said I need you to see a surgeon about a biopsy (sound familiar?). He said, you need it tomorrow.

She replied, "Forget it. I am going on vacation." (How could you compartmentalize something like that for 3 weeks?) She got back and had a biopsy where the surgeon cut out the lump. It turned out to be breast cancer. She had another surgery (complete lumpectomy and removed lymph nodes on that side), chemotherapy and radiation. She was then 'cured' for 7 years. It came back and they blasted it back into remission. In the meantime, she fell and totally crushed her ankle forcing her to stay in a wheel chair. Her cancer recurred this year. She was in a radiologist's office getting the news about the recurrance when the Dr. said 'your husband really should be here...' She replied 'he can't, he is at his urologist getting his own cancer diagnosis' (prostate cancer). I am sitting there dumbstruck. Here is a wheelchair bound woman with recurrent cancer facing more chemo and her husband has to help her in and out of the car, to treatment and begin his own treatment. Even as I write this, I am amazed.

Their joke was that they are a cancer couple now. The thing that struck me was how positive their attitudes are. She didn't say, but being married to Tammy - an oncology nurse, I knew that the treatment for breast cancer is hideous. I also know that his initial treatment has been very unpleasant. Both make my Hodgkin's treatment look like a trip to the beach. And yet they are still positive, gushing over their junior high dance like it was yesterday. I watched their eyes as they described their cab ride to the dance (they didn't want their parents along) some 50 years ago. You could almost see it cinematically playing over again in their minds like it were yesterday.

I have really tried to be positive and upbeat during my last 4 weeks. I think that I have largely been so. However, I learned a real lesson today in loving the day, taking the good with the bad and realizing just how lucky I am with my diagnosis and staging. God needed to remind me. Thank you God!

As they were telling me their story, another, very young man walked into the office just before I went into my exam. He looked like a pharmaceutical detail man on a sales call, except that he was filling out a new patient questionaire like the one I completed three weeks ago. We were talking about work and travel (both of us liking both alot). Before we could talk about other things (e.g. cancer, why we were here), my exam room became available.

I waited for a while in the exam room (remember my first problem of the day). Then, the nurse had a problem drawing blood from my port. She had to stick me to get blood for my lab work. The lab work turned out to be great, the Dr. couldn't believe how I looked (color returned, no coughing and great lung sounds). He was very pleased with the progress. My hemoglobin came up nearly a g/dL (astonishing) and my white count dropped in half (good response). He said that I am doing terrific. A little bad news, though. He wants to treat the fibrin clot that my port must have since the RN couldn't draw blood back. The small fibrin clot is likely on the end of the port that sticks into the superior vena cava. I have to go to Los Robles hospital for a little portacath roto rootering. It is a very simple procedure where they inject some urokinase (an enzyme) into the catheter that chews up the fibrin clot. Great. Two hours in the hospital tomorrow and a thousand dollars billed to my insurance. All told, however, a very good visit. I left the exam room some 3 hours after my appointment was scheduled to start and not really minding the delay. (In fact, it turned out to be a real gift.)

As I left, I talked with the young guy sitting in the lobby waiting for his visit. He asked me what my disease was. I told him Hodgkin's. He asked how I found it and I gave him a bullet summary (elevator speech) of the previous 4 weeks. (Remember it started out with unexplained anemia found on a wellness exam). He told me that he, too, is anemic despite being athletic. He doesn't know why and Dr. M is working him up. He thought it was pretty benign (and I hope to God it is) but I just have to wonder.

As for me, I am thankful that I can identify what I have, treat it and beat it. Plus along the way, pick up wonderful little life lessons like I did today.

Song of the day

2004-09-23T15:49:00.000-07:00

The song of the day - "Take a little zofran, put it in your pocket, save you from a nauseous day" (sung to the the tune of 'catch a falling star, put it in your pocket'.) Went to work today for 4 hours and had no ill effects. I worked before hand and will work a little later.

A little worry developed. Trenton developed atypical chicken pox. I've had it, but there is worry of relapse and whether it could become shingles were I to get it. Dr. Ma is talking to an infectious disease doc to see if there is any danger for me. I'll let you know.

Zofran, by the way is made by GlaxoSmithKline (my old company) which explains why I got it for $30 at the pharmacy rather than $20 / tablet.

Goin' to the doctor and I'm gonna get che e emo

2004-09-21T19:04:00.000-07:00

I had two songs going through my head this morning. The first was in the title and was set to the music of "going to the chapel and I'm going to get married". I was pretty excited for this day to come. A journey of a thousand miles begins with one step. I was ready for my one step.

Before we left, I started singing 'going to fly now' the theme from Rocky. You know 'don tada don tada don don don' where he is racing up the steps to the Philly art museum. OK I was staggering up the stairs to the bathroom. Same image.

We took the children to school then headed for the Dr. After the obligatory 25 minute wait in the waiting room, the nurse took me back, accessed my port and drew blood. The hct was down (29) but the hgb was up 9.8 and the wbc's were good (9.0).

For all of you who haven't had chemo (and believe me, I pray that that is the majority of you), here is what it is like.

She started me with an appetizer of zofran (anti-emetic) and decedron (a steroid). All day Tammy asked me why I was staring. I think it was a side-effect of the decedron. After the zofran and decedron was in, she started with the mean and nasties. The first m&n (no, not m&m) was a test dose of adriamycin. This is the drug that makes you lose your hair. It didn't fall out today, but I'll shave it this weekend as my last act of defiance. She injected a small amount under my arm to ensure that I didn't have an allergic reaction to it. I didn't. Then she got out this syringe that looked like (I swear to God) one of those in a comic book. She needed two hands to carry it. It contained adriamycin. It sort of looked like cherry koolaid. Next came two smaller pushes of velban and bleomycin. Bleo can, apparently, give you the bleo blahs. Hasn't happened yet. Finally, the main course was DTIC. Some initials that lay people aren't supposed to know. The main course lasted 2 1/2 hours. During the velban drip, the nurse gave me an epo shot. Epo, or synthetic erythropoetin, makes your red cell count go up. My anemia will improve and I'll feel better. Takes 4-6 weeks. I swear I feel better already.

After all the meds were in, I was able to leave. It all felt very anticlimatic. I have oral zofran (anti-emetic) and codeine based cough syrup. All in all, I feel terrific now.

I go back in a week to have lab work done (see what my white count is.) If they are low, then I get neupogen. This is another biopharm product that helps your white count go up. The main idea is not to skip a dose or have it delayed.

Thanks all for your love and support. I could really feel the prayers at work. God Bless and talk to you soon.

Stage IIa !!!!!!!!!

2004-09-16T15:30:00.000-07:00

I didn't start chemo today (9/16/04) because a second x-ray today showed some infiltrates in my lung. He does intend to start on Tuesday at 9:00 AM. He wanted the Levoquin to have more time to work. I think it is smart. If I get worse with night sweats or coughing then we'll start earlier.

I do have excellent news though. We looked at the PET scan and there is no lymph nodes below the abdomen. The organs are clear. Dr. Ma staged me a IIa! This is such great news. I am early stage Hodgkins with excellent prognosis. I am overjoyed.

I will be at work tomorrow and Monday then off Tuesday to get started with chemo. Tammy and I and countless others (Thank you) have praying hard for some good news. This would constitute unbelievable news. More on Tuesday.

To Chemo or Not to Chemo

2004-09-16T08:02:00.000-07:00

I forget how the next lines in Hamlet goes. I will check in with the Dr. Ma today to see if I start chemo. The deciding factor is if I am getting better from the Levoquin for my lung infiltrate. It is a little annoying for me - a classic type A personality to take it day by day. I'll let you know. I go in to see Dr. Ma at 11:15 and we'll decide. My hunch is not today.

Oh yeah, here is the rest of the Hamlet speech - Whether 'tis nobler in the mind to suffer the slings and arrows of outrageous fortune. I guess I have outrageous fortune. I intend to use the slings and arrows rather than duck them.

It's so ironic. My son Evan is listening to the song 'Time of your life' "Something unpredictable, In the end is right, I hope you have the time of your life" I really got teary eye'd. I thought about this on two levels. (Rather the thoughts crash in like they sometimes do.) In one thought I applied this to my situation with the idea of making the best of this and making me a better person. Then the other (pessimistic) thought crashed in - this was the song used in Evan's 6th grade graduation. I wondered whether I would see his high school graduation. I alternately deal with and later hate this thing.

More later.

September 14th - Diagnostic Day from H_ _ _

2004-09-15T13:57:00.000-07:00

Today I am having a Bone Marrow aspiration, followed by a PET scan then Pulmonary function tests.

The bone marrow was nearly excrutiating. Maybe I am a wimp, but the insertion of the syringe to get the marrow felt like he was putting in a oil derrick pipe. Then he dug around a little and found that nerve I was trying to save. Lastly he took some actual bone and marrow structure out. My butt still hurts a day later.

We (Tammy and I) then had to bust butt (as if I hadn't done so already) to get to my next appointment - PET scan. They starved me for 7 hours then injected radioactive glucose and had me lie still for another hour (remember I am very hungry). She told me to relax and sleep if possible. I was in a little cart area off a busy hall and some woman with clicky shoes kept walking by every 2 minutes and a Dr. was dictating very loudly so sleep was hard. Probably all the glucose went to my brain. The scan itself took another 50 minutes. When we got to the car, we had to bust butt for the third time to get back to TO for my pulmonary function test.

The pulmonary function test would have been a fun test last year when I was in great shape. When I am coughing every other breadth and the pulmonary tech is telling me to keep pushing air out of my collapsing lung, the test wasn't so enjoyable.

Hopefully I'll have some results from all this stuff tomorrw.

September 13th - Norris Center and Echo

2004-09-15T13:48:00.000-07:00

I met with Dr. K - the Hodgkin's expert at the Norris Cancer Center at USC. He confirmed the treatment plan for early stage (through stage III) Hodgkin's. He didn't know whether I would be a candidate for radiation therapy or not. He said that if the mediastinum mass width (the width of the lungs pushed out by the tumor) relative to the total lung width was less than 0.35 then I wouldn't get radiation. Mine was less than that. He found infiltrates on my lung that is either pneumonia or resolving pneumonia. He prescribed Levoquin for it. He also thought it might be a good idea to wait to start chemo until the antibiotics had a chance to work.

He did find two spots on my spleen that the radiographer may have missed but wasn't sure if they were Hodgkin's or not. He also remeasured my albumin (3.1, low). I have two (maybe three) negative prognostic indicators. 1. I am male. Tough luck. 2. I have a low albumin. The third would be the stage. If it is 4, that is not good. 2-3 is better.

Then Tammy and I had to rush back north so I could have an echo - basically an ultrasound of the heart to see if it is ejecting blood properly. They found fluid in the pericardium (sack surrounding the heart.) It was putting pressure on the heart. The fluid is likely due to the lymph nodes not draining the heart properly. They didn't prescribe anything for me although the heart Dr. called Dr. Ma. and let him know.

September 10th - 2nd CT scan

2004-09-15T13:24:00.000-07:00

I had my abdominal and pelvic CT scan today. The CT scan is a series of x-rays where they can look at the whole body in slices. They wanted with and without contrast. This was another lovely test where I was able to be NPO (fast) for 6 hours, then drink 3 particularly enjoyable bottles of contrast. The scan was quick.

At around 7:00 PM Dr. Ma. called and we talked a little more about the ABVD treatment and what Dr. K at USC would think

September 9th - Portacath and meeting Dr. Ma.

2004-09-15T13:10:00.000-07:00

Today I had my portacath placed. This is a central line that has a port just under the skin below my left shoulder on the left side of my chest. The line goes directly into the superior vena cava - main vein going back to the heart. Chemo will be administered there rather than starting an IV on me each time and ruining my lovely veins.

I met with Dr. Ma. (my Oncologist) today. He trained at Norris Cancer Center. First, he talked to Tammy and me about how the diagnosis looked, what the staging would involve. Next he examined me from head to toe and felt the lump by my right collarbone (said it was very subtle), found another under my left arm (very small.) The liver and spleen didn't feel enlarged. He didn't find any abnormal nodes below the diaphragm (good news.) He ordered more tests - abdomen and pelvis CT (further staging), bone marrow aspiration and biopsy (don't ever get one of these unless you have to. It is a real pain in the a__ (which is where they stick a needle the size of an oil derrick in.), a PET scan (you fast all day and when you just about expire from hypoglycemia they pump in radioactive glucose that heads straight for metabolically active sites (e.g. the brain (less so in my case), cancer cells and sites of tissue repair.), a pulmonary function test and a cardiac echo since the CT revealed a pulmonary and cardiac effusion.

He recommended that I start on ABVD which is standard for early stage Hodgkin's and evaluate whether I would get radiation therapy. He knew that I was going to see Dr. K a renowned oncologist at Norris and wanted his second opinion to double check his work. I like quality control. Don't you?

He said it would be a 4 week cycle with chem on day 1 and day 14, day 1 and 14. and that I would likely need 4-6 of these for a cure.

This Dr. is a very nice man who wanted Tammy and I to be in consultation with him regarding the treatment that we have choices! His office staff are great too. The nurse and front desk person have really facilitated me getting in, getting into other appointments (even when it is last minute or I am late.)

September 15 - No Chemo Today

2004-09-15T13:06:00.000-07:00

We thought that today may be the first day I start chemo. Something I both dread and and am looking forward to. One of my friends compared chemo with poison. I told him that I thought differently. Chemo is a life giving drug developed by geniuses adminstered by geniuses. Without it I die, with it I live. He thought that I have the correct attitude.

I called Dr. Ma today to see if I start or not. He wants the pulmonary problem to clear up a little. I have to see him tomorrow (9/16) and we'll decide then if I go ahead. He wants my immune system and the antibiotic to work together as long as possible to beat the lung thing.

Anemia, Hodgkin's, pneumonia, cardiac effusion. This sucks. Sorry for my foul language but it really does.

I cried alot yesterday. I haven't so much today. I am reading a book about using prayer to become a better person. there is a chapter on helping healing. I think I will skip to that chapter next.

I am having a little trouble sleeping due to the mass around my bronchus (this mediastinum mass) and the pneumonia and cardiac effusion (caused by the way from the lack of the lymph nodes to drain away the pericardium). Last night was better. I am still coughing but I feel better.

Each morning I am getting up a little before five to meditate and pray. My prayer is that I am cured of this disease and become a better man through it. I visualized angels (maybe it is the coming chemo) squeezing on the tumors and making them go away. I feel as though I've changed a little already. Today I was able to thank God his help in me dealing with this.

Today, the results from the PET and the PFT should be in. I'll call Dr. Ma for the results soon.

September 8 - Diagnosis

2004-09-15T11:55:00.000-07:00

I just got a call from Dr. M (my surgeon). The diagnosis is Hodgkin's with Mixed Cellularity. A renowned pathologist at USC made the final diagnosis. Now we need to get on with staging and other things. (more later.)

Friends and Family

2004-09-15T11:38:00.000-07:00

We have had phone calls from so many people expressing their concern for us. We are on the prayer list at several churches. The Small Church Community at Holy Cross in Moorpark has added me to their prayer list. My friend at work, Karen, added me to her prayer list at the Church she attends. I am being prayed for in Korean by Hye Cha. My mom has said that her brothers and many of her relatives are very concerned and are praying for me.

My sisters and Dad are so concerned and I try to keep them posted either through a phone call or through my mom (more on that later). I feel bad for them because they can't really see how I am doing or that my spirits are up. Everyone has called very tentatively I think because they don't want to intrude. I can assure you that there is no intrusion.

My sisters - Teresa, Michelle and Kristin went in with my mom to buy me a full Adidas workout outfit that will serve two purposes. It is going to be my battle dress while I am fighting this. Each day of chemo I intend to wear it. At first, I thought of burning it after I am cured as a cartharsis. But I decided that I will wear it proudly to be the in the survivor's parade at "Relay for Life" and other cancer fund raising events.

I love and appreciate all of you for the love and outpouring of support. It has been truly heartwarming and so wonderful.

My brother in law John donated frequent flier miles to fly my mom down. Bless them both. My mom just started in Seattle with a new Real Estate firm and marched into her broker's office and said that she would need to be with me for at least the next month. The broker said not a problem. John booked her on a flight the very next day. This would be about the 8th blessing that I've had during this (so far.)

My mom - what a blessing she has been. She came in and took over. She had to learn the school route the first night she got here and had to deal with the children's needs (particularly Olivia's who will hang on you all day long.) She went from a very quiet Kristin's house to a tornado at the Clark family. She has totally waited on me from the time I get up to the time I go to bed. She keeps telling me my job is to get better. I sure appreciate all that she has done for us. Doing all these (day-long) appointments would be impossible without her. Love you Mom!

One of my favorite phone calls was from my Uncle Terry. He is a Horseman / Boiler maker (at Hanford) and was / is about one of the strongest people I know. I did weight lifting for many years emulating him. Anyway, he told me that he has 30 Cowboy's for God praying for me. I am really into visualization these days and loved that image.

We got cards and letters from many friends and relatives. Many lovingly asked if they could bring dinners over, watch the kids, whatever we need. Tammy asked her best friend Lisa if she could let everyone know that mom is here and after she leaves and when treatment is going on, maybe then.

Speaking of Lisa. She and Tammy have been through alot. They are penultimate best friends and Lisa has conducted herself in absolutely that manner. She has driven many time the 20 mile round trip to help with the kids, arranged for other care, and mostly been there for my wife who needs as much emotional support as I do. THANK YOU, LISA!

One of my friends (who works for Amgen) if I need epo or neupo (kidding of course.) Thanks, S!

Lastly, my boss has been completely supportive. He said just this morning in an email "
I am glad that you are taking the time to focus on your health and necessary treatment. Your health and family should be your main focus and then work. Don't worry I will make sure that there is plenty of work left for you at the end of the day. I hesitated calling you but want you to know that your in my thoughts. Sounds as if you are connecting with the best experts to get this tackled! "

I truly love and thank you all...

Love and Support

2004-09-15T11:28:00.000-07:00

Before I go on, I need to tell you all about the love and support that I have received. It is truly overpowering

Tammy has been beyond wonderful. Despite the fact that, during the first two hellish weeks of this, I was moping and down and depressed and angry and ... she always treated me with the most intense love and kindness that I think I've ever known. I have been married to her for 19 years and we have had many times of great love and affection and times of great joy and sadness together. I think that the lense of a life threatening disease clarified for me how wonderful she is and allowed me to appreciate what she was doing for me. I imagine that I looked pretty cruddy (and will likely look cruddier, later) . I also imagine that because of my fluctuating emotions I wasn't too nice to be around. She never once let me feel less than intense love and compassion. I have my cake and can eat it too. she is also (in case you didn't know) a trained oncology nurse who knew all the right questions for the Dr's when my head shut down.

I also know it has been hard for her. I know that she has cried about this which breaks my heart even more. I know that she has had to be strong in appearance for the children in the face of potentially losing her life-partner, her children's dad. I can't imagine the pain. It makes me cry right now thinking about it.

Read the next post for other outpourings of love and support...

September 2nd - Surgery

2004-09-15T11:16:00.000-07:00

The surgery started at 7:30. My surgeon elected to take out the lump under my left arm. Because I was a novice, I was concerned that it would be non-diagnostic. I am glad that I listened to him because the scar that he left was very big.

I woke up quickly at around 9:00 and was out of the hospital by around 11:30.

The frozen section revealed Hodgkin's disease (90% probable because they found Reed Sternberg cells.) It wouldn't be until about Tuesday that a final diagnosis would come in (Monday was Labor Day holiday.)

Dr. D. (my PCP) called me that evening to ask me how I was doing. I said OK but I am very anxious to find out how the next part would work. I guess that I am a little type A. He referred me to Dr. Ma., an oncologist in TO.

Dr. D also knew the COO of the prestigious Norris Cancer Center at USC. I asked Dr. D how to deal with two Dr.'s at once. I was concerned about offending one or the other. It turns out that Dr. Ma trained at Norris and talks to them all the time. There would not be a problem he assured me.

August 31 - The results of the CT Scan

2004-09-15T11:02:00.000-07:00

7:15 PM, August 31st. I thought I was home free (still had some doubts) about the CT scan. My Dr. hadn't called yet and he said that he would if there was any problem. Well the phone rang at 7:20 or so just before Tammy and Evan were off to a back to school night event (Evan just entered middle school). He said to me that there were quite a few nodes that lit up on in the chest. I remember barely walking up the stairs to hand the phone to Tammy. I think my head shut down and I needed her to hear it. He said it might be lymphoma but couldn't tell what kind.

By the way, I think one of the miracles that occured during this was my PCP's office getting me in the same afternoon for the CT.

My PCP indicated that a biopsy is next and referred me to a surgeon Dr. M.

9:00 AM, Sept 1. According to the office staff a biopsy was unlikely this week because Dr. M had a vacation and his own surgery scheduled for Thu and Fri (Sep 2 and Sep 3). I got very lucky and got an appointment with him in his office the same day. He examined me and found an accessible node under my left arm. He is an exceptionally nice man who said it like it is - this is likely lymphoma. Let's operate, get a path report and get started with treatment. The next miracle was that his nurse was able to get me in the next day at a near by hospital and that Dr. M would do the surgery even though he was supposed to be on vacation.