An Interesting Adventure

Communicating...

As soon as reality began to set in, the questions began to come...

• Who do we need to tell
• How do we tell them
• What do we tell them
• Do we even try to control the information or just let it hit the "coconut telegraph"

Then there's the list...

• Family
• Friends
• Neighbors
• Colleagues at work
• Acquaintances

Now take the two lists and build them into a priority matrix...Nasa Ames has some available computer time to help you with this.

Now the approach...

There's the laid back approach where you stop by or call and chat about the weather, this week's sermon, or how's the family? and when the right momment comes you can slip in "By the way, I have cancer; please pass the salt."

There's the direct aproach, "I have cancer; any questions?"

Or the one I actually used with my barber, "Jack, thanks for the haircut; you do really great work. I won't be seeing you for a while, but it's not your fault."

Family first...their priority is easy. But the hardest audiences are the kids and my mother. Those are really not conversations I look forward to, but ducking them is really not an option.

We already talked a bit about telling our older two children, but our younger one is away at school and I just do not want to tell her all of this over the phone. I want her to see me, and see that I'm no different than the last time we were together. To further complicate things her birthday is coming up and since she's already has memories of a previous September 11th, we are not going to pile onto that one.

Carol and I decided to fly out and tell her at school, but that got preempted by the shoulder situation. So now what?

Also, I have already told my brother, but I still need to tell my mom. This is going to be especially difficult since my father died of cancer-related causes a little over three years ago. I love my mother very much and I just do not want to upset her. I'm expecting this will hit some pretty raw nerves and no one needs that.

All of these issues well up and become a growing mountain of things that have to be dealt with. There is no easy way. I'm sure that everyone finds his own approach, but I'm still formulating mine. It's a lot to think through.

Breaking up is hard to do...

Carol and I decided almost immediately after the initial office visit to our first specialist that we had to have an oncologist with whom we were comfortable in terms of his/her knowledge of the cancer we're facing, as well as, as a person with whom we could easily work -- and communicate -- throughout this ordeal.

As with most situations like this, we knew no such specialist going in, and so depended upon a referral from our family doctor's practice. After our initial meeting with this person, it was very clear that he was good and knew his stuff. But, after our first meeting at his office, we quickly realized that he did not match the profile of the doctor we need and want as a partner to work with us through this process. This is absolutely no reflection on him, but rather his office and our experience there.

It's a little hard to explain, but in our gut we just knew this was not going to be a fit. The clincher was the fact that our son, Andrew, joined us at the first office visit (because we want him as involved as he chooses to be in this process), and, after the appointment he commented how chaotic the office was and how uncomfortable he was in that place. That sealed the deal for us.

Conventional wisdom is that you take what you get from a medical establishment, but we decided that the stakes are just too high here and that we were going to find someone with whom we were supremely comfortable.

The first step in finding a new oncologist was working our personal network. Unfortunately, cancer is so pervasive that almost everyone knows someone who has  dealt with this crappy disease. So we started making phone calls and sending emails. Our network worked their networks and in less than 24 hours we had references and recommendations. In this process one name popped up from four different sources; that kind of directive was a real blessing.

On Wednesday afternoon we received a call at home from Andy, a doctor whom one of our friends had contacted on our behalf. His call was simply a gift from God. Andy spoke with Carol a while and then with me. After about fifteen minutes, he called another doctor and conferenced us all in together. The other doc, P.G., was amazing on the phone, very concerned and incredibly helpful. We made arrangements to see him as soon as possible and went from the emotional low of our previous experience of the day to a grateful high, knowing we had found our "match."

Now for the transition. Our situation was complicated by the fact that the original oncologist had ordered some tests that we still wanted to have, but we also needed to cancel three other appointments that his office had scheduled.

We started by calling his office and asking for the Scheduling Department.

Scheduling lady: "This is scheduling"

me: "Hi, this is Marsh Williams: who am I speaking with?"

Scheduling lady: "This is scheduling."

me: "I understand, but could I please have your name?"

Scheduling lady: "Umm, this is Rachel (we are not using her real name)"

me: "Rachel I need to change some appointments."

Scheduling lady: "What do you need to change?"

me: "We need to cancel the bone marrow biopsy, Tuesday's Rituxon, and our next Dr.'s appointment, but we want to keep the appointments for the Infusaport, echo cardiogram and the Pet Scan."

Scheduling lady: "So you're not coming back here but you want us to still book appointments for you?" She snickered at this point, and that was a really bad idea on her part. The snicker was great because, with that, I gave myself permission to just not care about their reaction to this new development, so... 

me: "As a matter of fact you have that exactly right."

We got through that part and things began moving forward.

Now I am working on a letter to the original oncologist explaining our decision to move. He may or may not read it, but I hope to outline for him our concerns, and specific factors that led to our decision. Carol and I talked this over and, since I have not had been through a breakup in the last twenty-five years, we discussed the best way "break up."

We considered the "It's not you it's me" option and the "I just need someone who will listen" combined with the "I just need more in a relationship." We shared a great laugh about the situation in which we find ourselves, and thankfully realized how important laughter has been in this adventure.

We will write the letter...

The real lesson learned here is that, while we are not medical professionals, we know what we want out of this process, and we know the attributes we are looking for in the oncologist who works with us. We've decided not to settle for less and we are moving forward on this.

 

Progress...

Friday, September 14, 2007

Today is a day of tests. We start with an echo cardiogram and move from there to a Pet Scan.

The Pet Scan is to understand where the cancer may have spread. I was injected with a radioactive sugar which the cancer cells absorb ("eat") at a faster pace than other cells. After forty-five minutes I had what amounts to a Cat Scan to see where the cancer cells "light up" from the sugar they have consumed.

Because my port site has not yet healed, we're still wrestling with the game of "find a vein." It's just not easy to get those little suckers to standout for people to see them. At any, rate the nurse at the Pet Scan suggested that we might want to call the doctor with whom we have our next appointment to see if they are going to draw blood. If they were, she would leave the line in so I would not have to get stuck again. We called the doctor and never heard back, but after a brief discussion with Carol, we bolted to the James Cancer Hospital with the line still in and hidden under my sleeve.

As I mentioned earlier, one name kept popping up within our network of friends and we had a meeting scheduled at 4:00  with that oncologist. The Pet Scan took so long that it was about 5:30 by the time we arrived. He had left the office to make rounds; however, he had given instructions to call him when we arrived so he could come back into the office to meet with us...that should have been our first clue that we were about to meet an extraordinary individual.

First, they did take several blood samples and were able to use the line that had been left in: one for the good guys!

When the Dr. arrived he was mild mannered person with a soft voice and a lovely accent who immediately put us at ease. Then he proceeded to spend ninety minutes with us explaining everything he knew, and what he thought, about the situation. He wanted to educate us and said, "The more you know the more you can help us as part of the team." Damn...that's what we'd been wanting to hear.

The word team gets used a lot, but it is a powerful word that is full of meaning for anyone who has really been on a team -- in sports, at work, or anywhere. Being part of a team means that there is enormous trust and respect between the members and everyone knows that their role is both unique and critical for overall success. It means that you can do your job and trust that the person next to you is doing theirs.

Dr. PG explained that, based on two out of the three major tests, he believes I have Burkitts Lymphoma. The final test will confirm or refute this, but based on the results that are currently in, this looks like it.

The good news is that there is a reasonably good cure rate for this type of cancer. The downside is that the treatment is pretty nasty. The chemo is very toxic and has to be administered in the hospital. Right now it looks like seven sessions of chemo with three weeks in the hospital and one week at home for each of the sessions.

We are scheduled for a bone marrow biopsy on Monday and, depending upon the outcome of the genetic study, admission to The James Cancer Hospital on Tuesday.

As we left the office Carol and I were overcome by a sense of relief that we had found the right person to partner with through this ordeal. And we are simply thrilled and thankful to God for this turn of events.  

A Study in Studies...

Monday, September 17, 2007, con't

One of the many benefits of being at The James is the availablilty of a special study being conducted with individuals diagnosed with Burkitt lymphoma/lukemia. The experimental (research) portion of the treatment or procedure is the use of Rituximab in the treatment of Burkitt's. The study is directed by the National Cancer Institute's Cancer and Lukemia Group B (CALGB). About 100 people will take part in it, two or three per year at OSU.

Jodi is the RN coordinating my participation in the study, and she spent a good bit of time explaining things to Carol and me. The good news is that the six treatments after this initial round may only last two weeks each (instead of three), which could shorten the whole process by a month and a half! But, as Jodi made clear, the time involved will be intense. Burkitt's is agressive; tumors can grow like crazy, and it tries to spread rapidly, especially targeting the spinal cord and the brain. That explains why I was admitted so quickly...

For those of you who are into details, the medicines involved include:

• Treatment Module A: (Course I)Allopurinol (a supportive durg, not a therapy drug) Cyclophosphamide Prednisone
• Treatment Module B: (Courses II, IV, VI) Ifosfamide Mensa Methotrexate Leucovorin Vincristine Ara-C Etoposide Dexamethasone Filgrastim (C-CSF) Rituximab And through a lumbar puncture or spinal tap: Methotexate Ara-C Hydrocortisone
• Treatment Module C: (Courses III, V, VII) Cyclophosphamide Mehtotrexate Leucovorin Vincristine Doxorubicin Dexamethasone Filgrastim Rituximab And through a lumbar puncture or spinal tap: Methotexate Ara-C Hydrocortisone

Whew.

By all accounts, Burkitts can respond to treatment as quickly as it grows. Jodi cites a cure rate of 75-80%, and I'll take those odds any day. If, however, we're not successful, we won't really get a second chance, since it's known to come back with a vengence.

Frankly, the study is something I know so little about, that I must place my full faith in the recommendations of the professionals (including Science Advisor Adel, who consulted on our decision). I am grateful for the technical creativity and dedication that went into the development of each and every drug, even if I don't know what they do (or how to pronounce them). But more than any discovery of man, we will continue to rely on the mercy of the Great Physician.

We're just a passenger on this adventure, and we're definitely on our way.

Dr. T and me...

Thursday, September 20, 2007

The day started out with a second biopsy which I went into with no concerns. The previous experience at Riverside had been absolutely painless, during and after the procedure. The doctor had met me the day before and explained the process in great detail as well as his concerns and how we would work to miss any of the bowel or blood vessels in the immediate area. He did a preliminary scan with contrast dye to "map" his approach. He was thoughtful and concerned about my comfort and well being.

Now onto Wednesday's procedure. Dr. "Torquemada" introduced himself and said "Now why are we doing this again?" I went over everything with him and explained as best I could what was going on. I was rolled into the CT for the preliminary scan, and the next thing I knew he was in the room, cleaning off my belly and said "O.K. a sting and a burn" and we began the procedure

Dr. T: "O.K. here we go"

Me: "Ouch"

Dr. T: "You don't feel this do you?"

Me: "Yes I actually do"

Dr. T: "Hum...there shouldn't be nerves in there."

Me: "KELLY CLARKSON!"

Dr. T: "You have to stay still"

The following section may not be appropriate for the squeamish.

Dr: "I'm going through the stomach wall...you have to stay still"

O.K. so here's the picture...I'm lying on the CT Scanner bed with a device roughly the size of a large knitting needle sticking into my abdomen and we're all taking pictures as they pass me into and out of the scanner to check the placement. Oh yeah, there's the part where I'm not allowed to breathe. I'm sure it was just a few seconds but when you're trying to hold your breath the first muscles that move are in your diaphragm and abdomen. "Did you move...", Now I would have to move to answer, so this had to be a trick question. Finally one of the nurses stepped in and said I had not moved. After a few adjustments and poking around. By the way, regardless of what the doctor thinks, there are nerves in there and it is major league painful. Finally he announced that the needle was in place.

Now I go in for one more scan and go out. Dr. T. says "O.K. if there are nerves in there this may hurt a bit. And four clicks like a staple gun. Now the last time I heard this sound, I felt literally nothing. This time it was like a wave of intense pain all moving toward my heart. The fist click I literally though I was having a massive cardiac. When I realized I wasn't going to die from this, [insert somewhat mixed emotions here] we did the next two with the same response from my body.

Finally he said "This is the last one" and we were done. As they rolled me out I mentioned that I just did not understand why this was so different than my previous experience. Dr. T simply snarled and said "Well they didn't get everything the needed last time did they?" O.K. at least it was over. And while I know we are called to be salt and light the only light I can think of is the cattle prod I'd like to place in Dr. T's...

The rest of the day was fairly uncomfortable but we had a great discussion with Dr. P, the oncologist. I just cannot communicate how wonderful this guy is. When he comes in, it is like I am the only patient he has. He focuses completely on me and Carol and wants to make sure we understand what is going on. This guy is a gift. We also got news that all of the other tests were in and results were fine to enter the trial program.

It will take five to seven days to process the tissue that was torn biopsied from my abdomen, so it looks like I'm going home until the next result is in...

One final note, I did convert to Catholicism at the hands of Dr. T during the biopsy...

I've been wrestling with this one...

The other day I mentioned that I was wrestling with the concept that this may be a gift. I think I've put my arms around my thoughts a little more and what to share them.

God's hand is all over this...

The cancer was found at a point when I had absolutely no symptoms.

For this season, Andrew is home when Carol needs him, and he has just been hired into a dream job where he will learn and bake and enjoy.

Sarah is safely at school and in an environment that will support her through all of this, and where she continues to grow into a beautiful young woman.

Annie is a one-hour plane ride away, and in an environment where all of the wonderful things inside of her are flowering for her future.

But the real thing that is coming through is that this is a timeout. Carol and I have both been getting a sense that this is a gift for all of us, and Robin came in today with the same message. The short version is...

You, Williams, take a seat on the bench. I'm pulling you out of the game until you can get back in shape spiritually, physically, mentally and emotionally. When you've done that, you'll be right back on the field.

So everything is off my plate and I can focus on my time with God, my time with Carol and the kids, and getting myself in shape to play the rest of the game. [ED: Stupid sports analogy quota filled for this posting; no more allowed.]

I'm pretty surprised to come to this point. I sure could not have predicted it three weeks ago when this was diagnosed, but here we are with this gift, this incredible opportunity to focus on things that are truly important. I pray that we will take full advantage of this, enjoy it for all it is, and prepare for whatever God has in store.

One more day behind...

Thursday, October 4, 2007

Yesterday was pretty full, but it's behind us at this point. Things went fairly well and the part was I least looking forward to, the lumbar puncture, was easier than I had expected. Carol-the-Nurse-Practitioner handled the procedure. She has been wonderful and is one of those people who actually combines a great gift of mercy with not taking any crap from anyone.

After the lumbar puncture, we added a whole new chemo cocktail which involved five different meds administered in various forms over 24 hours. I'm still on them until late afternoon today, then we switch to a less outrageous combination for the next five days or so.

Today's prayer request is for the person from food services (they call it "nutrition") who came by to survey me yesterday while I was asleep. My Carol asked that she come back today, with assurances that I would truly like to speak with her...

God's Inescapable Grace...

Friday, October 5, 2007

In 1985 I was asked to be involved in the startup of a company in Columbus. I joined the team and began a new professional adventure. The company subsequently went through some difficult times. I was asked to find a buyer for the portion of the business that I ran, which I did, putting myself out of a job.

As a result, I took a job in Philadelphia. Carol and I moved away, and there my faith was reawakened... again, that's another story.

1n 1990, I received a call from the CEO of that Columbus startup. He asked if I would be interested in rejoining the firm to work on a new concept, which became NautilusCD. I accepted and we returned to Columbus.

NautilusCD was an incredible idea that involved one of the finest and most creative teams of people I've ever met (including Carol). The concept was the publication of a monthly, multimedia magazine on CD-ROM disc. This concept was so far ahead of its time, it is hard to articulate at this point. All of us poured our hearts and souls into this effort, and it received significant industry praise – including being highlighted in a speech by Bill Gates – but NautilusCD never made the financial return required to succeed long-term.

In addition to the publishing group that created NautilusCD and the first-ever CD-ROM based college textbooks, the company also manufactured CD-ROMs. We lived or died by the success of the manufacturing business and, since it, too, was struggling to bring in enough revenue, a new VP of Sales was brought in from the CEO's old company, CompuServe.

Over the next five years, we all poured everything we had into making the company successful, but it was the manufacturing side that just had to be fed. As a result, tensions took over and replaced common sense on my part and I found myself in an extreme (and self-imposed) period of professional misery; I contributed to the company, but did not work as part of the corporate team.

Eventually the decision was made that I needed to go and a campaign began to help me realize this on my own... meetings with corporate, demotions, etc., until eventually I was laid off. Such an obviously unfounded and shortsighted action could not possibly be my fault! I focused my anger – and, quite frankly, hatred – on the one person whom I chose to blame. In my mind, he was the architect of this misadventure: the VP of Sales. I considered him to be the worst type of traitor, a non-believer in the power of NautilusCD and clearly ignorant of the incredibly significant contributions "I" had made.

Over the next year I continued to stew in my anger. Unrelated, the entire NautilusCD team eventually came under economic scrutiny, and Carol landed in the corporate, cross-hairs. Now, I'm old school about that stuff. Being born and raised from good Southern stock, you just don't mess with my wife, my children and absolutely not my dog. (Note that the dog did remain unscathed.)

By February of 1997, Carol and I were both gone from the company and, by God's Grace, neither of us missed a beat financially. I picked up consulting work and eventually a staff job, but I was mad, I mean really mad, at the person whom I had decided was behind our misfortune. In time, I developed a Pavlovian response to even hearing his name: hear it, hate it. And just as a bell continues to emit a lingering vibration even after it stops clanging, I could not (or chose not to) change my reaction.

Fast forward to 2000. We've started Neulogic, and, while it's struggling, we are surviving. Out of the blue, I get a call from "the architect" of that earlier, unhappy situation. He describes a project his new company needs to complete for a client and wants to know if it might be a fit for our organization. My immediate reactions came back hard and fast, but hey, there was money involved and we needed it, so I said "Sure, we'd love to talk."

This was God's Grace in action, although that realization came to me much later. Greg and some of his team members came to Neulogic, and I sat through the entire meeting wondering how I was going to get screwed this time.

Over the coming months we were able to work together, and a respect began to develop for the skills and gifts we each brought to the table. We even went so far as initial steps to sell Neulogic to a company Greg was putting together, an overture genuinely constructed on his part to help Marty and me extricate ourselves from a difficult situation.

Since that time, Greg has become a confidant, a mentor, a brother, and one of two men I can truly call best friend. Just for icing on the cake, he is also dating Carol's oldest and dearest childhood friend, and the four of us love spending time together.

I mention this not for his credit or mine but for God's, because, as Greg was leaving the hospital yesterday, I recognized this all so clearly that it had to be told. Short of God's Grace this could never have happened, and I am most thankful that it has.

Four weeks in...

Saturday, October 6, 2007

We're four weeks into this adventure. Only one month. It really is amazing how we can go from "normal" to this point in such a short period of time.

The more I learn about the chemo, the more interesting it becomes. One of the drugs I'm getting is methotrexate, which is toxic enough that I'm also given multiple doses of two other medications just to counter the toxic effects of the first. Sorta' odd to get a medicine for which you need an "antidote."

Over the next week my white cell count will begin to tank. We're already watching very closely for any signs of infection since the immune system is going to be so suppressed. The really fun one is something called muscositis (fair warning there are pictures) which can get so severe that you can't eat or swallow. That's certainly an extreme case, but mucositis is one of the most prevalent side effects of this chemo.

Blessedly, the whole process has been fairly uneventful to date, and I have little doubt that is an answer to a lot of prayer. Thank you all and please keep it up....

Take a moment

Friday, October 19, 2007

Marsh is home and sound asleep in his own bed. That's one happy guy upstairs! In the chronology of overlapping days and dates, this is day 17 of chemo Course II. I'm sure that doesn't mean a lot to you, and I'm coming to understand it shouldn't mean a lot to us, either.

That's a hard lesson to learn. As former broadcast producers, Marsh and I are both pretty good at controlling situations, anticipating complications, and devising multiple work-arounds for the inevitable changes that occur. And we never take "No" for an answer. But things are different here in cancer-land.

The science behind the cure that his chemo will provide must be "practiced," and each patient reacts differently. Thus the schedule is firm for when each round will begin (like next Wednesday, 10.24), but pretty squishy when it comes to the going home dates... It's a situation that only reinforces how little control we actually have. And it calls me to confession about "giving it all to God." I've done that -- handed this whole situation to Him -- but I never really let go. Then, each time I find myself frustrated when things aren't going the way I planned, I'm reminded: it's out of my control, but it's not out of God's. I'm reminded to give it all to God once more -- no, really this time.

I'm reminded that He's got it all covered: past, present, and future, so we can live now. And I'm reminded to take a moment... Maybe sit with Marsh in the Adirondack chairs under a true-blue sky, shaded by a golden-leafed tree, holding hands. What will you do with your moment?