An Interesting Adventure

The adventure begins...

1:50 a.m. Wednesday, September 5, 2007

I was awakened by severe chest pain and a shortness of breath. I got up, walked around a little and drank some water hoping it would go away. This had happened to me twice before in the previous 10 days and both times the pain had subsided. But this time it just got worse. So, I took the logical next step... I went downstairs and Googled "Heart Attack" to get a list of the symptoms.

Yep...

Yep, got that...

Yep...I got that, too

I finally decided that I needed to wake Carol up and let her know what was going on. After 23 years of marriage she knows that I use a certain tone of voice if I'm concerned about something and do not want to alarm her. She woke up immediately and wanted to know if we should call nine-one-one.

Now, on the surface this is a really simple question -- I was experiencing severe chest pain, shortness of breath and was a little light headed -- but then the defective "male chromosome kicked in." If I call nine-one-one, everyone in the neighborhood will want to know what's going on and if it's not a heart attack I'm going to feel pretty stupid. But, if I don't call, and it is a heart attack, I'm going to feel stupid ...and be dead. Now, to demonstrate how defective the Y chromosome really is, I actually took the time to think about these two options. Then I realized how mad Carol and the kids would be over option two, so we called nine-one-one. The compromise was that we asked them not to run the siren.

Not wanting to be dragged into ER wearing only my boxers and t-shirt, I got dressed, grabbed my watch and wallet and went out front to sit in one of our yard chairs until the squad arrived.

The squad arrived in about two minutes and we went through the drill with them. I climbed into the ambulance, got wired up, and played that great fun game, let’s find a vein. After an initial assessment it was recommended that I go to the hospital and have some more tests.

On the way to the hospital I looked up and saw the clock in the back of the ambulance wasn’t working. When I mentioned it to the paramedic, he replied, “…Don’t worry, the rest of our equipment works pretty well, most of the time.”

We arrived at the ER and were immediately taken into an exam room where they began a series of tests. After a while they asked if I wanted something for the pain. I said that would be nice, then I heard the “D” word: Delodid. Now, I’m a pretty large guy and when you figure out doses based on body mass, I wind up with a lot of whatever medication it might be. But as soon as I heard Delodid I made an effort to tell the nurse that I’m pretty sensitive to drugs and I’d like a very small dose…yeah like she’s going to follow my lead on this.

The next several hours were a blur, but some highlights include nausea, being poked, prodded and violated by a number of cold steel items, being asked my name and birthday about 200 times and a Cat Scan.

About 6:00 am the physician walked in and said that they had ruled out any heart problems: great news. Then she mentioned that during the Cat Scan of my chest they saw a “mass” in my abdomen that should be examined. So I was admitted for more poking, prodding and violation.

[ED: While my approach in sharing this is experience is somewhat tongue-in-cheek, I do want to stop and say that the hospital staff has been uniformly wonderful, attentive and proactive in communicating about what’s going on. I could not have asked for a better facility or staff under any circumstance.]

Next day...

Wednesday, September 5, 2007

O.K., it's not really the next day, just a continuation of the world's longest day. I'm in the hospital, I have a mass in my abdomen and it appears to be connected to a lot of things including blood vessels and intestines and that's all we know. Throughout the day a number of doctors come through the room and talk about what my new little friend may, or may not, be, but the reality is no one knows yet.

There is much discussion about a biopsy and the best way to get one. The choices are CT Needle or a minor surgical "snatch and grab" operation. The vote is for the CT Needle, it's less invasive and involves more gadgets, which those of you who know me know I'll always go for as a first choice.

Late in the afternoon one of the doctors uses a new word for the first time "tumor." It's not really surprise to Carol or me, but to hear it for the first time is still a shock.

More waiting and a roommate who fell asleep with his TV on MTV's Rap Nation Marathon with the speaker loud enough for me to enjoy it.

After I'm sure he is asleep, I unplug myself and walk with my little "IV" machine over to the other side of the curtain and turn his speaker down...

The orange stuff...

Thursday, September 6, 2007

3:30 a.m.
I'm having a CT scan at 5:00 a.m. and a CT Needle biopsy at 10:00 a.m. To prepare, I have to drink three large glasses of orange stuff...one every half hour. Oh, yeah "Good Morning Mr. Williams."

Everyone knows that anything medicinal has to go through extensive FDA research and approval; however, what most people don't know is that there is a second round of testing, post FDA approval. This second round is extensive and time consuming. Its sole purpose is to remove all taste -- or better yet to create a new taste which is so vile that it can only be described as a combination of Ouzo, NyQuil and the stuff you have to drink before a colonoscopy.

5:00 a.m.
Transportation arrives to take me to Radiology.

I'm wheeled into the room with the scanner and get on the flat bed. The radiologist comes in and tells me what to expect, which is generally lost on me except for the part where she explains that the dye they are going to inject will cause me to get warm as they inject it, and then make me feel like I've wet my pants.

Actually the experience was fairly interesting. I could literally feel the dye spreading through my body almost like a wave taking me over.

Enough said.

10:00 a.m.
Time for the biopsy...I go back to the CT lab, a path I can now navigate by ceiling tile, and meet the radiologist. He's about 12; no he really is. He walks me through the procedure which involves another full scan with more dye, and then he maps out a location on my stomach where he inserts a device about the size of a large knitting needle. The good news is that I truly don't feel a thing.

I hear four sounds roughly the equivalent to that of a staple gun and we're done.

Rest of the day
One of the doctors came by to talk about the biopsy and when we might expect results. He was really concerned that we receive some sort of information before the weekend. Eventually he said, "I think it's time to speak with an Oncologist. They seem to be the only people who can actually influence the pathology lab and get them to move a little faster."

Carol and I talked about all that's going on and decided it was time to start communicating publicly about the situation. The whole issue of communications is an interesting experience. More about that later.

As a first step, we called a good friend (who our children refer to as "the eighth wonder of the world,"). Adel and his wife Kelly are two of the smartest people I've ever known. When my father came down with cancer a few years ago, Adel researched various types of treatment and put everything I was hearing into terms I could understand. We knew we would definitely need some help in this area.

About two hours later I awoke to hear "Why don't we have a camera?" It was Adel and Kelly. I had been asleep and apparently Carol had found enough room in the bed to crawl in with me for a nap...

Word gets out...

One of the things that happens when you become ill, particularly when you're in the hospital, is that word gets out...to family, friends, work and others.

As soon as we found out that I was going to be in the hospital for a few days, communications became an issue.

Carol and I are firmly rooted in our faith and in our church family so one of the first calls we made was to our pastor. He came over and the guy is just a prince. He is the epitome of a gentle, loving man of God....he also is known to have an occasional fermented beverage and is very funny, in a dry Norwegian sort of way.

I also had to call my office and let them know that I was going to be out for a few days. The team I work with is amazing and some of the finest people I've ever known. To a person their response was...

Are you O.K.?

What do you need?

Don't even think about work!

That was actually the easy part. Now we have to think about the best way to let our family know what's going on. That is for another post.

Within about 27 seconds of letting folks know, Carol started getting emails wanting to know if we needed anything and how I was doing.

A long day...

Friday, September 7, 2007

The oncologist was to come early in the morning. When I awoke, Carol was already there and reading. As she said "We're going to nail his feet to the floor if we have to for some answers."

By 11:30 he had still not arrived, so Carol called the office and was told that he would not even leave there until 2:30. More waiting...

Even though all we knew was that there is a tumor, Carol and I talked about next steps. One thing we identified was the importance of creating a primary care team made up of friends and family. To us this means surrounding our family with a group of people we can lean on and ask to assist in any way without worrying whether we're inconveniencing them or not.

This may sound selfish, but it was an a-typical but critical decision for us at this point. We knew we would need people who could hold us up, help, make us laugh, keep us on the correct spiritual path, assist with knowledge about cancer, and just love our family.

So we started identifying our team:

• Science Advisors: Adel and Kelly (already providing invaluable input)
• Spiritual Director and Minister of Humor: Robin (supported, as always, by Diana, who must have more gold scars in heaven than anybody)
• Military Strategist: Greg (a tireless fighter who will never take "no" for an answer and loves a good battle)
• Prayer & Practicality Proponents: Anne and Bob (see, this is why you had to retire... to have enough time to take us on!)
• People who know us -- and love us anyway -- and will not ever let us feel sorry for ourselves or take any crap: Peggy, Kelley, Marty, Annie, Jane and Don

By mid-afternoon we were ready to go -- literally (Please, let us out of here!) and in terms of next steps: we decided to undertake this blog. I got dressed and managed to talk the nurse into disconnecting me from the IV pump.

Carol climbed into the bed and took a much needed nap while I began to type. About 5:30 the oncologist walked in, glanced at Carol asleep in the bed and me typing, smiled politely and went behind the curtain to the other side of the room in search of his patient. Seeing no one there, he looked back at us and asked quizzically "Williams?."

I raised my hand and he saw the hospital I.D. bracelets and the caped off IV.

He sat down with us and began asking a long series of questions related to my health and family history.

One of the things we learned that was very helpful was that my children and their cousins should consider genetic counseling based on our family history with cancer. This will help them understand the risks they may be facing, and enable them to be proactive as the grow up. It will also allow them to set up the necessary screenings, etc., that meet their individual needs.

After sharing what little specific information he could, the doctor indicated that he was trying to get a preliminary pathology report and would return after he finished his rounds.

About 6:15 he was back with the initial report: The tumor is a B-cell Non-Hodgkin Lymphoma. Yep, I have cancer.

That's all we know at this point. There are a number of subclasses of B-cell Non-Hodgkin Lymphoma, some of which are curable, and some of which can be nasty. We will not know more until Wednesday of next week, but, regardless of the details, chemo is the primary treatment approach and it should start within 7-10 days.

Time to get out of here, go for dinner with some friends, and start recruiting our team. 

Moving forward...

Saturday, September 8,2007

If you looked at our photo, you know that we have three children -- no, make that three fabulous children. Thankfully, Andrew, the oldest, is home for a season. By the grace of God, our daughter Annie is home from college this weekend to attend a wedding. We have decided to take advantage of having two out of three here, and tell them the little we do know about what's going on while we're all together. (The really down side of this is that our youngest daughter Sarah is away at boarding school. Faced with the dilemma of telling her at the same time -- over the phone -- or waiting until next Friday and flying over to tell her in person, we decide that she deserves to hear about it directly from us, face-to-face, so she can see that I don't look or feel sick.)

I got up, made the kids breakfast and dragged them out of bed -- they are not early risers, so Carol and I definitely had them at a disadvantage doing it so early -- to eat and talk together. We have arranged for our science adviser, Adel, to join us, too; the kids adore him and trust everything he has to say.

The conversation went very well; Andrew and Annie are so spectacular. In an effort to avoid falling captive to that-which-shall-not-be-named, I made them each say, "Dad has cancer." Then, as we were winding up, Andrew walked into the living room with the coffee pot and said, "...there's one cup left. Who wants it?" Carol, Adel and I all wanted it, but I played the trump card and said "...I should get it...I have cancer." We all broke up, Andrew threatened to pour it on my head, and we began to imagine scenarios where we could play the C-card to our advantage. The laughter-release was wonderful.

The rest of the day was just spent processing.

Post Script

10:30 p.m. The phone rang it was the emergency room of Frisbie (that's really the name) Hospital in Rochester, New Hampshire. Our youngest has had an accident at school and torn up her shoulder. We spent the next three hours making arrangement for Carol and Kelley (from our primary care team) to fly up to be with Sarah and talk with the surgeon.

I have to stay home for my first meeting with the oncologist on Monday.

O.K. This is getting to be a little over whelming...

Off to New Hampshire...

5:45 a.m. Sunday, September 9, 2007

We're on the way to the airport to put Carol and our friend Kelley on an airplane to see Sarah and meet with the orthopedic surgeon at Frisbie Hospital. We really do not know what the current situation is but it will work out.

I go home and climb back in the bed.

About 10:30 I wake up and think that I slept pretty well then there's this new thought in my head, " Oh yeah, I have cancer." I'm actually pretty upset about sleeping through church.

The day is really spent trying to get things under control in New Hampshire and the decision is to not operate but wait a day and get an MRI to better understand what is going on. Kelly comes back on a late flight and Carol crashes at the hotel.

Tomorrow is the first step with the oncology doctor. I have to get some additional blood tests... then Wednesday we have a 10:20 appointment to get the full pathology report.

God, something is up here. Please give us the ears to hear and the heart to understand
what you want. If that doesn't work, get out the Louisville Slugger with my name on it.

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.

I'm on hold; Sarah's the one...

Monday, September 10, 2007

Called the doctor to find out about blood tests. It can wait until Wednesday when we have our next meeting with the oncologist.

The saga of Sarah's shoulder

O.K., we're going for an MRI, but the machine must be brought in on a portable tractor-trailer and accompanied by a technician. But wait, there's more. Since it's a Dye test, we need a radiologist, but we can't seem to find one. Is the radiologist in the ER? Oh, no. Is the radiologist in their office? Oh, no. Is the radiologist in...let's cut to the chase; there is no radiologist. A minor scheduling SNAFU.

Carol clicks into "producer mode" and spends the entire rest of the day trying to get an MRI scheduled the next day (thankfullly!) instead of one week out, which is the first "available" appointment.

Birthday...

Tuesday, September 11, 2007

Sarah's 17th Birthday! And what better way to celebrate than have saline injected into your shoulder and get an MRI...way more fun that Chucky Cheese! (Actually given a choice, anyone who has been to a birthday party at Chucky Cheese would probably pick the MRI.) Still, Sarah's a trooper, and the blessed end result is that surgery is not required. Praise God.

Carol was incredible. She managed to get the procedure accomplished at a local orthopedic facility, with the orthopedic specialist handling the injection and reading the results (since a radiologist was unavailable). The facilitiy's team was awesome (and it didn't hurt that Kelley and Carol thought the orthopedic surgeon was pretty cute.)

Not surprisingly, Carol and Sarah took good advantage of their time together -- and the fact it was Sarah's birthday -- by going on a boondoggle that ended with a fried lunch at Friendly's plus LOADS of birthday ice cream, not to mention 75 Dunkin' Donuts heading back to Shortridge.

The whole day becomes great news when we learn that Sarah does not have to have surgery. That means she can be safely, if sadly, reinstalled at school, and Carol can catch the late flight home to be with me for the oncologist appointment on Wednesday. Between dropping Sarah off at school and getting to the airport, Carol heads to dinner (and "care-apy") with a dear friend who just happens to live in Portsmouth. Thank you, God.

After dinner (lobster, thank you very much, Norma), it's off to the airport. Pease International Tradeport is a small airport that's very convenient to get into and out of; that's the up-side. The downside is that Carol was on the last flight out, so the place basically closed after her plane loaded. However, there were mechanical problems, the fire department was called, the passengers had to be evacuated to a waiting area (but the bathrooms were beyond the TSA security zone...). Delayed flights, tired kids, crabby adults, and no access to bathrooms; yep, that pretty much sums up air travel in the United States during the summer of 2007.

The flight finally arrived at 1:25 a.m.

Once home, I started thinking about meeting with the oncologist the next day and stayed up until about 4:00 a.m.

O.K. Six hours and twenty minutes until the appointment.