An Interesting Adventure

Epilogue

I'm siting here on January 28th 2011 and just had occassion to reread some of the bolg...brings back a lot of memories and emotions.

The great news is that I'm still cancer free and on April 8th I will be declared cured.

God is good...

Marsh

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.

Wednesday Part 1: Oh, my goodness!

Wednesday, September 12, 2007

The background...

One of the "givens" Carol and I have established is that we want to work with an organization which will treat me, not just my cancer.

To put this in context, I watched my father go through his bout with cancer. His physician was a very talented oncologist and a wonderful person, but he was singularly focused on treating dad's cancer, not dad as a person. At the end of the day, treating the cancer is the most important item, but I also watched my parents go through the ordeal with little guidance and no counseling of any kind. The doctor focused solely on the cancer that just happened to be inside my dad.

We have a very tight family and, as I said previously, no one has cancer by himself. This is our family's cancer; it just happens to be in my body. By this I mean it touches all of us in different ways and we all will need treatment of one type or another as the adventure unfolds. So it is our hope to find a physician who will work with all of us as part of a holistic process

The experience...

Today was the day. We were supposed to get the final pathology report. It's a little unnerving because now it's real, but we're doing great.

We arrive enmasse: me, Carol, Andrew and Carol's sister who is a geriatric nurse....pause here to consider all of the obvious jokes...now breathe and resume reading.

Walking into the oncologist's office was like entering any other doctor's office. I signed in with a receptionist who is clearly frazzled trying to deal with incoming patients and their paperwork. I'm handed a clip board and told to fill out the forms and bring them back as soon as possible.

[Ed: Let's pause a moment for a rant on doctor's forms. DOCS: WHAT THE HELL ARE YOU THINKING? Seriously, we were given seven forms, all of which asked for much of the same information. From my viewpoint, we're not just your patients. We are actually customers, and this is one of the least customer-friendly processes on the planet.

For all of you medical professionals who drive a Lexus, BMW or Mercedes, think about the customer experience your car manufacturer and dealer provide. Don't you love to be treated that way? It really is wonderful, personal, and geared to make you feel good about the entire experience. Now compare that to what your customers go through in your medical practice...]

After tackling the medical forms I was called back for lab work. I walked in and was told to sit down and place my arm on the pad, "Here we go..." The lab-tech proceeded to take four vials of blood while not even acknowledging my presence in the room or existence as a person. Not one word of direct contact or communication. Instead, she spent the entire time talking over her shoulder to a colleague about some email they did not receive that morning. "Keep pressure on this..."

Next we went into the examining room where another person took my blood pressure without a single word of interaction.

Now,, the doctor arrives. I actually like the oncologist a lot. He clearly knows his stuff and is working very hard to communicate with us about where we are and what's in store for us on this adventure, but he is talking at the speed of light. Carol finally had to stop him, and literally told him to "breathe."

He responded by saying "Well, I'm at the ifs-portion, and I don't like this part so I go through it quickly." I can actually appreciate that. But we heard so many details so rapidly (Carol interrupted him a second time to ask him to "speak English")... Regrdless of the delivery, the message is clear: we're rapidly picking up speed on this journey; the next two days are scheduled back-to-back with procedures and tests.

Now we adjourn to scheduling to set up all of these appointments. This is one of the single, most stressful environments I've ever been in. Seriously, the staff was yelling across the room to each other. People (staff and patients) were clearly stressing all over the place, and over my shoulder was an open room full of folks getting their chemo for the day. Now I hear someone say...

Scheduling lady: "Mr. Williams, can you please go to the lab, they need to draw blood?"

Me: "I'm sorry they already did that."

Scheduling lady: "Are you sure? I don't have that on the paper..."

Me: "Yeah I'm pretty sure."

Scheduling lady: "Well let me call them and make sure."

Me: "O.K."

Scheduling lady: "Oh, you're right, but they need more."

Me: "Are you sure?"

Scheduling lady: "Oh yes, they need more."

Since we already covered that customer service experience I'll just move on.

But I do need to point out that it was 45 minutes later and the discussion was still going on about the email that had not come in. "Blah, blah, blah, keep pressure on that."

By the time we left the office, I was completely stressed by the overall environment; I swore I would never set foot in that place again and began making a series of phone calls to people who could help me find another oncologist immediately.

Wednesday Part 2: Thanks be to God!

Coming out of the oncologist's office, I felt overwhelmed for the first time, not because of the rapid detail we had fielded, but because of the chaos of the office itself.

So, after talking with Carol, we decided to exercise some control over whole situation and find a new oncologist. This is absolutely no reflection on the skills of the doctor with whom we have been working, but rather a statement that we need a better "match" for our needs.

We are fortunate to have a number of friends who have offered to help in anyway possible, so we are using that network to find another physician. We are also fortunate to have one of the finest cancer treatment centers in the world about two miles from our home: The James Cancer Hospital at The Ohio State University.

Before long, my requests began to pay off. About 5:00 p.m. the phone rang. It was one of the head physicians from The James. Don't overlook this; he called us! He wanted to know what was going on and how he could help. Thank you, God.

We filled him in on the situation and he said "...Let me call you right back." Five minutes later he called with one of his colleagues on the phone and we spoke for about fifteen minutes. I loved everything they had to say, and that was that. We are moving to The James.

Now on to how we accomplish this...

First we have a number of events scheduled for the next two days.

Thursday morning I'm to have an Infusaport implanted under the skin in my chest. This is a medical device that allows for delivery of drugs into the system without hunting for a vein every time. For me this is great because my veins play "hide and seek" every time someone shows up with a needle.

I'm also supposed to have an echo cardiogram Thursday afternoon, and Friday morning I'm scheduled for a bone marrow biopsy (that's going to be fun) with a Pet scan that afternoon.

We reviewed all of this with the new doctor and, due to timing, he recommended that we keep the appointments for the Infusaport implant, echo cardiogram and Pet scan, but that we drop the bone marrow biopsy. (Yeah, I'm pretty upset about not having an auger inserted into my hip and being hit with a hammer until it penetrates the bone.)

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.

 

O.K., now it's getting real...

So far there's been this complete disconnect between the fact that I've been told I have cancer, and the fact that I do not feel one bit different or ill. Every once in a while I get a millisecond flash of reality but then it's gone just as quickly as it came.

I just do not feel sick, it's that simple, so trying to reconcile that with all that's going on is difficult.

But now the process is starting to take shape and become very real. Thursday (09.14) I had an Infusaport implanted into my chest. This was a pretty weird experience -- essentially I had a device placed under my skin that will allow for chemo and other meds to be "mainlined" into my system. This port sits just under the skin at the right clavicle and will be used to administer fluids and draw blood during the coming months.

While the implant did require minor surgery, it will be infinitely preferable to playing "find a vein," one of the recurring themes in this unfolding adventure. The surgery itself was actually pretty painless. They put me into a twilight sleep and, while I could feel the pulling and tugging, there really was no pain.

I was released within about 45 minutes of reaching recovery. The only difficulty I had was with a product called TegaDerm which they used to cover the wound. For some reason I developed a severe rash around the edge of the bandage and it itched like the devil. As soon as I took it off I was fine.

Amazingly, one of the tech's from my surgical team actually called me at home the next morning to see if everything was alright and if I had any questions.

After the surgery I came home and took two Tylenol. What I did not realize was that they were Tylenol PM and yes, they work really well. I was out from 3:00 p.m. until about 10:00 p.m.

One sidebar of interest was a discussion I had with the new oncologist about the port, prior to its installation. I asked him if there was anything I needed to be aware of, and he said, "Just make sure it's a dual lumen port." He indicated that anything else would be unusual but, just in case, I should ask the surgeon doing the implant.

Sure enough. When the surgeon showed us a sample (which I really appreciated), and I asked if it was a dual lumen port, it was not. The original oncologist had ordered a single lumen port. The surgeon let him know that the patient was requesting a dual lumen port. I'm sure this doesn't happen every day, but none the less the request was made and approved.

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.  

Mondays...

It's Sunday night. I'm not looking forward to tomorrow.

At some point in the morning we will get a phone call to come into The James for a bone marrow biopsy. I skated on this last Friday, but this one is going to happen. Please pray for patience and tolerance.

And we're off...

Monday, September 17, 2007

We received a call from The James Cancer Hospital this morning letting us know that I was going to be admitted today. Even though this is only one day earlier it has thrown us for a bit of a spin. Nonetheless, we are off for the initial stay and chemo.

The first event is the much dreaded bone marrow biopsy and, because I'm so special they're going to give me a two-for-one deal...I get one from each hip.

I've been thinking about how to describe the experience and I'm really struggling with this one; however, think back to that National Geographic special you saw on Global Warming and the last Ice Age. Remember when the scientist mucked out to the tundra and drilled down about 500 feet for a core sample? Well that's pretty much the way a bone marrow biopsy works, except for the fact that I had more people involved and they did not have to go the full 500 feet. Actually while it was not fun at the time, it was not as bad as I had it made our to be in my mind. When were finished the nurse practitioner told me that if I had this done again make sure and tell them to use the long needles. She used a fancy term, but the lay translation is you have a big butt. Yeah, just wait until I've had my six months of chemo sister, you better get those short needles ready.

If anyone need more details let me know, but that should suffice.

We're STILL waiting on the final molecular study, which was supposed to be in last Friday, to confirm the Burkitts diagnosis, but I'm all ramped up for chemo to start this afternoon.

It's still surreal at this point because I do not feel sick! Until the bone marrow thingy I thought this could be the most elaborate practical joke ever played.

At any rate there are a lot of people here much worse off than I am, so I should just shut up and be thankful that I do feel well.

Now for our daily science lesson. There are only about 300 cases of Burkitts Lymphoma in the U.S. every year. The James sees about five or six and they always seem to come in multiples, two or three every six months or so. Another person was admitted with it last week and everyone was commenting on how weird it was...

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.

It's clean...

Tuesday, September 18, 2007 7:30 p.m.

We just received the results of the bone marrow biopsy and everything is clean. The cancer has not spread to the bone marrow and this is good news for two reasons. First, it means this sucker will be a littler easier to beat and second I will not have to go through a bone marrow biopsy every few months...not that it wasn't fun.

The other news is that Genzyme, the lab doing the molecular study that we've been waiting on, has promised to get the results out tomorrow. So that will be huge. We've been struggling with this since the need to treats Burkitt's is fairly urgent, but the testing has taken almost two weeks.

The other good news is that we have been moved into a private room. This is actually a necessity since the chemo is so nasty that it essentially kills not only the cancer but also all of your immune system in the process. As a result there is a requirement to be fairly isolated once this thing gets going. But, the best news of the day is that we found pizza place across the street that will deliver. This will become our primary source of bribery for the staff. Carol and I have talked about ordering for them every so often.

Prayer Request...

Wenesday, September 19, 2007

We would love prayer for some answers today and delivery of the information we have been waiting on from the genetics lab.