I just had quite a scare, but it turns out I am doing ok and everything is all right.
This has been a great year for me and my resolution to get into shape. Rick talked me into running the Sugarloaf Mountain Marathon in Maine on May 15th with Amy, Will, and Cory. I really worked at it and got in pretty good shape. Michelle and I visited New Hampshire and picked up Rick, Amy and Cory in Portland and then went onto Will’s school. By that time everyone else had wimped out and I was the only one running the Marathon. So Will took us to the Rock Wall where everyone made it to the top, except me – I was the wimp. We drove up to Sugarloaf and the next day I ran the Marathon in a 4:11 time in the rain and cold. It felt so good. Amy and Cory ran the 15K and did great, even though no one was there to cheer them on at the finish line.
I kept up the running and completed a half marathon in Minneapolis on the 4th of July. The summer was hot so my training suffered a little but I was still in good shape.
Sometime in August I told Michelle that I had this hard lump in my stomach that bothered me. It just wouldn’t go away. I told her I would make an appointment to get a physical. The earliest time available was the 7th of October. I went and got my blood work done and went for the physical. Everything was in great shape, my cholesterol was great, the blood results were perfect, but the doctor said I should go get a chest x-ray and CAT scan on my pelvis to see what was bothering me. I got the chest X-ray that day, but scheduled the CAT scan for the 18th of October and a follow up with the doctor for the 7th of November.
I went in for the CAT Scan at 10:30 AM and then went to work. I got a phone call at about 1 from the doctor’s office saying the doctor wanted to see me the next day, not in 2 weeks.
Sometime in August I told Michelle that I had this hard lump in my stomach that bothered me. It just wouldn’t go away. I told her I would make an appointment to get a physical. The earliest time available was the 7th of October. I went and got my blood work done and went for the physical. Everything was in great shape, my cholesterol was great, the blood results were perfect, but the doctor said I should go get a chest x-ray and CAT scan on my pelvis to see what was bothering me. I got the chest X-ray that day, but scheduled the CAT scan for the 18th of October and a follow up with the doctor for the 7th of November.
I went in for the CAT Scan at 10:30 AM and then went to work. I got a phone call at about 1 from the doctor’s office saying the doctor wanted to see me the next day, not in 2 weeks.
I thought this doesn’t sound good but I said OK.
At 3 I got another call from the Nurse saying, it was very important that I got into see the doctor the next day and verified my appointment time.
I thought, this really doesn’t sound good.
The next day I saw the doctor and he said the CAT scan came back and showed that I had enlarged lymph nodes along my spine that appeared to be lymphoma. Due to their location he recommended I see a surgeon about getting a biopsy. I went downstairs and made an appointment to see the surgeon the next day. I went home and put Google through its paces looking up lymphoma. I was relieved to see that in the last 20 years Hodgkin’s Lymphoma is pretty easy to attack and Non-Hodgkin’s Lymphoma was for the most part a long term problem. I didn’t see a lot of problem with it, but just the idea of cancer scared me. Luckily Michelle was able to accompany me to the surgeon the next day. He said that he could feel an enlarged node in my groin and recommended we take one of those out to see what the deal was. We made an appointment to have surgery on the 11th of November. The 11th was Veterans day and I would not have to miss a day of work.
I did some research on Lymphoma but was not really all that worried.
On the 11th I went to the Hospital and had the lymph node removed. The surgeon talked to Michelle and I and said he hadn’t heard anything from the pathologist, but it appeared to be lymphoma “like” to him. He explained there were 3 different phases of testing for Lymphoma and it would take time to get all the results.
He would let us know, and I was to see him in a week, the 17th of November. I heard nothing from the doctor through the week and thought that it probably wasn’t lymphoma because he would have called.
Michelle accompanied me to the surgeon’s office bright and early the morning of the 17th. We were escorted into the examining room but instead of the doctor coming in the Physician’s assistant came in and said, “I’m here to discuss the next step in your cancer treatment.”
Both Michelle and I just stared at her.
She said, “Oh, you didn’t know?”
We said, “No, although we thought it might be.”
She said, “Let me go get the pathology report and the surgeon. She went out and came back with the pathology report for the first two phases of the testing, the visual and the Flow Cytometry; the Genetic tests were not done yet.
The PA went to get the surgeon. I read the report and saw that I was diagnosed with Chronic Lymphocyte Leukemia (CLL), and they listed all the markers. I whipped out my smart phone and tried to see what that meant. The first site I saw said the type of markers were important in determining the prognosis and that CD38 was a bad thing if it was greater than 30%, but it had to be correlated with the Genetic tests to be sure of the prognosis. Mine was at 57%.
I definitely did not have a good feeling.
When the surgeon came in I asked what this all meant. He said he was not an oncologist and really didn’t know what those numbers meant. He recommended I make an appointment with an oncologist after Thanksgiving, that way we could be sure the genetic tests would be complete. I called and made an appointment for the 30th of November.
Now my pessimistic side reared its ugly, destructive head. Damn having a little bit of knowledge provided by Google Searches!!!! If you search for CLL with CD38 Greater than 30% you get different scenarios based on the genetic mutations. I researched the different gene mutations and saw that for some people the Median survival rate was 2 years, for others it was greater than 20.
Until you get hit with the reality that you may only have 2 years to live, you really don’t think about a lot of things.
Until it becomes a real live possibility you don’t really think about things like Holy Shit, what if you really were only going to see 2 more Christmases, what if you never get to see Penelope go to Kindergarten, much less high school and college.”
I could not wait for the Genetic tests to come back.
My mind went into overdrive or maybe it was in overspin. My first thought was “How do I tell everyone?” “Do I tell anyone?” “Won’t people start treating you different? What good would that do?”
“I better get all the things that are wrong the house fixed right away, I can’t procrastinate.”
“Do I really want to work on the final paper for my history class that is due the 30th?”
I could tell Michelle was thinking of a lot of different things too; I came into the room and she had the life insurance policy out and the calculator on the computer.
I thought “if I only have 2 years left do I want to spend so much time driving back and forth to a job that no one even cares if I show up or not?” “When I leave that job, will I have made any difference at all?”
The doctor’s office promised they would call when the results came back, but seeing as they didn’t even tell me that I had lymphoma, I made a habit of calling every day. The Wednesday before Thanksgiving I called and they said, “No data and we are closed on Friday, so we will call you on Monday when we know what the story is.
Luckily Jennifer and her boyfriend, John, came over for Thanksgiving. John and I spent the afternoon tasting my home made Scotch and just enjoying the great meal and hanging out. For most of the day I didn’t even think about what my Gene mutations would be. That weekend I spent two full days in the library working on my paper and managed to really immerse myself in reading nineteenth century newspapers. I even scored a free 2 month subscription to the British Library’s on-line collections. Michelle and I made a date to go to the Mall and go Christmas shopping on the 3rd. We were doing things that mattered, not just sitting at home on the computer or crap like that.
My priorities of what was important had really changed. I didn’t even fire up the work computer the whole damn weekend.
On Monday the surgeon’s office said “sorry no results.”
I said, “I am going to the Oncologist on Wednesday and need those results.”
She said “We will check and call you right back.” No call back - those A**holes.
Tuesday I called and they said they would check and call me back. I called 1 hour later and they said, “Oh, yes, we did call the Pathologist and they said they insufficient material to perform the test.” The office was going to have to call the surgeon to see what he wanted to do next.
Really? You had the lymph node since the 11th and NOW you tell me you don’t have enough material. What the hell is wrong with you people?
Now I did not have the genetic markers I thought were necessary to make a good prognosis.
Michelle and I went to see Dr. Spira who sat down and explained that CLL is something that is not curable, and they usually don’t do anything until the symptoms become something that bothers the quality of life. He said this cancer is very slow growing and most people never develop symptoms, in fact most people die WITH the disease instead of BECAUSE of the disease. He felt that it was just an accident that we found the disease and that in most people it would not even be diagnosed for many more years. My blood counts, (White and Red Blood Cell counts) were in the normal range and until they started to go whack-O there was nothing to get excited about.
I asked about the CD38. He said, “Yes that does increase your chances of a poor prognosis but nothing beats using clinical symptoms to determine each individual case and you don’t show anything to be worried about.”
I said what about the genetic tests. He said that it came back negative.
I said that they told me there was insufficient material.
He said that insufficient material meant that the number of cancerous cells was not enough and they did not divide sufficiently to make any test. In other words, they were not acting like aggressive cancer and so the test really was negative. My understanding of what the nurse said and what was the test results really meant were two different things.
However, he said he wanted to schedule me for a full body scan to get a baseline on how widespread my enlarged lymph nodes were, and to compare against my CAT scan from a month ago to see if there was anything to worry about.
On the 7th I got the results. I have low grade lymphoma and if it follows the normal pattern I shouldn’t have to worry about anything for 15 to 20 years.
I still have tests with my bladder to see what that damn lump was that I originally worried about, but the Urologist doesn’t think that is a big deal.
But I can tell you one thing – this experience really shook me up. I know one thing for certain, you think about entirely different things when there is a real probability that you may only have 2 years or so left –
What would you do with your last two years?
Even more important
Why don’t you do those things now?
