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Rectal Cancer Versus Brain Cancer

April 27, 2013

Hey everyone,

As a general warning, this post mostly has to do with my rectal cancer, and there is going to be a lot of content regarding my rear end and bowel movements. To be clear, this post is pretty graphic, and I will be very candid about my second bout with butt cancer (all the English majors will appreciate the alliteration in that last sentence). As I’ve said before – if you are queasy, I suggest you get the cliff notes from someone else and simply wait for the next post. Furthermore, the fact that rectal cancer is much less of an interesting topic than brain cancer is not lost on me. I’ll try to pepper in some butt and fart jokes to make this post a little more lively.

Yesterday morning I met with Dr. Amy Thorsen, who will eventually be my rectal surgeon. Before I go into that meeting though, I think it makes sense to provide you with the truncated version of my bout with colon cancer at age 17, as it is very applicable to the rectal cancer I have now.

When I was 17, I began getting symptoms that were very odd for someone of that age. I was fatigued all the time, I was losing weight, I was pale, and I had blood in my stool. After about a month of various doctors trying to figure out what was wrong with me, they found about 300 polyps on my colon, one of which turned out to be a cancerous tumor. They also found a small tumor on the upper portion of my rectum at that time as well. As a result, I had to have a pretty major surgery where they removed my entire colon and the upper portion of my rectum. The doctor who performed the surgery then took the bottom portion of my small intestine, made a small “pouch”, and then connected that to the lower half of my rectum. As a result, I can go to the bathroom normally (albeit a little more often than the normal person), and have not had to have a permanent ostomy bag. If I remember correctly, my recovery time after this surgery took about one month; I was bed ridden in the hospital for more than a week, and then started gingerly walking around (still in the hospital) after that. Chemotherapy again, if I remember correctly, came soon after and lasted 6 months. After that, I was cured (relatively speaking).

That was the very, very short version of my colon cancer experience. Now, on to yesterday’s meeting. Dr. Trusheim’s assistant told me the day before that the purpose of this appointment was to meet the rectal surgeon, and to get a rectal ultrasound. The concept of a rectal ultrasound that came to mind at the time was very similar to a normal ultrasound. That is,  they would be  running a camera over the skin on my stomach in order to take a look at the insides. Spoiler alert: I was WAY off base with this assertion.

My parents drove me to the hospital (I can’t drive a car until June), and I was quickly brought into an examination room by a nurse. She told me to disrobe and lie down on the gurney, and left soon after that. As I sat down to take my shoes off, I noticed a tray right next to the bed that I was supposed to lie down on. On this tray were a few devices that looked like they came straight out of a horror move, and the true meaning of what a rectal ultrasound would entail began to dawn on me. Knowing where those devices were meant to go, I immediately began trying to plot my escape; with no luck.

Soon after this, Dr. Thorsen came into the room with a few assistants. She was very, very nice, and began by sharing with me that she actually used to be partners with the doctor who performed my colon surgery 13 years ago. She also, I think, gathered right away that I was very nervous and did her best to calm me down and make me comfortable. I applaud her efforts – I could tell she was a very good doctor – but the success of her attempts were minimal; to be fair, through no fault of hers. Dr. Thorsen then asked me if she could begin the examination with her finger, and I begrudgingly agreed. To be clear, through my experience with colon cancer, I’ve had some things “go there”, and my singmoidoscopies that I had before my brain surgery were also done there as well, so this wasn’t my first experience with an “invasive” examination. That said, I have always been put under some sort of anesthesia which made the previous experiences tolerable. Dr. Thorsen, however, did not give me anything before she started. Which. Made. This. A. Very. Unpleasant. Experience.

In fact, it was so unpleasant that after about 10 seconds I hear her say to her assistants “The ultrasound is not going to happen,” and she immediately stopped. By the way, I hope I am not painting a bad picture of Dr. Thorsen, I liked her immediately, and still do; I am very glad someone as smart, talented and kind is going to be performing this surgery.

In any case, after we were done in the examination room, everyone left to allow me to put my clothes on, and I met all of them in Dr. Thorsen’s office. She began by saying in her opinion, the rectal cancer was probably directly connected to my colon cancer 13 years ago. In her estimation, the tumor most likely regenerated from the “cuff” of the rectum that was used to connect it to my intestinal pouch. Therefore, this is the first time I’ve ever had a cancer that resulted from a previous experience of cancer. Oddly, this makes me feel better about this latest experience. It just seems bizarre to me that someone can get lymphoma, colon cancer, and brain cancer – completely unrelated – by the age of 30. Attempting to wrap my head around that when I first found out about the brain tumor a month ago was starting to drive me insane, so I quickly stopped trying. Getting rectal cancer as a result of colon cancer, on the other hand, makes sense to me; I see the causality. If you folks remember propositional logic from high school or college calculus, I see the “If P then Q” with my rectal cancer.

In any case, Dr. Thorsen also mentioned that we should start right away with the chemotherapy and radiation for the brain tumor, and that we should wait to have the rectal surgery until after that process is over. This is because the brain tumor was/is clearly more aggressive than the tumor in my rectum, and the brain tumor needs to be addressed right away. If I were to have the rectal surgery as a next step, I will be in recovery for a long period of time, much like my colon surgery when I was 17. In her estimation, too long before I could start the radiation and chemotherapy process in my brain. Dr. Thorsen went on to say that the tumor in my rectum is relatively small, and is not likely to spread anywhere else before I have the surgery. She did, however, mention that we do need to figure out the exact size of this tumor. In other words, we need to figure out how deep into the tissue the tumor goes. We need to know this because when it comes time to address this tumor in a few months, the size matters as to how we start treatment. Specifically, if the tumor is not very deep, then we can start the treatment with chemotherapy and possibly radiation. If, however, the tumor is fairly deep and invasive, then surgery will have to come first. Thus, she scheduled an MRI on this area for me next week, which apparently can provide us with this information.

I then started asking Dr. Thorsen a few questions regarding the surgery. I got the sense early on in the conversation that she didn’t want to get into much detail about the surgery now, preferring a measured “let’s cross that bridge when we get there, and take one step at a time” approach. That said, she could tell I was curious, and was then as candid as she could possibly be with me. Specifically, this will be a very major surgery. They are going to remove my entire rectum, as well the pouch that the original surgeon created 13 years ago. This will mean that I will have to be fitted with an ileostomy bag (look it up on Google if you don’t know what it is), and I will use that to go to the bathroom for the rest of my life. This was probably the worst news I’ve received since this whole process started, and something I am absolutely not looking forward to. I had this type of pouch for 2 months when I was 17 while everything below healed, and it was not a fun experience. The thought of having an ostomy for the rest of my life is not a pleasant one.

That said, it is a small price to pay for good health, and if this is what has to happen, this is what has to happen…Bring it on. To be sure, I will be relishing these next few months before the surgery with an undeniable fervor.  Who knew someone could be so excited to have normal bowel movements!

Next Steps: I have a crap load (no pun intended) of appointments next week. Monday, I get the stitches out of my head, and more important, I meet with the geneticist to figure out if I indeed have a genetic disorder. This is probably the most important meeting I will have, as the results will give Dr. Trusheim the final pieces of information he needs to map out my chemotherapy and radiation treatment plan. Moreover, that is going to be the most fascinating test to date – all the chromosomal and DNA conversations a person can handle, I imagine. Next week Tuesday I am also meeting with the radiation oncologist, Dr. Moynak, who will be helping Dr. Trusheim with my brain radiation piece. Finally, on Friday I am meeting with a general oncologist, Dr. Seng, who will be in charge of planning out my treatment for the rectal cancer.

I am assuming that the radiation and chemotherapy on my brain will now start very soon – if not the week of May 6th, the week following. As an aside, the original title of this post was going to be “Surgery Will Wait – Chemotherapy and Radiation are Next” but I figured that this title would have given away too much information too soon…I’m totally getting the hang of this blogging thing.

In all seriousness though, I could not be happier with my experience at Abbott so far. HCMC was great; the doctors and nurses were all very smart, caring, and kind. That said, I feel as though the staff at Abbott have more flexibility to move quickly than HCMC because they have more doctors and less patients. I feel like I am in very good hands, and looking forward to getting this process started; the sooner we start, the sooner we get done…and the sooner I go to Europe.

Onward and Upward,

Eddie

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5 Comments
  1. Sister Katherine permalink

    Thanks for filling me (us) in….it is hard for me not to keep up with what you are going through. So each blog is wonderful to receive, though hard too. Let me know if I can do anything, if Bill and Chouhei need anything that I am not picking up-something I could do for them. But you know, I am standing vigil with prayer. Sister Kath

  2. Eddie please know that you are surrounded by support and prayer from near and far…thinking of you and sending much love to you and your family. -Courtney & the boys

  3. Louis Villaume permalink

    I am a fellow blogger. I have been blogging for star tribune for last four years on the Vikings. And while I am very confident in my literary skills, I confess you are my better. Well written… I am ready to read-a-long with you. Keep them coming. It was a tough, but thoughtful read. I felt many emotions, which means you are doing your job. And I like you.

  4. Perry Rogotzke permalink

    Hey Buddy,
    It was great to see you yesterday and I laud you for your open candor and willingness to share about this whole process. I definitely know that your humor and positive attitude will help you along this journey, albeit an unpleasant one, for little while. Your friends are here to support you and are rooting for you all along the way, so do not be too proud to reach out for help or a lift in your spirits when you are having “One of those days”.
    See you soon.

  5. geoff bush permalink

    hi Eddie – i don’t think i have spoken with you since we were BDC’s. Just want to let you know that I am just catching up with your blog tonight. I heard about your story through a golf event through Oracle. I don’t golf… but I am glad I read your blog and want to let you know that folks are pulling for you in Massachusetts and all over Oracle. I am glad to see you are getting great care and look forward to seeing you move on to the next stage in your life.

    Best wishes to you and your family –

    Geoff Bush

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