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A Plan Has Been Set Into Motion (Sort of)

April 25, 2013

Hi All,

To start, I would like to share a story that shows how hilarious parents can be. I had dinner at my folks’ place on Sunday, April 21st. After dinner, my mother, Chouhei, my dad, Bill and I were sitting around the table chatting about my chemotherapy and radiation treatments that will be occurring in the all-too-near future. The discussion of losing my hair came up, which, for the record, I could care less about considering I have a huge scar in the shape of a question mark on the right side of my head. For those of you who do not know my mother Chouhei, she is a very caring, loving mother, but definitely isn’t afraid to tell it like it is to anyone, including her children. I share this with you now because I don’t want you to misconstrue perhaps one of the most funny things I have ever heard her say. She took the opportunity while we were discussing chemo to tell me “On the bright side, maybe losing your hair will finally solve your terrible dandruff problem. That’s the one thing that we may be able to look forward to out of all this.” Oh. My. God. We all started laughing immediately after she said it. Chouhei ‘Tiger Mom’ Min never disappoints.

This morning, we went to Abbott Northwestern to meet with Dr. John Trusheim. Before I get to my meeting with him, I do have to share that my dad told the nurse who was admitting me that she should read my blog, which made me absolutely mortified with embarrassment. She politely declined, but assured my dad that I do indeed seem like I was a very good writer.

Okay on to the important stuff.

Overall, my parents and I were deeply impressed by Doctor Trusheim. He is probably one of the top 5 smartest people I have ever met, and he definitely knows his stuff about brain tumors, as well as treatment for said tumors. He mentioned that the kind of brain tumor that I have (glioblastoma/oligodendroglioma), and indeed, brain tumors in general, tend to be more tentacle-like than other types of tumors. For example, most cancers tend to be a simple ball of cancer which, once surgically removed from the site, typically removes all of the cancer from the area. Brain tumors, on the other hand, tend to have little tentacles that branch out from the tumor itself into the brain tissue. Thus, after surgery, it is very likely that a little bit of cancer still exists in the brain, in tentacle form. This is why all of the neurosurgeons that operated on me were hoping that this tumor spread from my rectum, however unlikely – that would mean that they could safely say that they got all of the cancerous tissue out, because it wouldn’t have had tentacles. Apparently, brain surgeons can’t ever be sure that they removed 100% of a primary brain tumor after surgery, because in order to be sure, they would have to scrape into the brain tissue, which in effect, would make the patient mentally deficient afterwards. So, in essence, Dr. Trusheim verified that I will need to have both radiation and chemotherapy, which Dr. Galicich already had told me the week prior. Dr. Trusheim also told me that rectal surgery needs to be soon, and that radiation and chemotherapy need to start soon after that.

After my initial meeting with Dr. Trusheim, I immediately decided to switch my entire care to Abbott Northwestern, including the surgery on my rectum. Furthermore, I am now totally pissed off at HCMC on many different levels. First, I was on anti-seizure medication until Monday, when I ran out of the medication. I was told by the attending doctors at HCMC that I did not need to continue the meds after I finished the initial bottle. I mentioned this to Dr. Trusheim this morning, and he responded by immediately reinstating the prescription because the chance of having a seizure after brain surgery is 1 out of 3 cases, which no one bothered to tell me at HCMC (more on this in later).  Second, the doctors at HCMC also told me that I cannot drive a car for 2 weeks. Apparently as per Minnesota state law, anyone who has a seizure (which I did in March) cannot drive a car for 3 months following the incident. This was never shared with me at HCMC, which either means that they did not know, or did not think it was relevant in my case. Third, HCMC scheduled me with a consult with the Gastro-Intestinal surgeon (aka, the doctor performing the rectal surgery) there on May 7th. Dr. Trusheim said that we need to move much faster than that, as the rectal surgery needs to happen  so that we can start the radiation and chemotherapy treatment for my brain, as well as for my rectum, soon afterwards. He mentioned that ideally, my rectal surgery would have been performed 10 days after my brain surgery.

Returning to the seizure situation, soon after Dr. Trusheim told me that 1 out of 3 people recovering from brain surgery have seizures without proper medication, I started getting light headed. This was very similar to how I felt when I had a seizure at the gym, which started this entire journey. I still don’t know if this morning’s light headedness was actually due to the lack of medication, in that I was off my anti-seizure pills for more than 24 hours, or solely placebo effect (or perhaps more aptly put, lack of placebo effect). Either way I had to lie down immediately, and the doctor told me that I had to spend the rest of the day with my parents just in case I had another seizure (and obviously my anti-seizure pills had to be picked up from the pharmacy right away).

The good news is that, with Dr. Trusheim’s help, we were able to move very, very quickly at getting the requisite appointments scheduled. After meeting with him, it became apparent that he is able to get things done in a hurry. Before the day concluded, I had appointments with 1) the Gastro-Intestinal surgeon at Abbott who will be performing the surgery 2) a Geneticist (see below paragraph) and 3) the oncologist who will be in charge of the treatment of my rectal cancer after surgery.

After my appointment with Dr. Trusheim (and before I got light headed),  a geneticist named Dr. Sherrie Baldinger came in to get to know me a little bit. Dr. Trusheim invited her to meet me because before he figures out a plan for my treatment, he needs to understand if my many, many bouts of cancer have to do with a genetic disorder. Specifically, if I have a genetic disorder, he has to give me a certain type of radiation.  If not, it’s another type.

Dr. Baldinger was also very impressive, and also belongs on the list of top 5 smartest people I have ever met. After going through my medical history, and going through all of my family member’s history, she did indeed let me know that her initial impression is that I have a genetic disorder that predisposes me to a fuck ton of cancer (fuck ton is my wording, not the doctor’s). She has two theories – the first and most likely is called a bi-allelic disorder (apparently in the same family as Lynch Syndrome, for those who want to look it up on Wikipedia), in which I inherited two mutations from both my parents that made my DNA form in a weird way. The second, and less likely, is a disorder called Li-Fraumeni syndrome, in which I inherited some sort of mutation from my parents that inhibit the control of cell growth, which in turn, makes me more susceptible to cancer. The reason that bi-allelic is more likely than Li-Fraumeni is due to the types of cancer that I have had; apparently colon cancers and brain tumors are not typical results of Li-Fraumeni. I have another follow up appointment with her on Monday, April 29th to figure out definitively what type of genetic disorder I have.

Next steps: I meet with my new Gastro-Intestinal surgeon tomorrow. Her name is Dr. Amy Thorsen, and quite frankly, I am already impressed that she agreed to a meeting literally one day after my first appointment with Dr. Trusheim. I am assuming that the rectal surgery is going to be very, very soon now, perhaps even next week.

In my last post, I shared that I was very overwhelmed and freaking out about not having a plan. After today’s meeting with Dr. Trusheim, I feel 100% better. Things are moving much, much quicker, and quite frankly, the good doctor is going to be the person in charge of my treatment. What I mean by that is he is going to be in charge of the team that will be getting me well. Before I met with him, I felt like I was in charge of all of this; considering that I had no idea about anything I was doing, I was certainly in over my head. Now I get to be what I am supposed to be, which is the patient. A special shout out to my Aunt Mary and Uncle Rick, who called me on Monday night and gave me some great advice on some questions to ask Dr. Trusheim. Another shout out goes out to my 24 hour on call staff – my parents and my sister, because quite frankly, they are the best immediate family a person could ask for.

As always, many, many thanks go out to those who are thinking about me and sending good vibes my way as well. Honestly, I feel blessed to have so many people in my corner.

Onward and Upward,

Eddie

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5 Comments
  1. Rick Mullin permalink

    Eddie, Mary and I feel 100% better, too. It looks like you now have a real team looking after you. Way to go. Well played. I am very pleased to hear that Trusheim brought in a geneticist. Great move.

  2. Great news Eddie! I feel uncomfortable laughing while reading your blog about cancer, but you have a great way of telling a story !!! Praying for you all the time dude!! Glad you have a plan. I know that has to feel awesome.

  3. John Fedele permalink

    I really respect your mom’s ability to find the silver living . . . . looking forward to seeing you in a few weeks and, i don’t know if i speak for everyone else, but i’d be happy to read a post about anne hathaway.

  4. eddie you are one of a kind hope to see you soon love, andy

  5. Sister Katherine permalink

    Eddie, You are the man! Such spirit in the face of a tough situation, You make me smile while reading your blogs (but I feel a little like Heidi as I do) and you add courage to this planet. Love you much. PS. Sr. Mary Margaret and you could be at Abbott at the same time; she’s there now, since her heart surgery.. It happened too while you were at HCMC-‘member’ Sr. M Virginia was having knee replacement at time you were there two weeks ago? What’s going on with this togetherness? Gotta stop! Sister Kath

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