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Busy Week

May 5, 2013

Hey folks,

Sorry for not posting in a while, but this was a very busy week – I am beginning to realize that trying to juggle hospital appointments (which are obviously a hassle) and work (which is where I would rather be) is fairly difficult. Mostly because every time I meet with a doctor, they want to set up another follow up appointment or test that same day or the day following. I certainly can’t tell them no, but this throws off my entire schedule. I like to be a man of routine, so this is going to take some getting used to.

In any case, this was also a very busy week for me at the hospital; probably the most appointments I’ve had to date in one 5 day period. In the interest of brevity, I am only going to list the more important meetings…the other appointments were simply consults or uninteresting tests.

On Monday, I got the sutures out of the scar on my head, which, for the most part was uneventful, but I look a little more normal now, thankfully. More important, I met with Sheryl Baldinger, the geneticist who is trying to figure out why I keep getting cancer. Holy buckets, she has to be a certified genius because she is insanely smart. She also reminded me of my 9th grade science teacher Mrs. Peterson, which sort of made me not like her to begin with – Mrs. Peterson was the only teacher that gave me less than a B in high school; clearly I have not forgiven her for it (I did begin to like Mrs. Baldinger later on in the meeting though; stay tuned). During the meeting, she showed me and my parents about 50 slides of different chromosomes, and went over the disorder she thinks I have in a little more detail. Specifically, she thinks I have something called Bi-Allelic Mismatch Repair Deficiency. Honestly, she had to go over the details of this syndrome with me about 3 times before I had somewhat of a handle on it, so I apologize if I don’t explain it that well online. Basically, if you remember genetics from high school biology, everyone inherits genes from both of their parents. Some of these genes are dominant, and some are recessive, and the mix of both will determine everything about you, i.e. what color hair you have, if you have a unibrow or not, etc. As Mrs. Baldinger explained it to me, one of these pairs of genes that we receive from both parents help us fight mutations in our DNA. These genes act as repair mechanisms for when one piece of our DNA that we get from one parent matches up with the wrong partner DNA from our other parent – and this happens a lot, surprisingly. When this does happen, our mutation fighting genes help to fix our genetic code so that the rest of our DNA works and matches up like it’s supposed to.

Apparently, I inherited two altered/recessive mutation fighting genes from both my parents, so my ability to repair these mismatches in the DNA sequence is missing. Thus, I am more susceptible to cancer. Apparently, less than 1% of the human population get this deficiency…I’ll be honest, rather than inheriting two altered genes, I wish I inherited a bunch of money from my parents so I could be a part of the upper 1% instead; but then I would have a stupid name like “Tad” or “Brock”, so you have to take the good with the bad, I suppose. In all seriousness, the rareness of this syndrome is a good thing, because in all likelihood, no one else in my family has it, and they have very little chance of passing it on to any of their children. My sister would be the most likely other person to get this disease, and has a 1 in 4 chance of sharing this disorder with me. However, considering that she has never exhibited any type of cancer up to now (she would hate me if I told everybody how old she is, but she is older than me…I’ll leave it at that), she most likely doesn’t have it. She may carry the altered gene, but the only way she could pass it on is if her husband had it too, which would be very unlikely.

In fact, fewer than 100 cases have been reported of this disorder. Keep in mind that these are only the reported cases; this genetic repair deficiency was first discovered in 1991 so there are probably many other people out there affected that don’t know they have this syndrome.

Mrs. Baldinger then sent me off to take a couple of blood samples to send to the lab. One to check for definitive proof that I have Bi-Allelic Mismatch Repair Deficiency, and one for a possible other culprit, Li-Fraumeni syndrome. I am not going to go into much detail about the latter, because that test already came back, and I don’t have it. As an aside, it was at this moment that I kind of fell in love with Mrs. Baldinger, despite her similarity to a teacher who totally and completely wronged me in my past. Before she sent me off to get my blood drawn, she said that she was going to call the lab every day until we get the results on the Bi-Allelic test back because, and I quote “I don’t want them to dick around with this shit”. I’ll be honest, I’ve never been more attracted to an older woman in my entire life.

On Tuesday, I met with Dr. Monyak, who is the radiation oncologist that will be running the show on my radiation treatments. Much like the genetics test, this also turned out to be a very interesting meeting. He went over the characteristics of my tumor, as well as what radiation and chemotherapy treatments will be like for the next 6 weeks. according to the doctor, the brain tumor I have is not a tumor of the nerve cells in the brain, but of the cells that support the nerve cells, which is why I was asymptomatic for so long. As I’ve mentioned before, I have a mixed tumor, between glioblastoma and oligodendroglioma. The good news is that the presence of “oligo” makes the tumor more susceptible to radiation and chemo treatments. The bad news is that glioblastoma is a pretty nasty type of tumor; but nothing I can’t handle.

Dr. Monyak also explained that radiation treatments are measured in “greys”, and that I will be receiving 2 greys per day, 5 days a week, for 6 weeks (to start). In conjunction, I will also be taking chemotherapy in pill form. The type of chemo is called Temador, and helps to accomplish 2 things: First, it helps to kill the cancer cells, and second, makes the cancer cells more susceptible to the radiation. He also explained that I won’t feel a thing during the procedure at all, and that I will be in the radiation clinic for about 30 minutes, in total. Dr. Monyak continued on to say that I’ll be on the bed for a total of 10 minutes, and the radiation will be on for a total of 3 minutes. This, to me, does not sound that bad at all. I remember when I was 5 and had to get chemotherapy treatments, I was in the hospital for a good portion of the day, so 30 minutes is going to be a cake walk. The good doctor also went on to describe some of the side effects that I may experience during these treatments. Specifically, the most common complaints are those of fatigue, nausea, and constipation. The good news is that these effects are cumulative, so I most likely won’t be experiencing these until later on in the treatments. I’ll also lose my hair in the effected area, so I’ll probably start shaving my head pretty soon. Anyways, at the end of the meeting, Dr. Monyak gave me a little booklet hilariously titled “Radiation Therapy and You”. I’m not kidding, that’s the actual name…and there is an inexplicable picture of a lighthouse on the cover for some reason.

On Wednesday, among some other tests, I had a mask mold done of my face, and then did a dry run of the radiation treatment. I have to wear a mask during radiation, I think, so I won’t move my head around while they shoot radiation into my brain. The dry run was done for the doctors and nurses to see if I would flip out during the actual procedure, and for me to experience what it would be like. It was fairly interesting…I lied down on the bed, and the nurses put this plastic mold over my face that sort of looked like a fish net. They then began pushing the plastic to fit my head, and then screwed it into the bed so I couldn’t move at all. I imagine that this would freak a lot of people out, which is why they do a dry run to start. They then put me into the machine, and it was a lot like getting an MRI; granted, this was with the machine in the off setting.

The rest of the meetings and appointments I had were pretty boring; a lot of consults, MRI’s, and CT scans mainly. The only other thing I want to mention is that I had an opportunity to reconnect with an old high school friend of mine who I had sort of lost touch with over the years. Her husband was diagnosed with pretty much the same exact brain tumor I have about a year ago, so we got together for dinner this week to discuss…well, cancer, I guess. Definitely check their blogs out…they are the ones that gave me the idea to blog myself. HOWEVER, I will say that both of these people are much, much wittier than I am, and their blogs are much cooler looking. I am insanely jealous of them for these reasons, so certainly peruse their blogs, but you have to like mine better…That’s a rule.

Anyways, I start radiation and chemo on Tuesday of next week, and I’m sort of looking forward to it…hopefully the endless meetings with doctors will cease and I can sort of get into an everyday routine where I am at the hospital, then work, or vice versa. A lot of people have been asking me how I’m feeling; For the most part, I am really good. I’ve noticed that I get tired more easily than I used to, but the most annoying thing so far is that my scar is really itchy. I seriously want to claw at it like a bear, but I can’t for the time being. Other than that, I am doing well.

Onward and Upward,


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  1. We still have the brain “diagram” Dr. Monyak drew for us in the same meeting. It basically looks like a ball of play-dough, with cool lasers shooting through it.

    The nurses at the radiation clinic are awesome. Dress nice, and they’ll compliment you a lot. I received the award for “best dressed patient” when I went, so that’s something to strive for.

    Also, our masks will make an awesome Halloween costume someday. We have mine proudly displayed in the dining room, so be sure to ask and keep yours when you’re done!

  2. Mimi permalink

    Mimi and John read every word. We are really impressed with your approach to your situation and your willingness to share, as well as your writing skills.

    Onward and re ally upward!!!

  3. Onward and OnWisconsin, Ed!

  4. eddie, matthew here. (don’t let my “alias” fool you.)

    ever since i heard about your latest trials, you’ve been on mind more than you know. yesterday i saw auntie “m” and she tipped me off to this here blog. you’ve done a masterful job, very impressive. my hope is that one day soon you can write about all of it in the very past tense.

    korey certainly sends his love also.

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