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Patriotic Cancer Patient

Hey folks,

You have probably noticed that I haven’t been posting as often in recent weeks. This is because, as I’ve said before, there hasn’t been much to report. However, there was a flurry of activity this week, so I have a lot to write about. Oh, don’t worry…I’ll make it as suspenseful and gripping as possible – as much as one can when writing about hospital visits and test results, anyways. I took some important tests Monday and Tuesday and got the results back today, so it was a relatively stressful week.

On Monday, I was at Abbott Northwestern for about four hours. The first three hours involved getting a PET CT scan of my body in order to see if my rectal cancer had grown or spread elsewhere. This test is administered by laying down on a table and having pictures taken of my insides. Before the test was administered, I had to drink a dye full of radioactive sugar (it sounds worse than it is – they basically poured some powder into a Chippewa Falls water bottle) which contrasts all high activity cells in a person’s body against all the normal cells. Specifically, this sugar is attracted to everything in the body that consumes a lot of energy at one time. For instance, if you just got done lifting weights and then took a PET scan, all your muscles would light up; I say “you” in this particular instance because lifting weights is something I try to avoid, as it gets in the way of ice cream consumption. More to the point, however, is that cancer cells consume a lot of energy very quickly, so they light up during this scan as well.

I also met with Dr. Monyak, my radiology oncologist, directly after the PET scan. If you remember, he is the nerdy doctor that probably got picked on a lot in high school. He basically mapped out how the radiation treatments for the rectum round (my term) will go. Specifically, it will be five and a half weeks of treatment, and I’ll come into the clinic five days a week, which is similar to the treatment I just finished for the brain. This round will probably start the week of July 15th,and they are zapping radiation to a larger surface area of the body this time. Thus, I will probably experience a little more fatigue, and possibly some skin irritation. I also may experience a little more difficulty keeping my weight up…as I’ve mentioned in the past, all the doctors and nurses were shocked that I didn’t lose any weight during my last round of chemo and radiation; however, none of my family members were surprised at all. The Mullin appetite is very well renowned.

On Tuesday, I was at Abbott Northwestern for another four hours. The first 3 hours involved getting an MRI scan  for both my brain and my ass. This was uneventful, and also very boring. On a somewhat more interesting note, after the MRI I met with Sherri Baldinger, my geneticist, regarding my Bi-Allelic Mismatch Repair Deficiency. As a refresher, this is what has caused all my instances of cancer. Sherri basically brought up things that I already knew, in that I cannot fight cancer cells as well as a normal person can. This is because I inherited two deleterious PMS2 genes from both my parents. Thus, this was a pretty boring meeting as well.

However, on Wednesday (today), I met with Dr. Trusheim, my brain oncologist, and Dr. Seng, my general oncologist (the older version of Don Draper). They gave me the results from both the PET and the MRI, and all the results are pretty fantastic. Specifically regarding my brain tumor, it’s completely gone. This means the surgery, radiation, and chemotherapy did their respective jobs well. Specifically regarding my ass tumor, it has not grown or spread to any other organ in my body. This means that I sort of lucked out, and that nothing in my ass got worse while I was being treated for my brain tumor. According to Dr. Seng, there is one inguinal lymph node near my rectum that lit up during my PET scan, which could mean that cancer has spread there. However, none of my doctors seemed to be too concerned about this, because it is probably just normal inflammation; Dr. Seng also said that even if it is cancerous, they can just zap it with radiation and remove it during my surgery.

Understandably, I am pretty excited about all the news, and have been doing a lot of fist pumping today. As it currently stands, I am 2-0 vs. cancer, and well on my way to being 4-0. Pardon my French, but cancer can go fuck itself. …I’m kind of feeling like this anteater right now:

Come at me Bro

Anyways, next week is a fairly busy week as well. On Monday, I will have a port placement surgery that will administer my chemotherapy over the following 5 and a half weeks. On Tuesday, I will be getting a biopsy of the inguinal lymph node to figure out exactly what is going on there. Finally, on Wednesday I’ll be getting another MRI for my doctors to have on file before round two of  chemotherapy and radiation begins. I have also received the green light from my doctors to stuff my face in order to get my calories up. This was never really an issue for me, but nice to get the confirmation.

Have a great 4th everyone!

Onward and upward,

Eddie

Finished with this Round of Radiation and Chemotherapy

Hey Folks,

I must say, six and a half weeks of treatment have gone by fairly quickly, and today was my last day of radiation and chemotherapy for round one. Treatment was originally supposed to end yesterday, but got extended because of a machine failure last week which prevented me from receiving radiation for a day. Besides fatigue, I didn’t have any major negative effects at all, which I am extremely happy about. From what I’ve been told, this is quite rare. For example, most people have to be put on steroids because they lose so much weight during the process. In contrast, I did not lose a single pound, which is a testament to the long held Mullin tradition of not having to be hungry to stuff our faces full of food. I was weighed every week, and every single time, I was met with a nurse’s complete shock that my weight did not decrease one iota. Frankly, I’m shocked that my weight didn’t go up because of the increase in hamburgers, ice cream, and egg McMuffins to my diet over the last six and a half weeks.

One interesting minor side effect that I have noticed is that I’m not hearing as well; I first noticed this two weeks ago, and it has steadily worsened. I asked Dr. Monyak – my radiation oncologist – about this hearing loss late last week, and he mentioned that this is a normal occurrence. What I found fascinating though, was the cause of this hearing loss. Specifically, part of the way that people hear is through something called an auditory tube, which goes from the ear through the sinuses. This tube vibrates whenever our ear encounters a noise, which in turn is how our brain registers sound. The radiation beams that have been entering my brain have dullied this vibration, and slowed it down. As a result, I can’t hear as well. Dr. Monyak said that the dulling of this tube also occurs when someone gets a bad cold, and that taking Sudafed should solve the problem for me. However, I am actually not going to take the Sudafed in order to see how long after the radiation it takes for my auditory tube to start vibrating normally; it will be like a junior high science experiment, minus the diorama and 14 page results paper.

On another note, now that I am done with round one of chemotherapy and radiation for my brain, my next round will start in one month for my rectum, probably July 15th. Thus, I will get a much welcomed month off. From what the nurse practitioners have told me, however, the “rectum round” (my term, not theirs) is going to be a pretty hardcore treatment regimen. The radiation will be hitting a large surface area of my body, which means I will probably experience more fatigue than I did in round one. The chemotherapy, called 5-flourouracil, will make me lose my hair and will be administered by a constant drip – which means I will have to get a portacath surgery, and I will to carry around a fanny pack of chemotherapy every where I go. This will last for 5 weeks, and then I will have another month off. Then I will have my rectum surgery, and then another month off. Finally, I’ll get the last round of chemotherapy and radiation, and then hopefully, I will be done!

Although all of this seems daunting at face value, it’s really not as bad as it sounds, and any side effects will be short lived. Plus, so far, I’ve noticed that there are a lot of side benefits of having cancer. For one, I can pretty much can get out of whatever the fuck I want to; i.e: “Oh sorry I can’t make your poetry slam competition tonight…I have cancer. “Also, I get a lot of attention having cancer, and as most people know, I LOVE being the center of attention, so there has been a lot of: “Oh, congratulations on your baby…I’d like to stop talking about it though, and tell you a fart joke instead. You have to laugh…I have cancer.” etc. etc. etc.

Finally, I want to give a huge shout out to my coworkers. They put on a fundraiser in my name for a cancer research fund that means a lot to my family (you can read more about it here). It was on June 17th, and it was a huge success; not only was I able to be the center of attention for an entire day, they raised over $10,000 dollars for the fund. I am honored and blessed to be working with people who would do that for someone as foul-mouthed and sarcastic as I am.

Onward and Upward,

Eddie

Late Post

Hey folks,

I usually post on Sundays, so sorry for being a little tardy. I actually considered not posting this week because there is not really much to report. However, I like to get attention…so I decided against it, and here we are.

In terms of how I’m feeling, my spirits are good, but man alive, I get tired really easily now. I usually go to bed around 8:30 during the week, and I also sleep pretty much all weekend. I used to dislike cranky old people, but they totally make sense to me now. To wit, on Sunday night, my neighbors were blasting horrible 90s house music (The 17 year old Liz Mullin would have been a fan, for sure) and I was literally thinking “Those damn kids! I can barely hear myself think!” To make the moment complete, all I would have needed was a cane to shake at them in one hand, and a glass of PediaLite in the other.

On a more serious note, one of my biggest mantras is that people shouldn’t get mad at the things they can’t control in life. For years, I have literally told this to every person I have ever worked with closely, as well as all of my close friends. This is partly because the kind of work I do can sometimes throw curve balls that are unexpected. Mostly, however, I say this because no one likes a complainer. Complaining never accomplishes anything, and the audience always gets tired of it very quickly. So, people shouldn’t get mad at the things they can’t control in life; I still stand by that statement.

However, I am going to break this long standing rule of mine very, very briefly. In all seriousness, the fatigue I feel from the radiation and chemotherapy is a huge pain in the ass (pun not intended). In the last two weeks, I have had to leave a family member’s wedding early (congrats to Joe and Sheila), and had to miss completely two friends’  going away parties as they move on to jobs in California (congrats to Heidi and to Josh). Furthermore, this weekend I will have to miss a dear friend”s bachelor party in Lake Tahoe (congrats to Jason.  Also, congrats to Kelsey, his fiancee and also one of my dearest friends). I absolutely hate this; I used to be a party machine, and I feel like cancer is locking me in a cage; all I can do socially now is go out to dinner, and even that completely wipes me out.

Okay that’s it. I am done complaining….I’ll start getting my energy back in about 2 weeks,which I can live with. All the complaining aside, I really must say too, that there is something a little gratifying about spending all weekend indoors, reading the newspaper and watching movies…part of me gets why my parents enjoy retirement so much. That said, I would just prefer that staying in all weekend be a choice, not a requirement.

On a lighter note, does everyone remember my friend Chad? I brought him up two posts ago as my partner in crime at senior prom. Over the weekend, he sent me an email that was absolutely EPIC. In his defense, he wrote it after spending the entire night with a family member in the hospital (his family member is doing okay now), so he was undoubtedly exhausted. However, he has given me permission to post my favorite part of this email below:

“I won’t ever forget the first time I took the city bus home with you after a day of school and I was just in awe of how cool you were – your house, your dads Acura, how nice you were, the fact you were half Irish..”

Chad is an awesome dude and one of my oldest friends; most of his missive is one buddy writing candidly to another. However, as one buddy writing candidly to another, I had to give him some crap…come on dude, my dad’s car?? For the record, I am not a person who throws stones from glass houses. As such, here is the person he thought was so cool freshman year of high school:

There is a lot going on in this photo…the bowl cut with blonde streaks, the non-smile which was clearly hiding braces, the greasy face, etc.  You can also barely make out the first stages of a pretty wicked uni-brow which followed me through most of college.

Anyways, I made a detour in those last 4 paragraphs….the image of Holden Caulfield yelling “Digression!” is starting to appear in front of me. To get back to the point of this blog, my last radiation and chemotherapy session (for this round) is on June 18th, which is about two weeks away. A nurse practitioner I spoke with last week said that I can start drinking – in moderation – about a week afterwards, as the chemotherapy will be safely out of my system by then. I have a feeling that her idea of moderation greatly differs from my idea of moderation, but still – I can’t wait; it will be like turning 21 all over again.

Onward and Upward,

Eddie

Week 3 of Radiation and Chemo

I am pretty much half way done with this round of chemotherapy and radiation. I am a little bit more fatigued this week, and starting to experience a little nausea, but these things are to be expected at this stage in the treatment.  That said, both are pretty manageable because A) I am addicted to coffee, which helps the fatigue, and B) I also have some good anti-nausea medication, which helps with getting sick. Just to be clear, my boss Sara was the one who first introduced me to the seedy underworld of coffee addiction. Other than that she has been a great manager, but the day that I interviewed with her, in the coffee shop near the office 3.5 years ago, is a day that will live in organic light roast infamy.

I don’t have much official to report this week, besides a brief meeting on Wednesday with Dr. Monyak, my Radiation Oncologist. He mentioned that I, at that point on May 22nd, had completed 12 sessions, which I already knew. He did explain, however, that these first 12 sessions had a strong dose of radiation that zapped – my term, not the doctor’s – a large portion of the right side of my brain. The next 11 sessions will be the exact same (essentially, this is my first month of treatment). The last two and a half weeks will be a lower dose of radiation, but more localized to where my tumor used to be. Unfortunately, the symptoms won’t dissipate until after radiation and chemo are through, but again, coffee and pills are powerful cures.

As a side note, Dr. Monyak is my favorite doctor that I’ve met so far through this process…he is a total nerd and it is absolutely clear to me that the football jocks used to just wail on him in high school. Do you remember that small kid that was a part of the A/V club? That’s him. I picture him getting home from the clinic every day, taking off his hospital jacket, shirt and tie, putting on a Star Trek t-shirt, and playing World of Warcraft all night. But hey, he is a testament to the phrase “geeks will rule the world someday”. He is a successful doctor at a prestigious hospital. So kids…let this be a lesson: do your homework, embrace your inner nerd, and tell the football jocks to fuck off because you are going to help cure cancer one day.

On a final note, with no segue from the previous paragraph, I typically share the waiting room in the clinic with the same people every day. This is  despite the erratic schedule I was given, and I have no idea if the doctors planned it this way or not. These other patients, though, make me look forward to going to the clinic every day, oddly enough. I don’t know any of their names, or anything about them. In fact, I’ve barely even spoken to these people; for the most part we just smile and nod to each other…once in a while we will engage in small talk about the weather or whatever. However, I have definitely started to feel a bond with these people, and find a strange comfort in seeing them day in/day out (a friend of mine told me that the movie 50/50 has a similar motif – I’ll be honest, I’ve never seen the movie, and probably never will, but it sounds like the writers were spot on).

I cannot yet explain why I feel this way about total strangers, but I think it has to do with the fact that these are people who are going through the same thing that I am. I’d like to believe that these people – who I probably have nothing in common with except for the fact that we share the same illness –  are thinking the same things that I think about, and feeling the same feelings that I do. These are the things that I don’t share with any one else, and never will (some things I just want to keep to myself ). Like I said, I haven’t fully wrapped my head around it yet, but there is some sort of catharsis there, at least for me. I have no idea if these people feel the same way or not – in fact they are probably totally annoyed that my dad and I eat all the candy out of the candy jar at the front desk – but I like seeing them every day, regardless.

On that note, have a great long weekend everyone!

Onward and upward,

Eddie

Week 2 is in the Books

Well, week 2 of radiation and chemotherapy is a wrap…just one more week until I only have three more weeks of treatment. Woot woot! In all seriousness, I’m already almost halfway through treatment; the countdown to cocktail hour is 21 more treatments…I can begrudgingly live with that. On a positive note, I am not yet experiencing many of the negative side effects of radiation/chemo yet…no nausea or mouth sores or anything like that. Up until the tail end of this week, I wasn’t experiencing any major fatigue either. However, Thursday’s radiation hit me like a ton of bricks. I had to take a nap and went to bed at 8:30 at night. I don’t think I’ve done that since I was in underoos. Interestingly enough, the fatigue comes and goes. Since the first wave hit, I was expecting to be tired all the time. However, Friday I was relatively fine. But Saturday, I was exhausted all day.

One thing I forgot to mention in my last post is that I have a new treatment plan. I met with Dr. Seng last week, who is my oncologist for the rectal cancer. Dr. Seng, by the way, looks a lot like an older Jon Hamm…I keep picturing him smoking cigarettes and drinking martinis during his lunch hour, Don Draper style. Anyways, he said that after I am done with the brain tumor treatment, that we will wait about a month for my body to recover. Then, we are going to start radiation and chemotherapy in my rectum for 6 weeks. After that, we will wait another month, and I will have my rectal surgery. Another month will go by for recovery, and finally I will go through the last 6 week portion of my radiation and chemotherapy. According to Dr. Seng, the results are better for rectal cancer if I have treatment both before and after the surgery; there is  less likelihood of recurrence or metastasizing after the fact. As I have written about before, I am a big fan of laying out a plan, so having this path laid out in front of me feels quite good; I now have a 5 step plan to remission:

1) Brain surgery, check;

2) brain treatment, in process;

3) rectal treatment 1, TBD;

4) Rectal surgery, TBD;

5) Rectal treatment 2, TBD.

I will be making a wall poster of this, by the way. With check boxes on the left hand side.

I also received a very interesting call from the geneticist, Sherrie Baldinger this past week. She called me to let me know that she found the culprit of my genetic disorder, Bi-Allelic Mismatch Repair Deficiency. The lab report is back, and the people who I envision look like Dexter Morgan have found 2 alterations on my PMS2 gene. For the record, this gene has an odd name, and has nothing to do with the PMS that women experience from time to time. Anyways, this is fairly definitive proof that I have Bi-Allelic, but the true test is if my parents and my sister have the same alteration. As a matter of fact, the lab will pay for the costs to get their lab work done in order to find this out – the cynic in me believes that the lab is being this generous because someone is going to get a paper published based on the results, but hey…free stuff is always a good thing. Just to be clear, it does not mean that my family has the same disorder if it is found that they have the alteration on their PMS2 genes As I understand it, because they have lived this long without an incidence of cancer is probably definitive proof that they in fact do not have my disorder. The presence of the alteration on the PMS2 (it still feels weird to call it that) simply means that it is a genetic disorder. Specifically, my parents’ genes combined in a weird way when they asked the stork to drop off a baby at their house.

Before I close, I want to end this post on a relatively more serious note. Since I was diagnosed with this latest bout of cancer, a lot of people have come up to me and said ” I don’t know how you do it” or “I can’t even imagine,” or something else along those lines. Although I appreciate the well wishes, honestly, I don’t think that I am doing anything that amazing….these people shouldn’t either. To date, I haven’t been able adequately explain this sentiment to those who approach me this way. Luckily, I am friends with a true wordsmith named Nora. She explains everything that I’ve always wanted to say on the subject beautifully here, in a blog post entitled “About Strength”. We all have problems; my problem is that I get cancer a fuck ton, but this is no better or worse than any other person’s challenges, just different. The only thing that I do which is truly amazing is using cancer to justify eating two helpings of ice cream after dinner; I’ve gotten pretty good at that, actually.

As an aside before I end, I have a funny story to share about Nora. We became friends in high school, and on prom night senior year, a large group of us got a block of rooms at a nearby hotel. I don’t remember all the details from 12 years ago, but I do remember that the two last people standing that night were me and my friend Chad, and we spent the last part of the night smoking cigarettes and drinking what I’m sure was a horrible mixture of alcohol (no judgements on either of those actions please…remember, I was a stupid teenager). The next thing I know, it’s 8AM and I am awoken to Nora repeatedly slapping me in the face…apparently at some point in the night, I decided to use her prom dress as a blanket. The last time she saw it, it was neatly hung up in the hotel room’s closet. Luckily, this story has a happy ending. First, Nora eventually forgave me and we are still friends. Second, Nora recently shared with me that she still has the dress, and it is hung up in a storage closet, just waiting to be worn by her future daughter at her prom. That said, now she is going to be mad at me again for sharing that last piece of information. The more things change, the more things stay the same.

Onward and upward,

Eddie

Radiation and Chemo Began This Week

Hi Everyone,

I feel the need to start off this post with some very, very sad news. On Monday, May 6th my neuro-oncologist confirmed my deepest fear: I will be unable to drink alcohol until my radiation and chemotherapy treatments are over. To provide some background, I have not had a sip of alcohol since my friends Kelsey and Jason had a house warming party on April 6th, and the treatments aren’t over until June 18th. This has already been the longest I’ve gone without a cocktail since high school, and I’ll be honest, I miss booze a lot…As the great Dean Martin once said, “I feel sorry for people who don’t drink. They wake up in the morning and that’s the best they’re going to feel all day.” To Mr. Martin’s point, this will truly be a lot of summertime sobriety to start off the season, and it is very unwelcome. That said, once the treatments are over, there will be a huge scotch infused celebration which you will all be invited to. Ironically, my goal for that night will be to get hospitalized (just kidding mom).

On a serious note, I did start chemotherapy and radiation on Tuesday, May 7th and to be honest, the first week was a breeze. The only frustrating thing about the treatments is that there is no set schedule for me to get the radiation. One day my appointment could be at 7:40AM, the next it’s at 2:20PM, and the next it’s at 5:40PM; Thus, so much for getting into a routine, but it’s only for six weeks so it shouldn’t be that much of a disruption.

Before I go into the details of treatment, I do want to share a very amusing comment one of my employees made to me this week – to protect his identity, let’s call him “Brian McCrasken”. I was having a conversation with “Brian” at work right before I was about to leave for the clinic for my first treatment on Tuesday, and the six weeks of radiation and chemotherapy came up at the tail end of our conversation. Now, he probably meant to ask the question “which one is supposed to be the most mild?” or something along those lines. However, the way he said it was, and I quote “Which one are you looking forward to the most?” as if we were talking about two different books that were on my summer reading list. Everyone within ear shot, including us, started laughing immediately.

Regarding my treatment, the radiation piece of it is pretty easy, actually. I go to a special clinic at Abbott 5 days a week. After I check in to the clinic, the nurses take me back to a big room with a huge machine connected to a bed. I lie down on the bed, and they a put a plastic mask over my face and fasten it to the bed; this is to keep my head from moving around during the treatment. The machine then automatically positions itself into the place it needs to radiate, and a whirring sound begins – this is presumably when the radiation is active. Here is a picture right after Thursday’s treatment:

New Image

After about 6 minutes, it’s over. I almost wish it were more exciting, because it would make for a more interesting post, but that’s about it. As long as there is no extended wait in the waiting area (sometimes the clinic gets backlogged), I’m at the clinic for  no more than 20 minutes.

The chemotherapy portion of the treatment is pretty mild as well. I’ve had to have chemotherapy 2 other times in my life, and this stint is  by far is the easiest. The particular chemo I am taking is called Temodar, and I take it in pill form. Dr. Trusheim also prescribed for me an anti-nausea pill, and an antibiotic. I take the anti-nausea and Temodar right before I go to bed, and I take the antibiotic 3 times a week.  Granted, this was my first week, but as far as I can tell, it’s totally a piece of cake compared to when I was 5 and 17.

I may be eating these words in a couple of weeks, but so far, I have not felt any of the really negative side effects, save for some very mild fatigue beginning this weekend. All the doctors and nurses have told me that I can expect for this to increase over time, and that I should also expect to experience nausea at some point as well. As an aside, one of the side effects of chemotherapy is that it depresses my immune system. Thus, I will be more susceptible to cold and flu viruses for the next few weeks (that’s why the doctor prescribed me an antibiotic). As a result, I am going to be avoiding people who are sick like I do weird people on the bus; no offense, but if you are under the weather, please steer clear of me for the next few weeks…we can hug it out in July.

The only downside of treatment so far  is that I did start to feel the onset of chemo brain pretty much immediately this week. I experienced this before when I was going through chemo at age 17, but it happened much later in the process. I honestly don’t know if this is something that is psychosomatic or it is an actual result of the chemotherapy, but I have noticed that I am a little more forgetful and have a tendency to ramble a bit now that I started treatment. That said, I have also noticed an improvement over the last few days, so hopefully it will be short lived.

I’ve also felt very popular lately, which is a testament to the support I am getting from friends, family, and colleagues. As an example, at Mother’s Day brunch today, 2 people I have never met before came up to me on separate occasions and said “Hi Eddie, oh my gosh, I have been thinking about you so much lately.” This has been happening a lot. I know it comes from a very good place, and they mean very well; and I obviously I respond with a polite thank you. But to be honest, when this happens I’m really thinking “Who the hell are you, and man alive I hope you have your clothes on when you are thinking about me.” In all seriousness, I really do appreciate all the support, from friends and strangers alike.

Before I close, a huge shout out to my friend Alli for letting me know that May is brain cancer awareness month!

Onward and upward,

Eddie

Busy Week

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,

Eddie