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Rectal Cancer Versus Brain Cancer

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

A Plan Has Been Set Into Motion (Sort of)

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

Back in Action

First of all, I would like to state for the record that this blog has ruined me. I have had to resist so many urges to bring this site up and write about what I ate for breakfast, how good this one television show is, or how much I hate Justin Beiber. Blogging is like Twitter for people who are extra wordy and in general, like to pontificate.  This is going to be a constant struggle for me.

On to the important stuff: This afternoon at 1PM, I went in to HCMC to meet with Dr. Galicich  regarding the biopsy of my brain tumor. He was in surgery all morning, and I could tell that he was exhausted. That said, he gave me a lot of information which sort of made me regret getting a C in biology in college. I’ll do my best to regurgitate what he told me in a tangible way.

As a bit of background, this biopsy was important because it would tell us if it’s a brain tumor or if it spread from the tumor from my rectum, which will indicate how we treat it. Dr. Galicich didn’t go into many pleasantries, and pretty much started off the conversation by telling me that this was a primary brain tumor, meaning that it did not spread from anywhere else.  Furthermore, it wasn’t a “normal” tumor, and was relatively unique in that it contained properties of two different kinds of brain tumors. The first is called oligodendroglioma (the name of my first girlfriend in junior high, weird), which is apparently very susceptible to chemotherapy and responds well to radiation. The second is called glioblastoma, which apparently is the most aggressive form of brain tumor, but also the most common. Dr. Galicich told me that the oligodendroglioma presence is a very, very good thing because it makes it much more likely that radiation and chemotherapy treatment will go well.

Okay so here is where I got lost a little bit; he also told me that they are waiting on one more result of the lab work, and it has to do with a deletion of a chromosome on the tumor itself (anyone who is a science nerd that can provide a 5th grade explanation of this, I would appreciate it). They are currently testing if the chromosome 1P/19Q is present or deleted on the tumor. Apparently,  if it is deleted, that will also further enhance the success of my treatment.

In any case, it is clear now that this is a primary brain tumor, and that I will have to have both radiation and chemotherapy for it. This was actually not all that surprising, as the oncologists at HCMC made it pretty clear that the rectal cancer moving up to the brain would be very, very rare without also infecting my lungs and liver, which…thankfully, are free of cancer.

So what are the next steps? Dr. Galicich suggested I see a Doctor by the name of John Trusheim, who apparently is one of the best neurology oncologists in the country; I have an appointment with him on April 24th at Abbott Northwestern. Dr. Galicich also said that people start chemotherapy and radiation well after 2 weeks have passed from brain surgery. That said, the tumor in my rectum poses a problem. That has to be removed surgically, and I am assuming that this will have to happen fairly soon, which will also complicate the treatment date for the brain tumor.

I’ll be honest, I am a little frustrated. I feel like I am fighting a war on two fronts…one in my brain and one in my butt. I need to have surgery on my butt, but I also need to get treatment going for the removed brain tumor. It’s all a little overwhelming. That said, I am working with very good doctors who can help me get this all figured out. As I’ve said before, I am the kind of person who always like to have a plan, and right now, there are a lot of proverbial balls in the air, but we will get it all sorted out soon.

Also, I have to figure out where I am going to get all the cancer treatment. In all honestly, HCMC has been absolutely wonderful. The doctors and nurses have been smart and kind. They also know my case fairly well at this point, and know that I have rectal cancer and as well. That said, Dr. Galicich made it very clear that I would be best off regarding the chemo/radiation for the brain tumor with Dr. John Trusheim at Abbott. I’d rather do all the treatment all in one place, but moving everything to Abbott introduces it’s own challenges. For example, I don’t know any of the oncologists there, whereas I know and trust 3 of the main oncologists at HCMC, all of whom have made me feel like a priority. Moreover, at this point, Abbott does not know that I have rectal cancer as well, which I am sure will be a process in getting all the information moved from HCMC to the doctors at Abbott. Finally, HCMC is super convenient for me. It’s two blocks away from my condo, so I can get there from home or work with relative ease. That said, if Abbott is where I’ll best be treated, clearly the leg work will be worth it.

On a side note, I have started back at work this week – working from home for the time being. This has been absolutely awesome; it’s been such a relief to focus on issues and problems that can actually be solved within a relatively short time frame. Oddly enough, these work problems also don’t seem as stressful as they used to be, which makes me want more and more of them.

As another aside, I have also decided that once this whole cancer thing is over and done with, I am going on a 3 week vacation to Europe. Destinations currently being considered are Rome, Vienna, Berlin, Copenhagen, and Oslo. I may also end the trip in Vegas for the hell of it too.

All in all, I am doing very well. As of today, it’s been a week since my surgery, and I feel pretty good, all things considered. I’m not in a lot of pain, and have been able to spend some time with friends and family. I am really looking forward to the weekend too – Some of my close friends from college are coming to visit from various parts of the US, so it will be fun to BS with them like we usually do.

I promise not to blog about hating Justin Beiber – That was more for me than for you folks…I gotta keep myself honest.

Onward and Upward,

Eddie

The Surgery and Hospital Stay

Hi Everyone,

Well, I was supposed put this post up last night, but with the horrific events in Boston yesterday, it didn’t feel right to. Quite frankly, it doesn’t right now either. We are experiencing a national tragedy, and the people of Boston are going through it first hand. Solidarity to my friends, family and Oracle colleagues in the area…we all are standing with you.

THE SURGERY AND HOSPITAL STAY

If you have ever stayed overnight in a hospital before, you will know that it is impossible to get a good night’s sleep. Machines randomly start beeping, nurses come in roughly every 3 hours to check your vitals, and if you are anything like me, the thought of thousands of other sick people previously laying in the bed you are currently in is a little off putting. The night before my surgery, Wednesday, April 10th, I pretty much stayed up all night, for all the aforementioned reasons, but also because I was a little bit more stressed out than I thought I was going to be. Besides, the surgery preparation was scheduled to begin at 5:30AM, so I figured, why not…I’ll pretty much be sleeping all day after the surgery anyways.

True to form, one of the neurosurgeons came into my room at about 5AM to get the preparation started. She started shaving little spots off of my hair and connecting little plastic dots to them. They were going to be doing another MRI of my head directly before surgery, and these dots apparently make it much better to see the actual size, shape and location of the tumor. Basically, they just wanted the most up to date information on my tumor before they opened my head. I made no complaints. Apparently, the MRI of my head taken while I was at the ER 2 weeks prior was only a “general” one. This let them know that a tumor was there. The one they were going to be taking now, though, was more specific, and will give them exact placement of the tumor, the actual shape, etc.

My parents and sister arrived during this time as well.

After that, I was supposed to be brought down to the Radiology lab for the MRI at about 6AM. However, that was delayed. A lot. For those of you who don’t live in Minnesota, there was a huge snow storm that started Wednesday morning that went all night and pretty much all morning on Thursday, and that caused a lot of delays for people getting to the clinic, and all of the subsequent schedules. So I was pretty much stuck in my hospital bed until about 8PM until someone came and got me for the MRI. This, I’ll be honest, was agonizing. Not only was I bored, but the elongated time made me wish I had tried sleeping the night before, because I was officially exhausted. Thankfully, things moved pretty quickly after that. I was brought down to the MRI room, where they put me in the tube and took pictures of my head. Then I was brought down to the surgery preparation area. Dr. Walt Galicich was there waiting for me, said hi, and introduced himself to my family. Like I said before, he is a pretty likable guy, and my parents and my sister loved him right away. Then I had to sign some consent forms, talked the nurses, and then had a long conversation with the Anesthesiologists. They asked me a lot of questions like “Do you have any fake teeth?” and “Have you had any alcohol to drink in the past 24 hours?, and “When was the last time you ate?”…all fairly standard, but I should have asked about the teeth question, because now I am curious about that one. After that, the main anesthesiologist told me that they would be putting me under and then moving me into surgical room. I didn’t ask, but now thinking about it, I’m curious as to why. During any other surgery I have ever had, I’ve always been injected with the anesthesia in the room itself, just before surgery. That being said, I’ve never had brain surgery before. So I am thinking that they injected me beforehand because I would be in a weird position during the procedure (probably sitting up), with a vice on my head keeping me from twitching, which is why they put me under early…basically so they could place me in the positions they wanted me in right away. So I gave some hugs and kisses to my family, and then quickly went under. I can’t say for sure, but I think this was about 9AM.

The surgery took about 5 hours long. By all accounts, it was a huge success, with no complications. Apparently they were done with everything at about 2-3PM, and went to go tell my family all of the results. I was still out of it at the time, but my sister explained to me that she could see them walking down the hallway toward them after the surgery. Doctor Galicich was leading the way, with about 5 or 6 from his team following him. My sister said that they were walking so much swagger, that she could tell it went well. I sort of like to think of that walk looking a little like this: http://halloftheblackdragon.com/reel/wp-content/uploads/2011/09/entourage-swagger.jpg

True to form, Dr. Galicich said the surgery went well. The tumor that they removed was actually the size of a golf ball, so a little bit bigger than what the original MRI 2 weeks ago showed. They also believed that they got all of it, and that they did not affect any of the brain tissue (aka, I would still be the same old Eddie Mullin you are all used to…sorry folks). At this point, I was sort of in and out of consciousness, and honestly, in quite a bit of pain. The post-op nurses that were helping me after surgery were great, and did everything they could to make me comfortable. Once I was stable enough to travel, they brought me down to the Intensive Care Unit, where I was to spend my first night after surgery.

Once down there, I was again, pretty in and out of it. I do remember Dr. Galicich and his team coming down to see me, and asked me some questions. He asked me to grab and pull his fingers (I wish I was lucid enough at the time to make a fart sound while doing so, as that would have been pretty funny). He then grabbed my feet and asked me to push away, then toward him. Finally, he asked me to repeat some tongue twisters for him. I did all of this just fine, which indicates that I did not lose any functionality in my brain as a result of the surgery.

I’ll be honest, my night in the ICU was pretty excruciating, despite the wonderful nurses I had assigned to me. I was in a lot of pain, and was constantly asking the nurses for pain medication. Furthermore, I quickly learned that the ICU in any hospital is never quiet…there is always some beeping, alarms, “Code Blue” announcements over the hallway speaker, etc. There was one patient somewhere in the ICU who was not doing very well, and I constantly heard people running in and out of his/her room. Sometimes I would ask my nurses about it when they would come into my room, and they responded every single time with “We are still working on it”, which made me believe that this patient was in dire straights.

At about 6AM (This is on Friday, April 12th), someone from the neurosurgery team came down to check on me. He asked me how I was feeling, how the pain was, etc. He asked me if I wanted to up the pain medication (I was on a regiment of Oxycodone every 6 hours, and Dilauded every hour, as needed). Although I wanted to say yes, I told him no because I had a deep fear of getting addicted to these drugs. Dilauded, especially, was absolutely awesome, and came with a bit of a euphoric feeling, which kind of scared me how much I liked it. The pain actually got much more manageable during the day on Friday, so I’m glad I said no.

Then at 8AM, my nurse began removing some of the stuff I had connected to me the first night. I was shocked at the things I had all over my body…some of which I didn’t even realize were there until she removed them. I had 2 IVs removed from my arms (with one remaining), a catheter removed (gross, sorry), and this other tube that was stuck in my arm that collected blood for blood samples. This was bizarre. I watched her remove it, and there was literally an 8 inch plastic tube that came out of my vein. It was pretty spectacular. She left in a drain that was connected to my brain which helped to get rid of all of the unnecessary extra goup that was caused by the surgery (gross again, sorry), and said that the doctors will be removing it the next day (Saturday).

The nurse then brought me back to the radiology lab, for a follow up MRI. This was to indicate for sure whether or not the neurosurgery team got all of the tumor out during the procedure the day before. This was uneventful. About an hour later, the neurosurgery team, less Dr. Galicich, came in to meet with me. In his place was Dr. Bergman, who is a peer of Dr. Galicich’s as one of the lead surgeons at HCMC. I had never met him before, but apparently he was also assisting with the surgery the day before. He mentioned that the MRI looked good, and that they can safely say that they removed 99.2% of the tumor. He couldn’t say for sure 100% yet because there was still some swelling in my brain (which is completely normal), but everything indicates that they got all of the cancer out. I will probably need to have another MRI done once all the swelling goes down, but things at this point are looking good. He also mentioned that they are waiting on the biopsy results of the tumor, and should expect that sometime the following week.  This biopsy result will indicate what kind of tumor it is, and how my cancer treatment will follow.

Soon after this, I was moved from the ICU to the main inpatient recovery center. I’ll be honest folks, the next few days were pretty uneventful. The rest of Friday I basically just watched Netflix and slept, and Saturday and Sunday I had some visitors, received A LOT of gift baskets (thank you to everyone). I was also visited by 2 people from the physical and mental treatment team at HCMC. the mental treatment person asked me some memory questions, which I did just fine with. the physical treatment person asked me to go on a walk with her, which I again, did just fine with (I was actually walking around pretty well starting on Friday). I was visited by the neurosurgery team every morning, but they were primarily checking in, and couldn’t really tell me anything of note until we got the biopsy results back.

At this point, I have a couple pretty badass scars on the right side of my head. I’m a little irked because a few days before my surgery, I got an absolutely ridiculous hair cut, full with stars, thunder bolts, a mohawk, and the motion W for the University of Wisconsin. At that point, I figured that they were going to shave my entire head, so I might as well do something funny before hand. Well, after they put me to sleep on the day of surgery, they only shaved the right side of my head, leaving the rest! Quite frankly, I look absolutely ridiculous right now. What’s worse, I can’t do anything about it until April 29th, when I get my sutures out.

On Monday (April 15th),  I was again visited by the neurosurgery team, who gave me the great news that I would be leaving the hospital that day. The biopsy results were not back yet, but they would contact me when they were. Then they asked me if I had any questions. My first was when can I drink alcohol. They told me 6 weeks, which was pretty demoralizing, but they told me this is because my brain is still healing and that they don’t want anything getting in the way of that process. Doctors have to be soooooo smart all the time…I did tell them that I will begrudgingly agree to this, but that Memorial Day weekend this year is going to be EPIC. My next question was when I can drive. They said that I shouldn’t drive a car for about 2 weeks, which is not that big of a deal, considering I never drive anyways. I asked a few more standard questions about follow up, how to shower with a scar on my head, how to sleep, etc. After about 2 hours of waiting on my prescriptions and my release papers, I was a free man.

So here is where we are now. Brain tumor: removed. Tumor located in my rectum: needs to be removed. I’ve got an appointment to meet with the GI surgeon on Monday, May 7th in order to see what the timing on that is going to look like – all the doctors want to work together to ensure that my next surgery is far out enough for me to recover fully from the brain surgery. I’ve also got appointments with the cancer center at HCMC to talk about what chemotherapy and radiation is going to look like, but frankly, they can’t tell me anything on that until we get the results back from the biopsy of the brain tumor, which we are all still waiting on.

I’ve decided to spend the first few nights at my parents place just to make sure I can do everything on my own before becoming completely independent again. As you all probably know, the greatest present a man can receive on his 30th birthday is the ability to move back in with his parents. truth be told, they are wonderful, and have been great throughout this process. I will always be in their debt.

So I do have to share 2 funny stories since I returned back to the ‘rents. around lunch time on Monday, I opened up some mail that I received while I was in the hospital. One letter was from the Gastro Intestinal team, saying that it was nice to meet me, and that they appreciated the opportunity to work with me the week before my surgery. Everyone of the nurses and doctors from that team signed it. Although this was very nice, I couldn’t help but laugh because they were essentially saying “Hey, thanks for coming to us for all your butt cancer related needs! Refer your friends!”.

This next event almost led me to tears it was so funny. My mother, father and I sat down to dinner on Monday night. Both my dad and I were celebrating our birthdays (we were both born on April15th). As soon as we started eating, the phone rang. My mother picked it up, and handed it to my father; it was his very good friend of over 50 years, I’ve known this gentleman all my life. This is how the conversation went: Dad: “Hi Bob. What’s that? Let me ask. Chouhei, can I go to the Twins game with Bob tomorrow?” My mother looks at my father, makes him suffer a little bit, and then simply says, in monotone, “You may go” and returns to her food. My dad then gets back on the phone, and with all the excitement of a 10 year old boy, says to his friend, “Bob, I’ve got permission! I’ll see you tomorrow!”. I almost spit out my food this exchange was so funny. Mom runs a pretty tight ship.

As usual, thanks to everyone for all the well wishes. It looks like I have the next 2 weeks pretty much left to my own devices, which will be a nice little break. I’ll try to get into the office as soon as possible, but my scar looks pretty gross right now (again, it looks way worse than it actually is), so I may just work from home for a bit to spare my colleagues and teammates from unnecessary nausea. Right now, I am pretty much just waiting on the results of the biopsy, which will dictate how the treatment for all of this will go.

Cheers,

Eddie

So I Wasn’t at My Greatest Last Week

I’ll be honest, I’ve had a bit of a hard time formulating how I would write about last week. This is because in the days preparing for the surgery on April 11th, once again, my circumstances changed and things about my life were once again placed out of my control. Quite frankly, on the whole, I initially dealt with these circumstances like a damned fool. There are a lot of people who I have invited to read this blog that I will be ashamed will be reading this post. But screw it, I’m writing this at 9AM on a hospital bed, and sometimes a little honestly never hurt anybody.

How’s that for an introduction? Are you sufficiently sucked into the story yet? Man, this blogging stuff is EASY!

I’ll start with what I think was the coolest thing that happened last week; I was able to meet Doctor Walt Galicich, who was the main neurosurgeon in charge of my brain surgery. I met him on Tuesday, April 9th first thing in the morning. I liked him immediately. He was funny, very confident, and laid out exactly how the surgery would go. He also said (almost word for word) that “As far as brain surgeries go, this is as straight forward as it gets”. This is because the tumor is not connected to the brain at all, and they apparently don’t have to enter the brain at all to remove any of it. Most important, he made sure that I was comfortable with anything, answered all of my questions, and had a pretty good bedside manner. I could tell throughout that he was competent, and that he knew what he was doing.

I left HCMC on Tuesday feeling pretty good. My surgery was in 2 days, and I had planned on spending those two days wasting money on overpriced clothes, getting an overpriced massage at the Ivy Spa, and having overpriced dinners with family and friends.

Unfortunately, this is not how it turned out. Just as I was leaving the hospital, I get a call from Doctor Koreth, who is the oncologist I met with on the Friday April 5th to go over the initial PET scan results; If you don’t remember, she is the one that showed me that my rectum was pretty much looking like a lava lamp in the scan, and that very day ordered me back down for another sigmoidoscopy, which would collect more biopsies of the polyps they initially found down there. She also said on Friday that it is very likely that we will eventually find cancer down there. In my experience, doctors never tell their patients anything before having any definitive proof. This pretty much made it clear to me that we weren’t just dealing with a brain tumor, but that this is going to be a long, drawn out process. Well, this follow up call I received from the good doctor on Tuesday of last week was simply to confirm that they did find a tumor in my rectum, and that I am going to require an additional surgery in my  rear end after the brain surgery. I will also definitely have to have chemotherapy and radiation, but they did not yet know the order, aka they may do chemo/radiation first, then surgery, or vice versa. Apparently, it all depends on the results of the brain surgery. If the brain tumor is an actual brain tumor (meaning it originated there, and didn’t spread from my other tumor from my rectum), this will dictate a certain type of treatment schedule. If it’s the opposite, that will dictate another.

Although this was not a great phone call to receive, I wasn’t totally unprepared for the news, and frankly, I was kind of expecting the results to head in this direction. It was the second phone call that I received from Doctor Koreth, about 2 hours later on Tuesday, that really set me off. During our second chat, she informs me that she had a radiologist look over my PET scan that day for secondary results, other than the initial findings of cancer. She tells me that this radiologist confirmed that I had just formed two blood clots; one in my left lung and one in my right leg. She also tells me that I have to come to the hospital immediately to get these treated, and that she had already gotten a room prepared for me. This was not how I wanted to spend the last two nights of a relatively normal life before brain surgery, knowing that the next 9 months (at least) following the brain surgery are going to be a fairly wild ride. It’s safe to say, I was pissed off. I was rude to the doctor (for which I remain to be the most embarrassed about). I kicked a wall. I threw and broke a glass of water. I punched a chest of drawers. I screamed. All of which accomplished nothing except for giving me a bruised fist.

After a quick call with my parents, and sending out a few cancellation texts to some friends I had planned on seeing on Tuesday night, I pack a bag, and headed to the hospital. I was still acting like an idiot, and was fully prepared to be a complete jerk to everyone I came across. This actually turned out to be quite difficult, as the entire nursing staff that lead me to my room and got me set up were all very nice people, but somehow I pulled it off. They initially told me that they were trying to get a private room for me, but that for the time being, I had to share a room with another patient. Yet another slap in the face, I thought…still acting like a complete moron.

This experience of sharing a room with a stranger was actually the best thing that could have happened to me, and totally brought me out of the stupid pity party I was throwing myself. Soon after I got checked in, some doctors came into see this gentleman, and closed the dividing blinds between my bed and his for some ‘privacy’, even though I could still hear their entire conversation. I’ll keep any identifiable facts private about my “bunkmate”, but I learn from this conversation that he has been an alcoholic for over 20 years, and that he was in the hospital due to an injury he sustained while drunk by himself in his house. He has no one to care for him, has not spoken to anyone in his family in over 3 years, and mainly “keeps to himself”.

Meanwhile, not 20 minutes after I get to the hospital, my parents arrive. My aunt comes to visit. All my friends that I cancelled plans with are texting me asking if I am okay, and if they can come and visit. My sister calls. A few cousins call. the dichotomy between his conversation with his doctors and my situation becomes apparent to me immediately, and I immediately feel like a complete asshole for the way I’ve been acting.

This room sharing experience brought some much needed perspective. First of all, yes I did receive some bad news earlier that day. But one of my biggest mantras is that you can’t get mad at the things you can’t control in life, and I failed to do that. Not only that, but I took it out on people who had nothing to do with it either. Most important, I forgot that I actually have been blessed with a pretty great life….I’ve got it pretty good. I have large, wonderful family who I am close to and make me feel loved and thought of every day. I have made so many close friends for life who, at the drop of a hat, would come help me out of a jam, and vice versa. I have absolutely nothing to get pissy about, because it could be way, way worse. The last I heard about my former bunkmate was that the doctors offered him some substance abuse assistance before he was discharged, and that he refused. I’m not that religious of a person, but I have been thinking about him a lot. If you are a religious person, please add him to your prayers…I think he needs them much more than I do.

Anyways, true to form, these blood clots end up not being that big of a deal. After I got moved from the double room to a single room, a doctor comes in to see me; I’ve never met him before, but he was the attending physician for that floor of the hospital for the day. He said that the PET scan from last week showed two very small clots that must have formed within the last week, as neither of them show up on any of the tests that were taken of me when I was originally sent to the ER. Normally, they would just put me on blood thinners and send me on my merry way, but because I am having surgery in two days, this was out of the question, as it would cause me to bleed too much while the doctors would be working on my brain. So, they all decided to bring me in for observation for the two nights before the surgery just to keep an eye on me. I had to have another ultrasound, this time on my leg, which was done on Tuesday, and was uneventful. Then, on Wednesday, I had a small procedure done that injected a small filter into my Inferior Vena Cava…which is apparently a large vein in my chest. This filter basically keeps the two blood clots that have formed move anywhere else in my body that would be dangerous, like my heart. This actually sounds like a large invasive procedure, but it actually was a breeze. Much like the Wada test from the week before, they made a small incision into my femoral artery, guided up a catheter up to my vein, and dropped off this filter. It was done in about 2 minutes. As it was explained to me, these clots are basically going to go away on their own after the surgery, but this filter ensures they don’t move anywhere else.

As an aside, 2 of the techs in the room for this filter placement were also in the room during the Wada test the week before, so it was kind of fun joking around with them about some of the stuff I said while I was drugged up. For example, one of the items I was given to remember (but couldn’t) during the Wada test was a mini Brewers helmet. Apparently, while under the barbiturates, and after immediately being showed the helmet by Dr. Glass, I yell out “The Brewers Suck!!!” at the top of my lungs, which everyone got a kick out of, but I have no recollection of at all.

The rest of Wednesday of last week was pretty uneventful as well. I had a few more visitors stop by, and then spent the night mentally preparing for the surgery the next day. I’ll get to the surgery and the ensuing events afterwards later tonight. Thanks for reading!

Eddie

Surgery is Scheduled (Originally emailed April 6th, 2013)

Hey everyone,

I’ve finished the tests and I’ve finished with the doctors, and we have set a plan in motion. Bottom line, I’ve got some good news, and I’ve got some not so good news. Mostly it’s good news…so please let’s focus on the positives.
Part of the good news is that I’m going to have brain surgery on Thursday, April 11th.
This is also a very long e-mail, as a lot stuff happened this week, so bear with me; this is probably the longest email I have ever written. I want to be as detailed as possible, as there was a lot of activity over the last few days.
I’ll start with the fun stuff. True to form, the Wada test that was performed on Wednesday, April 3rd did not disappoint, and I found it to be truly fascinating (read: Truly AWESOME). My 24 hour on call staff (my parents), picked me up just after 9AM, and we got to the hospital at about 9:15. The first course of action was to go get lab work done, where some lab technicians took some blood. This was uneventful. Then, I went to the radiology clinic, where the staff started prepping me for the test. After getting into a gown, 2 very young guys – I’d guess around the age of 25 – starting putting metallic nodes on my head, essentially gluing them on with a type of glue that felt like epoxy. These guys were very, very nice, and probably guys I would grab beers with under different circumstances. As they were placing these nodes on my head, they explained that once these nodules were connected to a machine in the test area, they would be able to indicate when the sides of my brain were lowering in cognitive function during the actual test, finally to the point that one side is completely inactive.
Then a woman named Dr. Glass came into the prep area, who was a PhD in Neurobiology. This was my first time meeting her, and I could tell that she was really, really smart. She also had this air of confidence about her, and she was sort of unapologetically nerdy…it’s safe to say that I liked her immediately. She was going to be the one who administered the Wada test in the test area. After introducing herself, she gave me a “baseline” test which accomplished two things. First, this explained the exact process of how the actual Wada test would go. Second, it also gave her an idea of how I communicate normally. She didn’t say this, but I am under the impression that a lot of patients undergoing this test have differing levels of education, intelligence, and language skills, so I think she needed to understand first what kind of person she was dealing with. I am not one to brag, but I absolutely nailed this baseline test. During the first portion, she gave me a list of roughly 50 words that she wanted me to read to her. These started off easy, and then got more and more difficult. The first couple of words that I remember were “test,” “toast,” “milk”, etc. Some of the last words that I remember were “oligarchy,” “assuage,” “pseudonym,” “picquet”, etc. I nailed every single word, except for the last one, which was “terpsichorean”. I pronounced it “terps-ishore-ean”, and it is actually pronounced “terps-eh-kur-ean”. As you can probably tell by me bringing it up, the fact that got this one wrong still annoys me. That said, I was told that I did well overall. Again, Dr. Glass didn’t say this, but I think she was trying to get a good understanding of my language and pronunciation skills (you will see why when I get to the actual test). After this language prep test, she then went into the actual questions which she would ask me during the real test. She asked me to count to 20, she showed me a couple of items which she asked me to memorize (i.e. a piece of tape, a cell phone, a race car, a stapler, etc.). She then asked me to repeat a few statements like “No ifs ands or buts” and “Methodist Episcopalian”. Then she asked me to recall the items she previously showed me. Like I said, I pretty much nailed all of these.
After this, a nurse brought me into the actual test area. This was essentially a surgery room, and was a sterile environment. There were 2 technicians, 2 other nurses, and the 2 younger guys who glued the nodes to my head. They were all wearing full scrubs and masks. Then the doctors came in. There were two neurologists, Dr. Rob Taylor who was the senior neurologist overseeing the test, and Dr. Ken Shea, who was the Junior fellow. Finally, Dr. Glass was also there with an assistant.
Dr. Shea started off by numbing my hip and thigh area with something sort of like novocaine. Then he made a small incision into my femoral artery. This artery is located near the groin, in between the hip bone and a few other parts of my body that I care about immensely (’nuff said), He then inserted a catheter into the incision. Apparently, this was guided all the way from my groin up to my left and right carotid arteries, which, for those that are interested, are located in the upper chest. Apparently, the carotid artery feeds directly into the brain, so they wanted to inject all the drugs there. They started off by guiding the catheter to the left carotid artery. Then the doctors told me to hold my breath and not move at all. They injected Sodium Barbital (a barbiturate) into the left side of my brain through the catheter and left carotid artery. It’s hard to explain the next sensation. I felt the entire left side of my head, from my face to the back of my neck, get very hot. I could also see what looked like lightening in my vision. Dr. Taylor then asked me to raise both my hands straight up in the air. After about 2 seconds, my right arm immediately fell back to the table, which indicated that the left side of my brain had shut off (apparently the sides of the brain control the opposite sides of physicality), and the test began.
Dr. Glass asked me to count to 20. This is how it went, with my left brain shut off: I said (also slurring my words a lot) “One. Two. Six. Eight. Five. One”. It’s difficult to explain what I was thinking at the time; I could tell immediately that I was not counting correctly, but this also didn’t seem like a big deal to me; I remember thinking I was doing really well. Dr. Glass then showed me a few items like before and asked me to memorize what she was showing me (e.g. a mirror, a fork, etc). She then asked me to repeat the phrase “Methodist Episcopalian”, which I again slurred and could not say correctly…I think I said something along the lines of “Messody Episcal”. She then asked me to recall which items she showed me. I correctly identified a couple, but got a lot wrong. She also showed me a few other items and asked me “did I show you these items before?” I recalled that yes, she did show me these items, when in fact, she did not. After this, she showed me a few pictures and asked me to point to things like a square or a circle, and asked me to repeat phrases back to her. I did this correctly, which signified that this part of the test was over. After a couple of seconds, I was back to normal. My immediate reaction was “Holy crap that was awesome, let’s do it again!”
They took about a 2 minute break, which they used to move the catheter from my left carotid artery to my right carotid artery. Keep in mind too, that the entry point was in my femoral artery, so they had to guide the catheter down my internal body, then back up my chest; all from outside my groin area; I find astonishing that medical professionals can do this so easily. Then Dr. Taylor again asked me to hold my breath and stay still, and again injected me with Sodium Barbital, this time into the right side of my brain. I had the same sensation on the right side of my head; it got very hot, and I saw the same flashes of lightening in my vision. They asked me again to raise up my hands, and this time my left hand fell straight back to the table, which signified that now my right brain (the side of the tumor) had shut off and the second part of the test began.
Dr. Glass asked me to count to 20, which I actually did just fine. She then showed me a list of items again and asked me to memorize them. She asked me to repeat the phrase “Methodist Episcopalian”, which I did just fine. She then asked me to recall the items which she showed me, and I couldn’t recall a single one (I guess this isn’t that uncommon), and she again showed me items which she never showed me, and I correctly stated that she never showed me any of the selected items. After I started answering the same cognitive questions as she asked me before, the test was over, and I returned back to normal shortly.
All in all, I found this test to be absolutely fascinating, and quite frankly…I wish someone taped it; and oddly enough, I wish I could take it again. I feel like experiencing this test is going to make me the king of cocktail parties for the rest of my life; I am definitely not doing it justice by writing down the events in an e-mail; the entire experience was absolutely surreal. After the test, they brought me into an observation room to rest for 2 hours, and I went home, roughly at about 4PM. I will get to the results in a moment. However, if you are keeping track at home, you can tell that it is mostly the results that I wanted going into the test (this is going to be the good news).
The next day (Thursday, April 4th) I went back to HCMC for the PET scan. Compared to the Wada test, this was an absolute disappointment. As I mentioned in my previous email, they were looking for anything that lights up in my body, which would mean that there are some lymph nodes that are cancerous. However, any major movements of my arms and legs can cause things to light up as well, giving false positives. So, they basically kept me in a closed room for one hour before the test, where I couldn’t read a magazine, check email on my cell phone, or anything else. Basically, I had to stare at the wall for an hour. This was mind numbingly boring. Occasionally they came in to feed me the contrast solution and inject me with dye for the test. They then brought me into the test area, and it was a lot like an MRI, where I laid down in a big tube and they took pictures of my body. This was fairly uneventful (the result of this test, however, is going to be the bad news…see below).
The next day, Friday, April 5th, I went back to HCMC to get the results of the PET scan, and met with Dr. Korenth, an oncologist. The results we went over were not great. As I mentioned, we were hoping for everything to stay dark. Apparently, the PET scan measures the level of glucose that is being taken in by my body. The more the glucose, the more things light up, and the more likely it is that cancer is present in those areas. As I previously mentioned, the biopsies from my intestine and rectum came back negative, which gave me hope that the PET scan would show positive results as well, and that everything would stay dark. Unfortunately, the scan showed my rectum lighting up like a Christmas tree, which means its fairly likely that cancer is present there. This will probably mean additional surgeries and more aggressive chemotherapy and radiation. As such, Dr. Korenth brought be back to the GI team for another Singmoidoscopy, where they took more biopsies from that area, the results of which we will know about next week. So clearly, this wasn’t exciting news. That said, here is the positive spin I’m taking from this test…nothing in my liver, my lungs, or anywhere else lit up, which means that the cancer is treatable. Furthermore, they haven’t officially found anything 100% cancerous in my rectum…YET. I am still hopeful that they won’t find anything and that the Christmas tree was an aberration. We will know more about this probably on Tuesday of next week.
After I got home from this test, I received a phone call from Dr. Kaiser. She is one of the neurosurgeons, and the first one from the neurology team who came into my room last week after I found out I had a brain tumor. I really like her…she is really nice, and I can tell she cares deeply about her patients. She told me that the Wada results were back, and that the results were not what they were expecting, but good nonetheless. If you remember, we were all hoping that the left side of my brain would contain the speech and language function. Apparently, the Wada test showed that I am part of a very small population, roughly about 5% of people, that have speech and language function on both the left AND right side of my brain. That said, because I am left handed, most of the language and speech are located on the left side. This means that they can go into the right side of my brain and remove the entire tumor, with very little risk of losing any functionality, of which I am very, very relieved (again, this is good news).  With all of this figured out, she mentioned that rather than simply doing a consult on Tuesday, April 9th (as previously scheduled), they wanted to schedule the actual brain surgery. I told her that I don’t want to do the surgery until I meet the main surgeon who is doing the surgery. His name is Dr. Walter Galicich. He has a very good reputation, but I don’t want anyone entering my brain without shaking his/her hand first. So they moved the actual surgery to Thursday, April 11th, and I am going to meet him Tuesday April 9th.
The main purpose of the brain surgery (besides, obviously, removing the tumor from my head), is to send it back to the lab to study what kind of tumor it is. After the results come back, I’ll know what’s in store in terms of long term treatment…i.e. chemotherapy and/or radiation in my brain.
So, about the surgery. It’s going to be at 6AM on Thursday, April 11th, and will take about 5 hours. As I previously mentioned, Dr. Walt Gelicich, who is the senior neurosurgeon at HCMC, will be performing the surgery. As it was explained to me, he has done the most brain tumor surgeries out of anyone at the hospital. Also, Dr. Mick Belzer, who is a family friend and the CMO at the hospital (I’ve written about him before), also said he was very good, and would be comfortable having him perform surgery on his own children. All this information makes me feel great about the hands that I’m in at the hospital. I have not yet met him though, and again, I want to meet him before the surgery itself. So, I scheduled some time to go meet him on Tuesday, April 9th. I’m sure this will go fine, but frankly, the reality of having a piece of my skull removed while they remove a tumor in my brain is starting to sink in. That said, the doctors are incredible surgeons who are very good at what they do, and they have done these surgeries many, many times, with great results. Furthermore, they aren’t even going to be touching my brain at all…they are only removing the tumor which is located on the outside of my brain. So, I am a little anxious, but I fully trust the surgeons that I’ll be with.
I’ll be in the hospital for about 5 days after the surgery. I’ve already gotten a few questions about visitation; I know this comes from a great place, and I appreciate all the support; thank you. I would love for people to come visit, but based on my last experience recovering from colon cancer surgery, I have a few requests. Please don’t come and visit until Sunday. This is because the first few days I am going to be in full recovery mode and hopped up on some major drugs. Also, if you do come to the hospital, please only plan on staying for about 15-20 minutes; there are going to be a lot of doctors in and out of the room checking in, and quite frankly, if this is anything like the last time, I am not going to have a lot of energy. Also if you or anyone close to you is sick with a cold or a flu or some other bug, please do not come visit; there will be plenty of time for us to see each other when I am out of the hospital and we are both feeling better. Finally, I want to provide full disclosure: I am going to look really, really weird. I’ll probably be super thin, my head will be shaved, I will look pale and sickly, and I am going to be hooked up to a bunch of tubes. This is going to be a lot to take in, so please don’t feel like you need to come and visit to show your support, I already know that I am in your thoughts.
That’s about all I know, folks. I am assuming that I will have to have another surgery eventually to remove the cancer from my rectum (if in fact there is cancer there), but we will cross that bridge when we get there.
This will probably be my last email I’ll be sending out for a while, but hopefully once I recover I’ll send out an email to let people know how I’m doing. As of right now, I’m doing great, all things considered. Despite the fact that I probably have cancer in my rectum, there isn’t cancer anywhere else – of which I am very relieved. I have a lot of friends and family who let me know that they love me very much, so I consider myself very lucky.
Also, as an aside, ever since I found out about the brain tumor a week and a half ago, I have sort of said “goodbye” to healthy eating and exercise, which if I’m being honest, has been a little liberating…I’ve literally been stuffing my face full of red meat, chocolate, and candy pretty much non-stop. I may or may not continue that after the surgery, but for right now, it’s been extremely gratifying.
My chin is up, and looking forward to getting the surgery over with and getting back to my normal life as soon as possible.
Cheers,
Eddie

Interesting Week #2 (Originally emailed on April 2nd, 2013)

Hey folks, as per usual, please forward this to anyone I’ve missed…I haven’t added that many names to the addressee list from last week’s e-mail. To be honest, that’s a little by design. I have always tended to be an over sharer, and I have always wanted to know everything about everyone, but I get that not all people are wired that way. So I’m relying a bit on those receiving this to share these emails to those that are interested. Moreover, if you are receiving these emails and do not wish to receive any more, please let me know and I will remove you, no questions asked.

Anyways,  again on to the meaty stuff.

I’ll start with Friday, March 29th, my last day in the hospital. Full disclosure, it gets a little gross from here…I’ll try to keep it as PG as possible, but those of you who are faint of heart may want to get the cliff notes from someone else. That said, on Friday morning, a very nice nurse named Dee was in charge of my care. She woke me up at 5AM to take my vitals (standard practice), and we joked around a bit about her crazy work hours, and how much I loved staying in hospitals.

However, the honeymoon was over for me, so to speak, when she had to give me an enema at 7AM; and I’m fairly certain it wasn’t exactly a picnic for her either. I had to have this enema because the Gastro Intestinal team at HCMC wanted to give me an endoscopy, where they shove a camera down my throat, and a singmoidoscopy, where they shove a camera up…somewhere else (‘nuff said). I was kind of dreading this, but the GI team at HCMC drugged me up so much that it actually wasn’t that bad.

To give everyone some background, I had colon cancer when I was 17. During that bout of cancer, the doctors removed my entire colon and connected my small intestine to my rear end so I can go #2 normally, albeit a little more often than a normal person would. Because of this history of cancer and now having a brain tumor, the doctors wanted to check that area with these camera tests on Friday in order to see if anything has changed (i.e., if cancer has returned to that area of my body).

I met with a GI Doctor soon after the endoscopy and singmoidoscopy, and she gave me some news which, at first pass, wasn’t great. The cameras found a “concerning” amount of polyps on the connection between my small intestine and my rear end, and they took biopsies of these polyps to test to see if any of these were cancerous…more on this later, but suffice to say, this was horrible news to start the weekend (don’t get too bummed out, it gets better).

Some neurosurgeons came in after I met with the GI doctor, and they told me that the more comprehensive brain test was set for Wednesday, April 3rd at 10AM (aka tomorrow). This brain test is called a Wada test, apparently named after the doctor who invented it. I must say, the nerd in me is kind of looking forward to it (look it up on Wikipedia…the test itself is pretty interesting). Apparently, they are going to shove a camera into my thigh and guide it up to about neck level. Then, they are going to drug me up full of barbiturates that will turn half of my brain off. They are then going to speak to me and see how I respond. Then, they are going to drug me up again and turn the other half of my brain off and ask me another set of questions. This will, so I’m told, give the doctors definitive answers as to whether or not the speech and language is on the left or right side of my brain. Which will, in turn, give us a proper course of action to move forward with surgery. The hope is that my language and speech functions are on the left side of my brain, so that the surgeons can go into the right side and pretty much take the entire tumor out. If my language functions are on the right side, however, there is only so much of the tumor that the surgeons can remove safely without impairing my speech. Everyone who knows me well knows that I love to hear myself talk, so I’m certainly hoping for left side placement.

I was released from the hospital shortly after this meeting with the neurosurgeons, and it was really, really nice to sleep in my own bed after 3 nights in the hospital. It was also nice to spend time this weekend with a lot of friends and family.

I went to work on April 1st, for the first time since I passed out at the gym last week. Everyone was really, really great yesterday morning, and I truly appreciate all the well wishes I received from all the Oracle-ites. However, in retrospect I was on the phone a lot trying to schedule a flurry of tests, and I was fairly distracted from the job, which, quite frankly, I was hoping would distract me from the whole tumor situation instead. So I decided to go home in the afternoon to get all the scheduling taken care of. The process got a little overwhelming, and to be honest, I needed a little bit of “freak out time” on my own.

Tuesday was much, much better. I was able to focus on work, and I was able to catch up with a lot more people that I wasn’t able to talk to on Monday.  I also was really, really busy, which quite frankly, was a great feeling. I think moving forward, I want to be in the office as much as my health will allow. The problems I face at work are somewhat controllable, and it’s much easier to make “to do” lists, and much more gratifying to check off accomplished tasks at work than at the hospital. It also helps that everyone on my team are fantastic reps that help to make my job much, much easier. 

Tuesday morning also started off with absolutely fantastic news from the oncology team. As previously mentioned, the GI team was concerned by some of the polyps that they found on my intestines on Friday. I received a call from Dr. Rausch this morning, who is the oncologist that was assigned to my biopsies. In a conversation with him on Friday, he had previously mentioned that I should expect some to be cancerous, but this morning he told me that all of the biopsies turned out negative. This means that none of the polyps found on Friday showed any trace of cancer. He did set expectations that I am not completely out of the woods, and the PET scan (I’ll get to this in a second) will show if any of my lymph nodes are cancerous. He did underscore though, that this biopsy result was a very good start. Quite frankly, this was the best news I have received since this whole thing began. As such, I took a few minutes to go into the private bathroom at Oracle and did some aggressive fist pumping while listening to “Eye of the Tiger” by Survivor before returning to my desk.

That said, from taking the afternoon off on Monday, I also do have a set schedule for moving forward, which I am pretty happy about as well. As I mentioned, the Wada test is Wednesday, April 3rd at 10AM.  Then I have the PET scan on Thursday, April 4th, at noon. As it was explained to me, this is a test that lights up cancerous lymph nodes throughout my entire body. If any lymph nodes light up, it means that cancer has spread there and it will make treatment a little bit more intense (aka, more aggressive chemo and radiation, and possible additional surgeries). Thus, in this instance, anything that lights up is a bad thing…so please send some positive thoughts my way that things stay dark on Thursday. On Friday, April 5th, I meet with the oncology team, where they will share the results of the PET scan, and I am assuming a chemotherapy and radiation plan, based on those results. Next Tuesday, April 9th, I meet with the neurology team to discuss the brain surgery based on the Wada results tomorrow.

I’m the kind of person that likes having a plan, so I am fairly excited that I was able to get all this done on Monday. We are not quite at a full plan yet, but we are getting there.

I’ve mentioned this before, but I can’t reiterate enough how much I appreciate everyone’s thoughts and prayers. This week has been a good week, and I have no doubt that it is in direct correlation to those of you who have been pulling for me. Thank you all.

I’ll share the results of this week’s tests as soon as I can.

Cheers,

Eddie