Surprise Hospitalization and Surgery Postponed

I noticed a few weeks ago that I had a lot of heartburn or acid reflux. On my birthday (2/13/11) we were having dinner at Brea and Eric’s house, which we do every Sunday after bible study. My heartburn was pretty intense that evening and I actually drove home quickly (they live around the corner) to get some chewable Pepto tablets. The tablets seemed to do the trick.

Later on that week we had to drive to MD Anderson in Houston for tests and scans to prepare for my surgery. On Wednesday 3/16 I had a CT where they inject a dye so that the blood vessels can be seen in the scan. In my case, an iodine based dye was used. When they inject iodine dye in someone, the most common side effect of iodine is a warm or "flushed" sensation during the actual injection of the iodine, followed sometimes by a metallic taste in the mouth that usually lasts for less than a minute. This was all true for me except that I also felt a very intense warming around or below the area of my heart. I’ve had a CT before and didn’t remember the feeling being that intense before, but I figured it was no big deal. The CT scan was done to map all the blood vessels in my brain for the surgery.

After the CT scan I had about two hours of cognitive testing where I had to remember words and groups of numbers forward and backward. I also had to think of words that began with specific letters and had to do some logic puzzles. These were all done to provide a baseline for before and after the surgery to see if any capacity was lost.

After the CT we met with the anesthesiologist, a very nice guy. He spent about an hour with us explaining the procedure and walking us through every step. He said that the surgery is planned to be about six hours. The first two hours will be taking me into the BrainSUITE operating room, anesthetizing me and cutting through my skin, skull and the dura, the tissue covering the brain. He said that during the next stage of the surgery I will be woken up and the surgeons will remove the tumor from my brain. Yes, that’s right… I will be fully AWAKE. Not in a haze, not kinda awake/kinda asleep, freaking AWAKE!! He said that they don’t want any drugs to inhibit me in any way. If something gets touched or whatever they want a real time 100% accurate reaction and description from me. WEIRD!!! They will also have the convenience of having an MRI machine in the BrainSUITE so that they can scan me to make sure they got everything before they close me up. When they are sure they are done, they will put me back to sleep, close me up and roll me into recovery. Pretty much all of the staff think I’ll be out of the hospital in 3-5 days. We will see about that.

The next day, Thursday, I had a regular MRI and also an fMRI or functional MRI. During the functional MRI they asked me to think of words that start with a specific letter but I was not to speak them, only think them. Then I would have to open and close either my right or left hand, then I would get another letter, then have to open/close my hand. I think we did this for three letters. We did some other similar tests and that was it. This was to map out in my brain where the area of my thinking during each activity was located. Apparently all the blood rushes to that specific area and they can see it on the computer screen. This will help the surgeons know where certain functions are in my brain during the surgery. They will combine all these scans together into 3D images so that the surgeons can navigate my brain properly and avoid critical areas.

After all of our appointments on Thursday we had lunch and again I felt like I had a bit or heartburn. That feeling stayed with me until I got home and I took some Gas-X before going to bed. I woke up Friday morning 2/18 and commuted to work (about 100 feet from my bed to the office… HA!) for a 9am start. But by 11am the pain in my chest was getting worse and worse. It felt like the pain was under my sternum in the middle of my chest. I told my manager that I needed to stop working and I called our doctor to see if they could get me in but the pain was too much and I asked Holly to call 911. The pain was in my chest and if it was my heart, I didn’t want to mess around. The paramedics and fire truck showed up about 5-10 minutes later and they stuck about 16 sensors on my chest, arms and legs and were able to rule out my heart. At that point the firemen left and the paramedics asked me some more questions. They suggested that with my pain and where it was located that they should take me to the ER, I agreed. Off we went to the hospital. The hospital was able to diagnose me with pancreatitis (inflammation of the pancreas) within two hours of my arrival. I was told that they would like to admit me and that my treatment would be no drink or food until the doctor deemed I was well enough to go home. They also gave me some IV pain medicine to kill the pain in my chest. And let me tell you, the meds were great! They gave me Dilaudid, which is an awesome pain killer.

What does the pancreas do? The pancreas makes pancreatic juices and hormones, including insulin. The pancreatic juices are enzymes that help digest food in the small intestine. Insulin controls the amount of sugar in the blood. For more detailed info, check out MedicineNet. And I don’t want to bore you with all the details, but if you want to read more about pancreatitis, you can at eMedicine. The usual causes of pancreatitis are gall bladder stones and alcoholism. They ruled out stones with an ultrasound and I definitely do not abuse alcohol. But there is one possible cause: my anti-seizure medication. Before I could start the clinical trial at MD Anderson I was told that I would have to stop taking Tegretol-XR and would have to take Depakote ER instead. Well, if you read the drug label for Depakote at RxList, you’ll see that the third paragraph says Depakote can cause pancreatitis… BINGO! We stopped Depakote Friday night and went back to Tegretol. I ended up spending the whole weekend in the hospital hooked up to only an IV but began to feel better on Monday 2/21 was allowed to have chicken broth for dinner that night and then had cream of wheat for breakfast the following morning. I wasn’t taking much of the pain meds Mon and Tue so I was discharged Tue afternoon.

When I got home on Tue I weighed myself and I had lost seven pounds from not eating. I rested most of Wed and worked a few hours Thu and Fri. I felt fine over the weekend and was back to work today. Unfortunately, MD Anderson called me last week and told me that because of my hospitalization, they were going to have to postpone the surgery and reschedule it for late March. Since they do the surgeries on Thursdays, I think it will be on either March 24 or 31. So, maybe it was a blessing in disguise. I need to get back to 100% and although I feel like I am there now, the doctors are right. Plus, Holly and I lost a whole weekend of being able to do stuff and we have a lot of financial and paperwork to complete before then. Plus, I wanted to get our taxes done. So, we’re fine with that. The past few weeks have been a little nuts for us. Especially with Holly’s surgery, my hospitalization, can it get any crazier?!? Stay tuned to find out.

A Month Off

Well, now that I went back to Dr. K's for a post-op visit today and got all my questions answered I feel informed enough to post about my laparoscopy. Roger tried as hard as he could to take notes and remember everything, but Dr. K snuck up on him after my procedure which didn't give him any time to prepare for taking notes or remember all that he was given including detailed pictures (awesome!) and recovery instructions. Thank goodness they print all the recovery instructions out and give them to you.

But it went as smooth as possible considering they found more in there than they expected. Turns out I had stage one endometriosis. I had no idea I had it at all. But after reading a lot about it over the weekend, you don't really know for sure you have it unless they go in and look and find it. But I am glad it was found, removed and one more thing is out of the way. I am hoping some pain symptoms I had previously will go away maybe even though I don't know for sure if they were caused by the endometriosis. There was endometriosis on my ovaries, bowels and they also found a lot of scar tissue in my uterus. Dr. K said that although it could also be endometriosis since I have never had anything contributing to it in my medical history (pregnancy, abortion, d&c, etc) they can not explain the scaring in my uterus. There was also scarring or something going on in my uterus which "covered" the pathway to the right fallopian tube. The dye injected in went every where it was supposed to go and I'm on my way to try again in the future. But not the too near future. Because they did have to scrape my uterus (and left a uterine balloon stent which he removed today to prevent the uterus healing together) he wants me to give it a good month or two off. So not only "vaginal rest" for two weeks (I know, that's sounds so bizarre but means no bathes or sex) but no cycle at all. So I am on a hormone pill for a month to prevent my cycle starting this month then when I do start my cycle he wants me to have one normal cycle before we try IUI again. Plus Dr. K doesn't want us to worry about getting pregnant while Roger is in Houston for his craniotomy. Dr. K is really nice. It was really sweet of him to remember what Roger is going through and care about both of us and our health and well being.

Having a laparoscopy was pretty much what I expected except the recovery on Thursday. Everyone makes it sound so simple and because it's internal without large incisions there is not as much pain that I really thought I would be walking around or at least sitting around watching TV or reading. But no, there was definitely discomfort which would have made it hard to sleep if not for the vicodin. But other than that, the rest of the recovery has been easy. There are really only two annoying parts so far: the bleeding which requires wearing pads for a few days and not being able to be active at all. Having to be careful, not over due it, over exert, lift anything heavy or do strenuous activity is hard for me. So no hiking, running, weight lifting, crazy yoga/pilates moves, nothing. Not even reaching too far to help hold something to install a new kitchen faucet. Roger is making sure I follow these instructions to the letter. Big sigh.

And we're off to Houston this week for all those tests Roger needs to prepare for the craniotomy. Then we have two weeks off before for we go back for the real deal. We've been doing a lot of paper work getting ready for short term disability and making sure all the paperwork for Army insurance/reimbursement is squared away, getting all our FSA claims in and other financial stuff in order and are now working on our taxes to get everything done before his surgery. We don't want to leave anything undone so we don't have any thing else to worry about while we're at MD Anderson Cancer Center. So thanks again for all the prayers, well wishes, love and concern. They have been felt and appreciated. We will of course update the blog often with Roger's test results, etc. ~ Holly

More Surgery Info

So, Roger's surgery is set for March 3rd which is exactly five years from his first craniotomy. He has appointments next week for a bunch of tests the surgeons will use to prepare for his surgery. But this week I'll be having surgery myself. I am having the laparoscopy on Thursday to remove the blockage from my right fallopian tube. It is an outpatient procedure which shouldn't take more than two hours. I am glad my surgery is getting done before Roger's so I can recover and be done before he has his surgery since we won't know how he will be affected by the craniotomy. Roger will be updating the blog on Thursday after my procedure. Thanks again for all the prayers. We really do have a lot of peace going into both of our surgeries. ~ Holly

Brain Surgery Date Set?

Not a whole lot to share but it looks like the surgery is scheduled for Thu, March 3, 2011. I only know this because MD Anderson has a web portal where you can see all your records and appointments and out of curiosity I thought I'd see if they posted anything yet, and they did. I have a bunch of PreOp tests, like the MRI,  the day before but I don't see the CT, so they must still be getting things together. I guess they will give me a call when everything is 100% lined up. Just a quick update for you. Will pass on more when we know it.

-Roger

The Verdict: Brain Surgery... Again

Well folks, the verdict is in… the next step is brain surgery... Again.

It was kinda funny to me that we drove 200 miles and 3 hours and only talked to my neurosurgeon, Dr. Lang, for about 15 minutes. He really didn’t sugarcoat it at all, which I appreciate. He just came out and said that it needs to come out. We asked about the trials that Dr. Conrad mentioned. The virus trial is only for patients that had a grade 3 Ependymoma that was removed and then came back. I only had a grade 2, so that one is out. The other two chemo treatments are done after removal of the tumor so we can't do those yet. He said that it is growing, and really needs to come out before it causes any damage.

There are both good and bad things:

• The bad? It’s freaking brain surgery people! There a lot of things that could go wrong.
• The worst? I could die. Just saying.
• The not so worst? I could lose movement and possibly feeling in my right leg forever, maybe my right arm and torso, and my speech center could be damaged.
• The best? I’m a little tired and weak at first but make a pretty good comeback.
• The bestest of all? I’m having my surgery at MD Anderson! It is one of the best, if not the premier cancer hospital in the world. That’s pretty awesome. (I hope my insurance doesn't disown me. Can they do that? Especially if it’s the government’s Tricare??)

First they have to look at the calendars to make sure all the staff are necessary available to perform the procedure. We’re currently looking at a time frame between Feb 22 and Mar 3. Incidentally, Mar 3 is the 5 year anniversary of my first craniotomy. Weird, huh?

Dr. Lang told us that because of the blood vessel that runs through the tumor they want to do a CT Angiogram; this will allow them to map the blood vessels in my brain so that they can see what this vessel might be feeding.

Next, they may do a portion of the surgery with me awake. They would start the surgery like normal, with me completely out, but then bring me out of anesthesia so that I could answer questions and they might also stimulate parts of my brain to see what happens to map it. I found an interesting excerpt from the Ohio State University Medical Center website in an interview with Dr. E. Antonio Chiocca, director of neurological surgery at Ohio State University Medical Center, regarding awake brain surgery:

Patients undergoing awake brain surgery are anesthetized just enough so they will doze during the incision in their skin and removal of a section of the skull. Anesthesia is then withdrawn and patients are coaxed into consciousness so they can speak during procedures on the brain itself.

“You need a very good team to do this. Neuroanesthesiologists give patients just enough medicine so they will sleep during the first phase, and then they will wake them up when we get to the brain,” Chiocca says. “We have a speech pathologist talk to the patient as we remove the tumor. If we notice any trouble speaking, or if the patient develops a halting pattern of speech, we know we’ve gone too far and we stop.”

"Though these brain centers are universal among patients, the mapping and imaging allow physicians to adapt to the “uniqueness of each brain,” Chiocca says. “And having the patient awake allows us to take care of individual differences.”

Patients who undergo awake brain surgery often are able to leave the hospital and return to normal activities within 48 to 72 hours.

Sleeping patients whose surgeries occur near these speech, memory and motion centers of the brain are at higher risk for suffering temporary or permanent deficits, but some patients will opt not to be awake, Chiocca says.

I am totally for being awake during the procedure if it helps them and gives me a better chance of coming out with less deficiencies.

MD Anderson BrainSUITE

Last, if they deem it necessary (I think it is, but that’s just me) they will perform the surgery in MD Anderson’s BrainSUITE. It is basically an operating room with an MRI machine in it so that the doctors can see what they are doing in real time. It helps them to see if they have removed the entire tumor before they end the procedure. In 2006, MD Anderson was the first hospital in the world to purchase and implement one of these systems. There are currently only six in the US. This thing is cutting edge and I hope that they decide to utilize this awesome technology.

• So how do I feel about all this? Well, I’m ready, I’ll tell you that.
• Is it scary? Yes, I’m not going to lie.
• What are my fears? I’m not afraid of death. These guys are going to take care of me and I know that’s not going to happen. But if it does, Holly and I have talked about the ‘ifs’ and there are some preparations we need to make. We’re not stupid. I mean heck, someone could trip over a cord in the OR and kaput, I’m toast. You have to think about these things!
• Am I worried about how it might affect my body? I’d be lying if I said no. But, if I survive and they get this monster out of me forever, no matter what deficiency I have, I’ll be the happiest man in the world. I’ll deal with it. I have learned how to live with limited mobility on my right side and I can do it again.

Dr. Lang said that I’d probably have to recover at MD Anderson for 3-5 days and could go home if there are no complications. If I do require therapy they have physical and occupational therapy in the hospital and could stay there for a few additional weeks if necessary. I’m looking forward to putting this all behind us and moving on. I’m tired of cancer lurking over me. I just want to give cancer the finger like my friend Eric did. No, really. He had cancer on his finger and they amputated it at MD Anderson. I’m not kidding. Well, I’m not going to give them my finger, but they can have my tumor, and just a little bit of brain tissue for clear margins. As soon as we have more info, we’ll let you know.

Thanks for reading and please continue to pray for me and Holly. We’ve got a lot going on right now, (Holly is having laparoscopy next Thursday) but somehow just being here together for each other makes it all better.

-Roger

First Trial Ends, Back to MDACC for Other Options

Holly and I made the trip back to MD Anderson in Houston last week for my every other month checkup while on the trial. For some reason I had a feeling this was different, and I was right. When we started the trial, one of the guidelines was that if the tumor grows 25% larger than it was at the start of the trial, we must stop the trial. We found out that we are now at that point, and we have to stop this trial. I have to say, I don’t know why, but I had a feeling this was going to happen. Now, stopping the trial is not necessarily a bad thing. First of all, I don’t have to take gobs of pills everyday now! Another plus? I’m regular again and don’t have to rely on stool softeners and fiber to counteract the drugs every other week! (I know, gross, but you don’t know what this means to me.) Lastly, they don’t know for sure, but even though the tumor is still growing, the drugs may have slowed its growth. So they got some data from me for the trial and that’s a good thing. I hope it is useful for someone down the line.

Where do we go from here? Last week when we visited with my Neuro-Oncologist, Dr. Conrad, we discussed the MRI. They are unclear of exactly what they are seeing. It could be tumor, necrosis (dead tissue), cystic tissue or something else. He believes that at this point the best thing to do would be to perform a biopsy of the tumor to find out exactly what they are dealing with so that it can be treated properly. After that there are several options available:

• Virus trial, where a reengineered virus is inserted directly into the tumor, the virus eats the tumor, stops at brain tissue and then dies. I wrote more about this trial back in June, check it out.
• There is one chemo treatment option that is new that I can’t remember if it is a trial or not and another that is a trial that Ii think is not quite available yet; both are IV chemos.
• Lastly, all out surgery, which we are trying to avoid.

We have an appointment to see my neurosurgeon, Dr. Lang, tomorrow (2/2/11) at MD Anderson to talk all of these over and see where we go from here. As soon as we know what’s going on, I’ll let you, our faithful readers and supporters know.

I wanted to share some stats and images with you so that you can see where how things are progressing.

First of all, I decided I'd make a table so that I could see for myself how the tumor is growing. I know it sounds weird, but I need to know these things and thought it would finally be good for me to put it on paper. I did it in Excel but can't make a table in HTML to save my life, so I took a screenshot. All the measurements are in millimeters and I took them from all the Radiologist Reports I get from each MRI. As you can see, even with the medications there has been pretty steady growth, but to the doctors, they see it as slow growth.

Next, I wanted to share two sets of MRIs. The first was taken at MD Anderson on Jun 1, 2010. The tumor is still fairly small and compact. Click each one to see a larger version.:

Brain MRI - June 1, 2010

Last, here's the latest MRI from last Monday, Jan 24, 2011. As you can see, there are some areas of black that have a white border, they think those might be cysts, but just are not sure:

Brain MRI - January 24, 2011

I just noticed that the images from last week are a bit darker, but i think you get the point. There are definitely some changes and the doctors want to know why it looks the way that it does. So, off to Houston again tomorrow. We'll let you know what the plan is soon.

Thanks again for all your prayers and support.

-Roger