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| On October 6, I had my first MRI since July. Even though a flat tire tried to mess up our day, we made it on time and had a successful journey. There were a couple of areas of enhancement in the July MRI that we were watching for: two little nodes and a splotch on the side that could have been related to the infection (which was present at that time). These were all definitely reduced as of this Tuesday's scan. This is very reassuring, especially for the two nodes that seemed to grow like tumor, because it seems to indicate that the chemotherapy is having a positive effect. It's hard to ask for much more than that.
From here, we just keep doing what we've been doing. I won't say that I'm back to routine normal: this is still serious and I should treat it as such. Even so, it's much easier to stay the course when you get some positive feedback. Much like my treatment plan on temodar, I'll just continue this chemotherapy and get a check-up in 3 months. I'll keep praying that the chemo is effective and that my system tolerates it as well as I have so far. Life is good!
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| Things progressed as planned from the last posting; I had my first IV chemo treatment on July 27. On the first one they drip it in very slowly to watch for any reactions. The only thing I noticed was that when I ate lunch, I got some light-headedness probably caused by increased bloodflow to the stomach and the fact that I was moving my head around to dip chips in salsa without spilling everywhere. Oh, and maybe I didn't need to eat a Moe's burrito, but I sure was hungry and it was good. The day after, my side effect was strong hic-ups for about 4 hours in the morning. Some light internet investigation revealed that this was is a somewhat common side-effect of large doses of chemotherapy. The rest of the week went well, I just ended up feeling a little more tired than normal.
By recovery week (Aug. 2-8) I was feeling pretty well back to normal. While the needle-work was a little painful the first week, the person drawing my blood for labs did one of the best sticks I've ever (not) felt. That was pretty impressive; I hope that keeps up. At least I was good enough to go to a food tasting for our reception. We didn't figure a perfect menu yet, but we found a few very good choices and we probably could be happy with just about anything: the chef there is very skilled. I'm looking forward to more. This past weekend we also met with our first florist, the reality of this whole wedding thing is really starting to sink in. Still, I think it'll be a good time.
This Monday I had by second treatment. I was only hoping that it could go as well as the last one. The infusion was to be faster this time (next one will be faster yet, and from there it will be stable), and it went well. Needle-work hurt, but this time took only one attempt instead of three to get the IV set in. I slowed down my eating by starting off with a snack back of Fritos. Even with that, I felt a little food coma-like, but not nearly as bad as the light-headedness before. Looks like I'll just have to take in food slowly. That night I was feeling well enough to go to a baseball game with Jennifer and our church. A good time was had by all, but chemo mixing with lots of caffeine gave me a very difficult time sleeping that night. Fortunately, I had some other side projects to work on and finish up. The following day, I had hic-ups again, but this time they were more intermittent and perhaps a little weaker. They seem to come out more when I get up and move about. All I know is that it's very strange. When I finally got sleepy, I slept for 11 hours, which is abnormally high for me. I did about the same this last night, and am starting to feel tired again.
All in all, these sorts of things are to be expected, and these side effects are very minor. I just hope that it will stay like this or better. So far so good! Thank you all for the prayers, they have been working and I will continue to appreciate them.
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Once again, I apologize for the infrequent updates - this one is going to have some shockers. Where we left off I had just undergone my 4th surgery on May 15th. Healing seemed to be going well enough, staples and stitches came out two weeks later as normally scheduled. I then started to swell up on the right side of my head and perhaps felt a little more sore. On Thursday June 11, I woke up with some drainage coming out of the incision in a few places. This drew our attention as it was not clear like pure spinal fluid would be: instead it was cloudy, almost pus-like. We immediately called the hospital, getting through to the surgeon who recommended to come up to the E.R. First, I had an MRI to check and see if there was a buildup of fluid or source of some infection. That looked pretty clear, which verified the surgeon's original thought that it was perhaps the bone that was infected. Regardless, something was causing that fluid to be discolored and pus-like, so it was time to take a look. Things got rolling very quickly and I had another surgery that very night. Very few had forewarning on this one, even Jennifer did not make it up to Chicago before I went in. I had to tell her I was going in via text messaging: how sad. Still, I apologize for not sharing this occurrence sooner.
This surgery I view more as a head surgery and not a brain surgery, since there was no need to cut/remove any brain. The piece of skull that they normally cut out and temporarily remove for brain surgeries was what got infected, so all they had to do was open me up, pull that out, clean up the area and surrounding bone, and patch me back together. Since it was a simpler procedure, I had an easier recovery. The previous one I woke up with "I ache all over" as my mantra. This time, I felt almost no pain. There were other differences, too. I had a brain drain to collect other random fluids that we didn't want collecting in that area. That was weird to just peer over and look at, and boy did it hurt when they pulled it out; it was shaped with a larger lip at the end (think of the pipes from super mario bros) that had to be pulled out through the smaller hole in my scalp that wanted to close around it. My scalp just felt really tight: yeoch! I had some extra stitches put in (without anesthetic) to seal that up and another spot where the incision had been bleeding off and on. I tried to be the zen master and take myself to another place, but I still had to grit my teeth and try to just get over it. Finishing off the infection (which was found to be staph) required the use of some more potent antibiotics, so they put in a PICC line. Well, two, actually, the first one didn't set in just right. Once installed correctly, this made life easier in that I didn't have to get poked with a needle for every infusion, blood draw, etc. and we could take the other IV lines out, saving my veins.
I returned home fairly quickly, I was ready to go on Saturday but had to wait until Monday for set-up of my continued treatment at home: I have stayed on the antibiotics here at home using my PICC line with weekly check-ups from a home health nurse. This certainly has put me on a weird schedule. I am to give myself a one-hour IV infusion every 8 hours, so I end up being on 7 hour shifts for just about anything. Going to/from various appointments has lead me to have to drip on the run: not optimal, but it works. Remember, friends don't let friends drip and drive. I'll be done with these antibiotics this Thursday, I can't wait to get a straight eight hours of sleep. That, coupled with the fact that the treatment can make you more tired has left me in a bit of a funk.
This next week I will be shifting gears yet again: after these delays, I will finally be starting the Avastin/CPT-11 chemotherapy next Monday. That will make it almost three months without having any chemotherapy to fight my more aggressive glioblastoma. I am ready to get this show on the road. Please pray that the drugs will be very effective against the tumor, and that I would have the strength to endure them for as long as I need to.
On to brighter news. Jennifer and I have started working on wedding planning. After some lengthy investigation, we found a venue for our reception that well meets what we had envisioned. It feels good to be making progress.
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| Okay, so I still am not good at this whole updating regularly thing. This is probably largely due the the fact that life has been very busy and active these past few months. Springing from the last post, I did handle the lower dosage of temodar much better. Some times I barely even remembered I was on chemotherapy, I was just taking some extra pills and I never got too sick from them. Overall life has been great. Jennifer came to Minnesota with us for thanksgiving, as though she didn't get enough time with me staying with me through the hospital and recovery experience. Fall semester finished up fairly well, it was busy and hectic as always, but I managed to get all my classes done, exams graded, grades posted, etc.
In November, Matt got a chance to take us up on a checkride that he had from Lafayette in the King Air. He did well, and it was very cool to see him at work and go for up for a little ride. Somehow it's not quite the same as going up for a ride in the cub. The holiday season went well: I tried to make Christmas a little more special this year than I had in years past and upped the ante a bit on what I gave. It absolutely felt good. I would highly recommend doing that again. I've been working the same way with my giving to the Church: go above and beyond what you normally would feel comfortable with, and you end up realizing that you can make it without it. He provides for you in amazing ways, if you give him the opportunity. New years we spent down in Noblesville and shortly thereafter got to be present for the birth of Jennifer's first niece, who was prophetically dubbed my "almost baby niece."
This January was bitterly cold, and amidst some of the coldest nights, we had a visitor at our back door. A gray-striped cat had been dumped in our neighborhood and needed a place to stay. So of course, he adopted us. We had been talking about getting a gray kitty, but I had always said the the right one would show up. Poor Grayson was already front declawed, had very course fur, a very bony body, and a kinked tail. Since blessing us with his presence he has hidden his ribs with some extra weight and worked himself into all of our hearts. He's half outside and gets the garage and workout room for inside space, so he rounds out our cat coverage very well here. Hopefully he'll catch mice!
In March, Jennifer and I got to use our passports and flew to Toronto where we met up with Mom, Matt, and Corrie for a good friend's wedding. Unfortunately, one weekend is not enough to take in all the sights of Toronto and attend a wedding, especially when trying to coordinate between five people. Still, I think a good time was had by all, and we did get a chance to see Niagra Falls. The spirit of love was in the air. When we got back to Indianapolis, I proposed to Jennifer when an opportunity presented itself. I had been waiting in Toronto, but never really had a good chance because we were too busy running around like crazy people. Oh, sorry to delay the surprise - she said YES! So I am now officially engaged and we're looking at perhaps next summer sometime.
Over spring break I had two things to do. First was to work on my research project, which I was getting pretty well wrapped up. Second, I had some time to do some glider flying (that I had signed up for almost a year ago). I was able to go up for a few flights, and with Charlie Holleman's approval, I went for my first solo in a glider! I was so excited, it was amazing. That day there were some things that I had never had happen to me while flying before. It was the strangest thing when I was flying along and I could heard the rumbling and whistles of a train and sirens of emergency vehicles. Of course it makes sense that you can hear it because you're within a mile and there are no objects in between to block the sound, but it was just bizare for what a pilot is used to. I was also surprised at how much lift I was able to find in the afternoon - it was certainly more than I ever picked up in Monticello, but then again, I had more time here. Being lighter probably also helps (alot).
In April we participated in another relay for life, the celebration of where Jennifer and I met. I thought this year went well, too. Mom was most excited about getting to ride in the Boilermaker Special. I think all this things were working together to make the "Purdue Experience" finally complete for us. Speaking of wrapping up the Purdue experience, this April I successfully defended my Master's Directed Project, which put me one step closer to getting that fancy piece of paper. All I had left to go was make sure I pass my own classes and I would be in the clear. It was tough, and distractions came along, but I managed to pull it all together and finish my own classes and the classes I taught, finishing with a 4.0 in Grad School. Sure it sounds impressive, but I'm pretty sure there is some grade inflation in grad classes, since the students are accustomed to being successful and doing what it takes to get the job done. Nevertheless, that's where I stand.
So what were some of those distractions? Well a lot of medical stuff again. It started off fairly easy with an aggressive game of tag and hide-and-seek with Jennifer's cousins resulting in Tim spraining his ankle in a most dramatic fashion. I had never sprained anything before, so this was a good learning experience for me. This mostly just slowed me down, as I hobbled around from place to place. The big kicker came on april 21st, my 5 year anniversary of having the seizure in the Beechjet. It was the day for my routine 3-month MRI checkup. The same growth that we saw from August to October was about the same size from January to April. Remember, this was while I was still on Temodar, which goes to support the pathology from the October sugery that said the tumor type had changed to a glioblastoma. The Temodar seems to have done a good job with all the rest of the bad cells, but it has changed. So again, with the large and rapidly growning mass of tumor in my head, the best first step is to cut it out.
I was scheduled for May 5th, which was the Tuesday of Finals week. That weekend I had to kick my butt to get all my class stuff done so that I could leave on Monday for the pre-check and MRI on Monday. This caused me to miss out on a final presentation for a pseudo-group project. Ooops! Sorry Danielle - hopefully that worked out alright. With that in mind I went the extra mile and did the other random project that was dropped on us with a week to go. Remember, more work does not equal better quality work, but it got done. The short nights probably didn't help, but by Monday morning I was starting do develop a little bit of a scratchy throat, to which we all groan (oh no, not again...see July 28, 2004). As before, I can never seem to get a surgery done on the originally scheduled date. This one was delayed until May 15. So this resulted in more waiting and a crazy caper to try to get me all better by the 15th, but it worked out. Surgery went fairly well, the MRI's look pretty good, I don't seem to have lost any memory or vision. I did get one strange quirk, however. The right side of my cheek, lower lip, and tongue all have a tingly feeling like I bit my tongue/cheek/lip. We think perhaps one of the nerves got interacted with in cutting on that side. I was able to shower and leave yesterday, both of which were true blessings. I am now happy to be home recovering without all the IV's, blood draws, and checking of my vitals.
For those of you keeping track at home, Purdue Commecement was Sunday the 17th, so once again I had my own version of a cap and gown. I am officially done with school for now (and I'm not too antsy to work on that doctorate) and looking forward to moving on with life. The next main step for me is the new type of chemotherapy. Of course the current tumor cells are not reacting to the Temodar, so after getting some time for my head to heal, I will be starting on some of the more hardcore IV-drip chemotherapies. Here's a quick link; no guarantees on the quality.
So what are my plans for the next few months? That's a good question! First, I'm going to try to recover and see how well I handle the new chemothearpies. Second, since Jennifer is smart enough to be able to find out how to get a job, I am going to try take the lion's share of wedding planning. My Master's Committee Chair and I also are pursuing a unique opportunity that we might be able to get started up here in Delphi or Lafayette. I'm really excited about it as it blends my love of light-sport aviation with good will and elements of Jennifer's profession of adapting disadvantaged people to normal life. I guess they contacted his wife, and we're going to try to pursue it. Read about it at http://www.ableflight.org/ and pray that everything works out. I think it would be a lot of fun, a good use of my skills and background, and be a good opportunity and maybe starting point for me to do some business with light sport/tailwheel instruction.
I think that's all I have on my mind right now: remember there is less of it so a couple of little paragraphs is probably all the oomph I have left. Feel free to contact me individually with comments, questions, and such. I love hearing back from everyone. I hope eveyone has been having at least as good of a year as I have.
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| This past Thursday I started chemotherapy again. I'm on the same drug as I was before - Temodar - but we're going about it differently this time. Last time I was doing monthly cycles of 5 days in a row with 380 mg (If I remember correctly) each, then waiting the rest of the month for my blood counts to come back up. This time we're doing a lower dosage, 140 mg for 21 days with weekly blood draws intertwined in the cycle. I get to rest for 7 days before going back to it. Even here on day three I'm already starting to notice a few of the effects of it. Fortunately, it's not making me nauseous yet. I hope the lighter dosage keeps that down for a much longer time. I'll be in serious trouble if I start to get sick on days 4 or 5 of a 21 day cycle. One of the other side effects I'm noticing is that I've been a bit grumpier the past few days. The other question that I don't have the answer for is "how long will I be on it?" I can only guess it will be 24 months, like last time. Oh joy. The side benefit is with me getting up early in the mornings to take the pills and let my stomach settle is that I make time to get work done where I wasn't earlier in the semester. | | |
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