Marks Melon

Final Sunset 11/11/10

2010-11-13T14:18:00.004-05:00

This photograph was taken at sunset in Crystal Beach, our home and one of Mark's favorite locations to take pictures. The day was 8/23/06, and he had just been diagnosed with a brain tumor. Our smiling faces are deceptive because there was an air of fear and uncertainty of what the future held. He didn't know how much time we had left together as a couple. I am so grateful that he was given an additional 4 years, 2 months and 19 days to live after this moment was captured.

Although Mark's life post-diagnosis was filled with surgeries, chemotherapy, radiation treatments and countless side effects, he was able to have some enjoyable experiences as well. One of his favorite outdoor pastimes was riding his trusty "hog" as he called it - a shiny red recumbent tricycle.

Besides having me as his caregiver and wife to keep his spirits up, Mark had his beloved cat "son" Karl as a constant and loyal companion. They were kindred spirits. Both battled disease with strength and dignity at such an early age. Sadly, Karl could not bear to witness his Dad's decline, and he preceded Mark in death by just 13 days. Now the two of them have reunited and crossed the Rainbow Bridge. The sunset is behind them, and better things are to come. We mortals that are left questioning why can find some solace in the belief that my two precious boys are watching over us. They patiently wait until the day we will all be together again.

10/27/10 - Health Update

2010-10-26T15:25:00.004-05:00

"We're in real pickle, George!"

That's a quote from one of my favorite movies... As a bonus, comment and leave what you think that movie is! [Bonus disclaimer: no reward other than the satisfaction of identifying the movie, :) ]

Well, I've been in "real pickle," for the last month! Short story, I fell down and broke my my upper humerus (shoulder), leaving me with one usable hand, my left one. I started another course of Radiation Therapy, and then had severe lower back pain. The worst pain that I felt was fifteen out of ten, even on pain killers!

Besides that I had had (still there) excessive hiccups and they increased my pain in at least two ways. First, they hurt a lot! The jolt from them affected just about anything connected to my thoracic compartment (torso). They felt like being stabbed in the back, and being hit in the lungs with a cattle prod! The hiccups also occurred throughout the night, causing acid reflux (more pain) in throat.

So, I had lower lower back surgery last Thursday to help alleviate my pain, which is slowly getting better.

The pain pills have NOT helped me, so to alleviate their dreaded side effects, I have stopped taking them. In other words, I would rather deal my pain, then deal with with their side effect... Really! :)

I'm currently still on radiation and chemo treatments. My pain has improved slightly, but now, I just have to wait and tolerate the pain. Lucky me! :)

Comments and Emails are very much appreciated, but don't expect me to reply anytime
soon! :)

I updated my calendar, too!

06/25/10 - Journey, Accident, Repair, Rescue - Part 4 (of 3!)

2010-08-26T12:49:00.008-05:00

Posted 8/26. What? Part 4 of 3! I just added this part to put up a few more pictures on my blog... :)

My bicycle computer said that I rode a total of 10.43 miles the day that the sidewalk punctured my tube, up until I was "rescued." My GPS said the trip was over 17 miles, but I had it on in Northern Tool (during which it lost satellite signal MANY times), and it was on after my "rescue" which likely added about 5 miles. I might have walked about a mile in Northern Tool as I searched for repair options...

My bicycle computer, after the "accident" ride
The toolkit that I ordered after the accident, allowing me to repair almost anything on a bike, yet it still able to roll-up into a fairly small package.

There are many tools in the kit that I ordered...

Despite containing many tools, the kit still rolls-up compactly!
How did I know this stuff? From my father. For most of his career, he was an auto mechanic. He also worked on cars and motorcycles at home. He restored many of them. When my brother was a teen, he restored many vehicles as well. In comparison, a bicycle is easy!

Here's photo that I recently found of a bicycle that I rebuilt in the summer before my junior year (1990) at Penn State. I lived nearly two miles from campus, so I rode this bike a lot. It was a very convenient way to get around. In the picture, I was out "exploring." In the background, you can see Mount Nittany, which is the namesake of our mascot, the Nittany Lion. :)

My college bicycle, some where near State College/ PA
More updates to come...

06/25/10 - Journey, Accident, Repair, Rescue - Part 3 (of 3!)

2010-08-25T22:12:00.014-05:00

Posted on 8/26. :(. QUITE delayed... I had other tasks that I made a higher priorities, which stretched into... Oh, I have SO much catching-up to do on my blog! Again making it more of a monumental task! Now I'm beginning to play catch-up. The calendar on the right below is always updated pretty quickly, because it is a much easier task to do!

The front wheel of my hog, revealing some of the temporary repair
On with my hog (recumbent tricycle) repair. First, I had to remove the front wheel from my hog. Next, I had to remove the tire from the wheel. As I removed the tire, I also pulled out any of the tie-downs that I used for the temporary fix. The tie-downs themselves had a center core of metal wire surrounded by a red foam tube with yellow plastic end caps that were intended to hold each tie-down together.

The excessive wear and tear of being used pseudo-inner tube broke off most of these plastic caps which wore away some if the inside of the tire. Luckily, the tire itself was not punctured as a few of the ties' inner wires were extending quite a bit from the red foam tubes. The wires, broken caps, and remnants from the worn inside of the tire can be seen in the picture below.

The old inner tube was beyond repair because of its long punctures (exacerbated by my riding on it and turning) before I had to institute the temporary repair at Northern Tool. I still used it as both a tube protector (I used it as an extra layer of rubber in between the new tube and the tire) and to patch the spoke guard (upcoming). I know that you can't wait to hear about it! :)

Various inner tubes, and the temp fix
Is that baby powder in the picture above? Why, yes it is! The baby (talcum) powder is used as a dry lubricant to help install the new inner tube and to allow the tube to seat properly. It helps to partially inflate the new tube as well to ease both applying a coating of talcum powder, and inserting the new tube into the tire.

The bare wheel sitting on my shed workbench
Upon inspecting the wheel's rim, there was a small dent (ding) in it before inserting the new tube, to any damage from it. I'm sure the ding occurred from hitting that break in the sidewalk that caused this whole incident. This ding was on the seam of the rim, which is a weak point. I straightened the ding with pliers and then sanded the rim, so that it was smooth on its outer and inner edges.

The bare wheel sitting on my shed workbench
The next step in this seemingly endless repair (it only took a good part of a day), was to address the tube protector/spoke guard. This is like a giant rubber band that protects the inner tube from any sharp edges on the spoke nuts. The spoke nuts look like screws from inside the rim, but their threads are internal, like a nut. The ends of the spokes actually have mating external threads, so can loosen or tighten each spoke to "true" (straighten) the wheel. I noticed that the tube guard was about to snap apart while I repaired the rim ding. The tube protector was rubber, I was able to patch where it was about to break apart with a piece of rubber trimmed from the old, punctured inner tube. The patch on it worked well!

After that, I reassembled everything. I installed the repaired wheel, the tire, and the new inner tube. Done!

My hog repaired, the time on this picture was 7:07PM!
The repair was completed on Thursday, July 8th. It was my goal to have it fixed by the following day, so I could take it for ride...

06/25/10 - Journey, Accident, Repair, Rescue - Part 2 (of 3!)

2010-07-11T21:43:00.016-05:00

Started 7/11. Start of the repair. I wandered around Northern Tool (NT), to see what they had. Repair option 1: replace the inner tube (the easiest option). They did not have ANY 16" tubes, although they sold entire 16" wheels (spokes, rims, tubes and tires) for utility use such as carts, etc. In hindsight, I could have saved a lot of time buying an entire wheel, taking the tube out, and replacing my hog's front tube. That would have been a much higher-priced option, too...

My hog, awaiting repair on Northern Tool's sidewalk
Repair option 2: Patch the tube (not difficult, and probably the least expensive option). NT had some patch kits, but I initially skipped that option, because I suspected that the tube was damaged when I turned my hog and first noticed the flat...

Repair option 3: Make a small, wheeled platform, to strap beneath the damaged wheel. I gathered and purchased the least expensive parts to accomplish this. Along with basic, cheap hand tools, this solution still cost $35+ I walked out of the store to my wounded hog, and thought that there must be a cheaper way.

Repair option 2: Patch the tube. What, heading backwards? Well, I was highly suspicious that the tube was beyond repair, but I figured that I should at least take a look. I returned all of the parts from the cart/dolly solution, and bought the tube patch kit that had the largest patches.

When I took the tube out, my suspicions did come true. There were cuts in the tube too large for the patches in the kit to repair... Big holes aren't reliably patched, either. :(

Repair option 4: replace the tube with high density foam or a strong, appropriately-sized tube. Back to wandering around NT again. I'm not the most graceful walker since my operation and treatments. Off-balance, slow, and not used to walking far. The employees of the store surely wondered, "what is wrong with this guy, and why has he been here for hours?"

After browsing through the store for a while, I discovered a product that might do the job. A type of tie-down. They were basically 17" long, steel wire surrounded by medium-density foam with plastic end caps to hold them together. They are almost 1/2" in diameter. They are packed in groups of 4 for $5. Ten dollars later, I was out of NT (once again) with 8 of them to attempt option four.

Repair option 4: fabricating a pseudo-inner tube
Around this time, I took a quick break and ate an exotic lunch, A Snickers bar that I had bought at NT. How exciting!

Option 4 nearly finished, note tie-down package on the ground

Option 4 result, fairly decent for a temporary repair
Once installed, option 4 looked like it would work. In actual performance it worked pretty well, with one issue... My attempt at the "ideal" placement of the tie-downs failed as their was a "flat spot" on each wheel revolution, basically a "clunk" you could feel once every time the wheel completed a full spin. Annoying and probably caused premature wear on the tie-downs, but at this point my main interest was riding home, ASAP! It wasn't surprising that my placement of the ties was less than ideal, as they were wedged into the tube's space...

I rode about 3 miles back toward my house before contacting Laura about my "situation." I would have ridden all of the way home, but Laura was concerned about my potential late arrival (7:00PM+ ?) and my limping hog. I had to enact my "rescue" plan. Laura's car is a VW beetle (too small for the hog) and I temporarily don't have one (I don't drive anyhow due to my health and risks). First, I asked her if our neighbor was home (he has a pick-up truck), unfortunately, he was not. Then, I called a friend and former co-worker. By that time, it was very close to 5:00PM.

I was surprised that I caught Mike still at the office. If he were at or close to home, I would just call the next person on my "list." Lucky me he was still at work, unlucky him :(. He agreed to come and pick me up, as well as my hog. He has a smaller SUV, a Honda Element, but it has a lot of configuration options. As he wrapped things up at work and got on his way, I just kept pedaling...

As Mike got closer, I chose a convenient place for him to pick me up (actually the parking lot of Michael Baker's office which I had visited earlier that day). It is noted by the red triangle containing an explanation point on the GPS track shown below in part 1 of this this post. When he arrived, he was able to fit my hog into his vehicle by adjusting a few items. After that, he took me home (about 5 miles). I was grateful, but Laura was even even more grateful and happy that I wasn't limping home on my hog. Thanks again, Mike!

Waiting for my rescue
I guess there is a moral to this story. Be prepared for the unexpected. Luckily, my accident occurred near a hardware shop. I did not have any tools or supplies on me, :(. I was ill-prepared in that respect. The first items I ordered on the internet when I got home were basic bike tools.

Part 3 of this post will have details about the repair after I got home. Yes, I did wait about 10 days before repairing my hog! I didn't want to see it for a few days, and the other delay was waiting for parts I ordered on the internet to come in.

Oh, in real time, it is now 7/13... :(

06/24/10 - Journey, Accident, Repair, Rescue... Part 1 (of 3!)

2010-07-05T11:10:00.014-05:00

Started 7/5, posted 7/7. First of all, I was NOT injured (maybe my pride), but my hog was, cutting my journey short. Oh well, the full story to follow...

GPS track of my full journey, click image for larger view
Before I started, I did have a potential destination, but early-on my goal was to see an orangutan (at the Chimp Farm) before 9AM. Very difficult to do when you leave the house around 9:55AM, :). I did see that orangutan and several chimps by 10:22AM, however. Not that I'm bragging, but I bet none of my readers has seen an orangutan that early...

Orangutan, he is a big boy...
Onward! I headed further North on the trail. I was able to talk to my brother on my cellphone as I rode along, which was nice. Why was that special? Before I left the house (one of the reasons I didn't leave until 9:55), I made an experimental "wind screen" for the microphone on my cell's headset. It worked very well, as I could talk and ride, and he heard no wind noise at the other end...

I stopped at an office just off of the trail on my way North. It was Michael Baker Planners and Land Surveyors. I thought they might have some relation to a Michael Baker Engineering building at Penn State Beaver Campus, where I started college. According to their receptionist, there was no relation, and people had posed that question before.

Michael Baker's Office
Back on to the trail. I reached its northern extent and transferred to a sidewalk that paralleled "big" Route 19. At that point, Rte 19 is at least a 6 lane highway, but it has traffic-light controlled intersections every few blocks. Ironically, it was just a couple of miles from my apartment in Pittsburgh (after college), and the same road is just a couple of miles from my house in Florida.

The sidewalk is where my journey went kind of bad. A pedestrian was approaching me head-on, so I slowed-down and focused on where he was. Unfortunately, I took my eyes off of the sidewalk's surface. The sidewalk had a large hole in it, which stopped my hog very quickly. Luckily because of the pedestrian, I was only going 1-2 mph. The sudden stop made my chain pop-off its front sprocket, but I thought, "At least I don't have a flat tire." A few minutes (and photos) later, I was on my way with two greasy hands and a reseated chain.

The broken sidewalk, note linear scrapes on concrete, likely evidence of other victims
Another minute later, I made a right turn towards Northern Tool, one of my destinations. As I made the right, my front tire slid, it was flat. I thought that turn may have severely damaged the tube... Luckily, Northern Tool was close, so I pushed my trike there. Once there, I locked my hog to a trailer on their shaded side walk and went into the store...

Northern Tool from where the "accident" occurred
Will my hog be repaired? Will I make it home? Stay tuned for Part 2...

06/23/10 - Radiation 5.17

2010-07-05T00:28:00.002-05:00

Posted VERY early on 7/5. My 17th and final treatment in series 5! As usual, non-eventful, which is good! I am scheduled to follow-up with my Radiation-Oncologist on July 15th. Series 5 was meant to treat my L4 "lesion." I still call it a Lesion, because my doctors at Moffitt referred to it in that way, but in simpler terms, I believe it was a spread of cancer to my L4 vertebra (bone) in my spinal column. It was also suspected to be the main cause of my sometimes severe lower back pain. No one will no the true effect of the radiation until I have MRIs on July 22nd. In the meantime, the back pain is nearly gone, so that is a good sign that the radiation treatment was effective.

My tumors have so far been sensitive to (eliminated by) radiation treatments. The next step may very well be more radiation treatments focusing on a different area, or chemo. I'll most likely find out around July 22nd.

06/22/10 - Ride, Radiation 5.16

2010-07-04T23:58:00.000-05:00

Started 6/27. Seriously, I want to post more often to keep readers interested, but I have many other things to do. So, I will try to post about something at least once per week, hopefully more often! See, I already went rogue :), The true (post) date is now July 4th! As you can see from the above note, I started this post a week ago..

On Tuesday, 6/22, I went on a trike ride for fun and exercise and to visit a local business, Britton's Archery. Unfortunately, Britton's was closed when I got to it, because it has limited hours. A good reason to call before you go, especially if you are riding a bicycle/tricycle on a very hot day. No worries - I was going to ride my "hog" anyway...

My ride as a GPS track, 7.1 miles
So, I decide to head home sort of early, but I wanted to explore other businesses located along Alternate Route 19 (Alt 19), especially restaurants! I hadn't eaten lunch yet, and it was around 1:30PM. I just wanted to sit down and eat casually somewhere...

I stopped in at a consignment store because they had a 3-wheeled jogging-type of baby stroller on the sidewalk in front. I just mentioned in a comment (on the post titled 06/11/10 - Roofing, Riding, Radiation 5.9) "shopping cart" therapy - that pushing a shopping cart stabilizes me, supports me, and helps me walk better. So, I thought a jogging stroller would do the same... As a plus, the one at the shop had a handbrake for the front wheel, and "parking" brakes for both rear wheels, aditionally it folded-up. I was going to fabricate (make) one, but this one had a fair price, so I bought it.

My attempt to tow the jogging stroller
At the time, I only had a bungee cord in my rear basket - so, I used it to secure the "jogger." As an extra safety measure, I tied a nylon strap from the jogger to my trike frame. This attempt functioned poorly, whether I attached the jogger's front or rear wheels. The jogger bounced around excessively, and its wheels interfered majorly with the rear wheels of my hog.

Luckily the shop owner had an errand to run, and she said that she would deliver it to my house in her SUV. Phew!

I stopped on the way back to my house at the Chimp Farm and had a quick lunch of an energy bar and some water... The "casual" lunch would have to wait until another day. Surprisingly, I beat the shop owner to my house, but she had stopped at home to pick up one of her kids...

A semi-quick lunch break

Why a jogging stroller versus a walker? They make four wheel walkers with a handbrake and a place to sit if you get too tired. But the tires are too small for extended outdoor use. Hence the jogger. I will use it just to walk for now, maybe slowly building up to jogging (I "ran" in a 1 mile race nearly 2 years ago, needless to say, I ran through MANY front yards to avoid running people over on the street - I was like a 175lb wrecking ball).

My departure ~12:30PM

My return, sweating, ~3:00PM
Radiation 5.16. A couple of hours later, Laura took me to my next to last treatment in radiation series 5. No strange extra happenings, as usual... :)

06/18/10 - Radiation 5.14

2010-06-19T04:13:00.003-05:00

Radiation treatment 14 of 17 was again uneventful, as expected. The radiation treatments have had their desired effect of gradually reducing my lower back pain, due to my cancer. The pain is still there, but it has decreased each week.

Of course, the main reason for the radiation treatments was to eliminate cancer in my L4 vertebra of my spinal column (bone). The reduction in my lower back pain indicates that it has been successful. I won't know the full extent until MRI images are taken and evaluated at Moffitt on July 23rd.

At this point, only 3 radiation treatments in this series remain!

06/11/10 - Roofing, Riding, Radiation 5.9

2010-06-18T21:38:00.012-05:00

Posted 6/19. I'll start earlier in the day on this post. Recently (6/7,6/8), we had our roof replaced by Arry's Roofing, who did a very nice, quality job. On Friday, 6/11, they called around 11:15AM to say what our remaining balance was. We could pay it by check (U.S. mail), or by credit card (a visit to their office). I wanted to pay by credit card, as I get points, which add-up to cash-back. :)

Since Laura had to work until 4:15, their was no other way for me to get there besides my hog (recumbent tricycle). Even though I had significant lower back pain at the time, I was actually looking forward to getting out on my hog.

Luckily, the Pinellas trail is just blocks from our house. It is a paved, former railroad track, part of this country's Rails-to-Trails initiative. Nice, and convenient for us. Long story short, after lunch and other preparations and delays, I did not leave until around 1:00PM. Knowing that it usually takes me at least 45 minutes to get ready for radiation, and we typically leave at 4:55PM to make it to my radiation on time. I knew I was pressed for time...

Fortunately, Arry's is also VERY close to the "trail" as well, but I had never been there, and was relying on directions from an Arry's employee. Big mistake, I should have at least looked at a map or Google Earth before I left. The below GPS track (green) shows my full "journey" on Google Earth. Notice the loop at the top of the path...

My full journey, click to enlarge
Yes, the loop at the top of the path is me searching for Arry's. When I was close I called them multiple times for directions, which I, admittedly, misunderstood multiple times. I'm ashamed to say that I had a GPS clipped to one of my belt loops. I didn't think to use it, because on my trike, I use it mainly to track where I have been, not to navigate. My cellphone also has a GPS, but they charge for navigation. "Lost" with TWO GPSs - ironic and my own stupidity at the time...

My full journey
Since I was in a rush, I didn't stop to take many photos, the following shows the Pinellas Trail as it goes through the town of Tarpon Springs. As you can see, Tarpon Springs has done a nice job of landscaping it.

The trail through Tarpon Springs
Prior to that photo, I stopped at the "Chimp Farm." It's now called "The Suncoast Primate Sanctuary," but I still prefer its old name of the "Chimp Farm." The chimps were making noise, so I had to take a couple of videos. The video below is edited down to 12 seconds from 1+ minutes, mainly to use less memory. Sorry for the shaking, but I had the camera zoomed-in, which only increases the effect. I took this video on the way TO the roofers, and you can here me saying, "I must be moving on," since I was in a rush... Yes, I had to listen to it a few times before I figured out what I was saying! I sub-scripted it in the video.
Chimp Farm Video
I left Arry's around 3:43PM. I knew that I had to scramble, so I pedaled as fast as I could. About 3 miles from home, I was exhausted. It was hard to muster the strength just to put my left foot on its pedal - approximately 6 inches from the ground - pitiful... Why the exhaustion? Many factors, the biggest being over exertion. I continued, nonetheless.

So, when did I get home? I was about 4:44PM. Although Laura was supposed to work until 4:15, she got stuck on the job and got home around 4:45PM. Lucky for me, I had a chance to slip into the house before she got home. Unfortunately, Laura "busted" me as I was nearing the top of the stairs to our house as she pulled her car in. I went in the house and jumped into the shower (OK, I got into the shower as quickly as I could, if I were to jump, I would very likely fall down). I took a very quick and cold shower, it felt good since I was just riding my hog in 90+ degree weather!

I was ready by about 5:05PM (again Laura insists I be ready by 4:55PM). We actually made it to my radiation appointment on time! Radiation treatment 5.9 went well. So, it all worked out in the end. In the days to come my leg muscles were sore, and my back was likely stiffer than usual, but nothing I couldn't handle.

The ride on my hog - it was just over 10.6 miles according to my GPS. Can't wait to do it again when I don't have to "rush!" :)

06/03/10 - Radiation 5.3

2010-06-13T15:41:00.006-05:00

Posted 6/13 - I'll rate myself "poor" on this post for being slow... Radiation 5.3 was typical, but two of the Radiation Therapists(RTs) did take a little extra time to take a few photos of the process. Anyone hat knows me knows that I love photos, I especially like to post them on my blog to help break up seemingly monotonous text and help to better explain things. The following photos were all taken by RT Lynn, with impromptu "model" Chief RT Andrea.

Me on radiation treatment table
(Above) Me positioned physically on the treatment table by lining up lasers with my tattoos by the RTs. Note that this is actually one step beyond alignment as the table is raised to align with the radiation machine.

Me on treatment table, Andrea in background
Once raised to treatment height, the table is pretty high, as it becomes apparent with this view of Andrea in the background. Of course it does lower to load/unload me.

Andrea controlling the radiation machine
Andrea controlling the radiation machine, just outside of the treatment room. There is a heavy, foot-thick door that closes when the therapists leave the room to protect them from any stray radiation. I'm still in the room. Maybe that's why I glow at night... :) Actually, I don't glow, but I wonder if a sensitive Geiger counter would detect any radiation when held to my spine? Laura has probably asked in the past if it has a "Tazer" setting...

Video of me in radiation room
This video is used to track if anything goes wrong during treatment - if I start moving around or dancing, whatever. Apparently, it is closed circuit TV. Unfortunately, it is not piped to the local TV station.

Thanks again to Lynn and Andrea, for creating these photos!

06/01/10 - Radiation 5.1

2010-06-05T20:42:00.003-05:00

Posted 6/5. New notation: Series 5 (the fifth time I have received radiation treatment), Session 1 (the first of 17 radiation doses I am scheduled to receive). The number of treatments is adding up, so I created this notation to help myself and anyone else to keep track of them...

I didn't have any pictures taken at the session, because it was a little longer than normal as it was the first one. The radiation technicians made sure to place me accurately, and add pen marks and new tattoos to my lower back. Thanks Rick and Nancy!

Actually, when I did get home later that evening, I asked Laura to take pictures of my lower back. There were a LOT of blue circles around old and new tattoos which the technicians did during the session. I don't know which tattoos are old and which are new, although I could take an educated guess... They will appear as tiny blue "periods" (.) when they heal.

My lower back, targets and tattoos are circled in blue
Other than being about twice as long as usual (still relatively quick), radiation 5.1 went well.

05/30/10 - 5/31/10 - Emergency Room Visit, Pleurisy?

2010-06-01T20:34:00.008-05:00

Posted 6/4. Late Saturday (5/29) afternoon, I had a pain start in my right-chest area. It wasn't so bad, so I just dealt with it. That all changed as it kept worsening throughout Sunday. I didn't tell Laura, as I could still tolerate it, and it was now near bedtime and I didn't want her to worry all night.

She fell asleep quickly, and I still watched TV a little bit. Upon laying down in bed, I felt what was now a very increased sharp pain in my right chest, especially when I inhaled. The deeper I inhaled, the worse the pain got. I could no longer tolerate it.

I woke Laura up, and said I needed an ambulance. We went back and forth for a little bit, and decided to take her car to a nearby hospital. We went to the Emergency Room (~10:30PM), and I was quickly admitted (I guess "experiencing chest pains" speeds things up quit a bit :) ). Just as quickly, my veins were accessed via an IV and around 5 external patches were adhered to my chest.

Before I knew it, blood was drawn to test for various enzymes, cell counts and bacteria. The patches on my chest were attached to what I assume was an ECG (Electrocardiogram). I should've asked... A technician came in and took an X-Ray of my chest... I was also put on supplemental oxygen...

By this time, it was around 2:00AM, and things started to slow down a bit. I told Laura that she should go home to get "some" sleep (she left before 2:30). I was given pain medication around 12:30 and 2:30, they helped, but I could still feel the pain. Oh yeah, before Laura left she took a picture of me with my cell phone (it did not come out), and she was "reprimanded" by a nurse about taking pictures. I didn't realize it was a secret. This entry is too far along for me to stop...

Sometime around 3-3:30AM I had a CT (Cat) scan of my chest scan. It was specifically to look at my heart, and I'm sure there were other features of the scan, so it was called an "angiogram." I'm pretty sure that is what I was told, but my spell-checker suggests "cardiogram." I just looked up both quickly on Wikipedia, I'll stick with angiogram for now...

Not long after, I was admitted to a private room. Sleep, Blood Draw, Sleep, Blood Draw, Sleep, Talk to Cardiologist, Sleep, Call Laura and tell her not to come until around noon, Sleep, Eat Hospital Breakfast after 11AM while watching "The Price Is Right," Laura Arrives (~noon), Eat Hospital Lunch (~1:00PM), Cautiously take pictures, Wait.

Me in hospital bed ~1:00pm, Memorial Day (Monday)

IV in my arm
My PCP (he was my PCP-Primary Care Provider, on my old insurance, now he's probably my primary Doctor, or whatever my current insurance says) came in sometime after 4PM. He suggested I had,"Pleurisy" an inflammation of the outer lining of my lungs. He prescribed some steroid-based medication to be taken in decreasing doses over the next six days. He also released me from the hospital which also was a relief because Monday night was rapidly approaching.

My first full day of taking the drug was Tuesday. Six pills throughout the day. That first day's dose almost eliminated the sharp pain. The next day, I took 5 more pills, Pleurisy be gone! And so it was... I still have to take doses 3-2-1 over the next few days, but so far, it has been a great relief! Oh yeah, I started Radiation Tuesday night...

A few facts about pleurisy (from Wikipedia). It has many causes, regrettably cancer is one, :(. It can easily lead to pneumonia and death... Benjamin Franklin died due to pleurisy. In 1973, Elvis was diagnosed with recurrent pleurisy. Ringo Starr had chronic-pleurisy when he was 13. Sleep is good to overcome Pleurisy, which I shall now partake of since I woke-up at 5:00AM...

05/26/10 - Radiation Simulation

2010-06-01T12:16:00.006-05:00

Posted 6/1. Last Wednesday afternoon, I had a radiation simulation, my fifth one. Seems like I just had one (3/25/10)! Below are some pictures of CT ("Cat") Scans, in progress... Click on any picture to enlarge it.

My lower body protruding from CT Scanner, blue arrows point to marks on my skin
CT scans are used to line up external marks to internal areas, such as my L4 vertebra, which is due for treatment by this round of radiation. This way, the radiation technicians can accurately position my body for treatments in the future. The radiation machine also takes a couple of X-Rays to more precisely position me at each treatment, in between when the techs leave the radiation room and the actual radiation treatment begins.

My upper body protruding from CT Scanner, blue arrows point to marks on my skin
During the simulation process, the technician draws several plus signs (+) on me for markers. For this simulation, I know that the tech marked the first "+" on a tattoo (a small, permanent dot) on the skin above my lower spinal column. The tattoo was created at my last simulation. After that first mark, lasers were aligned, and I had two more reference marks placed on my sides in blue pen.

Reference BBs (fiducials), that were stuck to pen marks (+ signs) on my body
Before my final CT scan, the tech placed little stickers on each of my three plus signs, or reference marks. The stickers have a metal "bee-bee" on them an they are placed so that they line up with the plus sign center (think cross-hair). The BBs show up as bright spots on the CT scan, referencing the marks on my skin to my internal anatomy. Voila! The simulation is done!

05/25/10 - Radiation Oncologist Visit

2010-06-01T10:31:00.003-05:00

Posted 6/1/10. Today, I visited my radiation oncologist to find out his strategy on treating the "ugly" portion of my MRI from 5/20/10. Unfortunately, he can't just set off a "nuclear bomb" at the base of my spine to take care everything at once, :(. Treating all of the "bad" areas would be too much radiation for me at once.

My "L4 Lesion" amongst other tumors...
My radiation oncologist is going to focus on treating my L4 lesion right now, for two main reasons. First. the L4 lesion is pretty much an anatomically isolated structure, it is one vertebra of my spine, physically separated from other features (for example treating tumors on/in my spinal cord, would involve at least two items, my tumors and my spinal cord).

The second reason for treating the L4 area of my spine first is that it will likely end the lower-back pain that I have been experiencing for several months now. We'll see how it goes...

05/26/10 - The Good, The Bad, and The Ugly... Part 2

2010-05-26T21:07:00.004-05:00

Wow! So many comments referring to Clint Eastwood's movie (started by Carson), I just had to put-up a poster from the original movie...

Movie Poster
Maybe I should paste my face over Clint's? Not now, too many other things to do! Although I do need to see that movie again...

Hmmm... I've had two medical appointments yesterday and today. I will get to posting about them, hopefully tomorrow!

05/20/10 - MRI Images (aka - The Good, The Bad, & The Ugly)

2010-05-24T08:16:00.015-05:00

Posted 5/24. Before I go on, here are images of basic spinal anatomy (thanks, Wikipedia). Hopefully they will help you identify the areas of the spine that I am referring to. The letters/numbers are standard Medical Terminology (aka Doctor Speak) that determine specific vertebra in the spine. Again, click on ANY picture to enlarge it.

Basic spinal anatomy
Last Thursday, I had MRIs taken at Moffitt. I have basically been having them done every two months to track my disease for the better part of the last year. This time was special, though. I got to see the results of radiation treatments to my T5/6 tumor on my spinal cord. The results (shown below) were great! The radiation seems to have completely eliminated that tumor! :)

The Good - Radiation seems to have eliminated this (T5/6) tumor!
The "good MRI image" shown above was an exception to the other MRI images... The next one showed that my L4 "lesion" was getting worse, and there may be a lesion starting to grow on my L2 vertebra. :(

The Bad - L4 lesion and potential "growing" lesion on L2
In the next MRI Image, I have labeled the five areas that are "not so good." They are all visible in the image, except for the potential L2 lesion which is shown above. No wonder my lower back hurts! 8(

The Ugly - A lot of activity is going on in my lower spine
So what's next? I am going to meet with my radiation oncologist tomorrow afternoon to see what radiation treatments he will recommend. About two weeks ago, he already recommended treating my 3(?) T12 Tumors, I guess I will find out tomorrow what else he may treat...

Some more information about my L4 lesion. It puts me at greater risk of a vertebral fracture. Radiation treatment could increase this risk. I may have to get spinal surgery, even rods implanted in my back, to resolve this problem. Once again, I'll find out more tomorrow. :)

05/20/10 - Moffitt Post

2010-05-20T12:22:00.008-05:00

Aaah! The device I'm using to create this post is difficult for me to use... Waiting to have MRI scans performed at Moffitt. I will try to add more when I get home... 2 reasons - I don't know when I might be called, and I am not used to this device! Oh well... :)

**** Begin PC Edit ****

That "device" was my Nokia N810. All the features of a more intelligent cellphone (smartphone), but it only has wi-fi, NOT cellular service. Like the Apple iPhone without the phone (it can make internet phone calls). I think it is better than the iPhone, because it doesn't have a proprietary operating system, and every "app" that I have seen is free... I bought it to learn Linux, but it's small size makes it hard for me to hold and type on it. I still like it though, and many people (including me) say that it beats the iPhone... :)

My Nokia N810
**** End PC Edit ****

05/07/10 - Paradise...

2010-05-10T09:42:00.023-05:00

Posted 5/10/10. Last Friday, I rode my "hog" (recumbent tricycle) down to our Post Office to check on a package (it was there, but the Post Office did not notify me). Being close to the water (Gulf of Mexico), I rode down to it to take a few pictures.

It seems as though the summer has arrived early. High humidity and temperatures in the high 80s. I'm sorry if you desire that, and your weather isn't complying. A lot of the U.S. is having terrible weather right now, as well as other parts of the world. I guess I'm lucky there... :)

Anyhow, it was a beautiful day (around 11AM), so I took a few photos...

Looking west from the old Crystal Beach boat ramp, click to enlarge
Sailboats moored offshore to the southwest
My "hog."
An Ibis, the mascot for Miami University, which is about 5 hours south of here
My goal was to put up pictures as above. Unfortunately, I spent a LOT of time experimenting with slide show options that seemed intuitive at first, counter-intuitive next, and low quality at the end. I thought it was a good option at fist but returned to my usual practice after a few hours... Losing that time did aggravate me, but not for long...

05/06/10 - Radiation Follow-Up

2010-05-09T16:15:00.002-05:00

Posted 5/9/10. I met my Radiation Oncologist last Thursday for a follow-up appointment. My last dose of radiation was performed on 4/15/10 (3 weeks ago), and radiation treatment will still have effects EASILY one month out. Hence the appointment...

I will get an MRI of my brain and full spine in about two weeks from now on May 20th, that will show a lot more details of what has occurred over the last several weeks. In the past, my tumors have been eliminated by radiation, and I will hopefully have the same results this time.

The follow-up was mainly to see if I had on-going, bad, new, or stronger side effects. I still have lower back pain, and (realizing a lot of people experience it), I'm not sure if it's "normal" or due to my tumors. My Radiation Oncologist suggested that he will likely radiate lower on my spine, where three (plus?) smaller "not as critical" tumors currently exist. I agreed with him to not perform this treatment until MRI results are back...

T12 3(?)Tumors, older MRI on the left, newest MRI on the right (click to enlarge)
Basically, it is difficult for me to detect gradual changes for my body, so everything seems to be status quo at this point until I receive the MRI results on the 20th.

04/26/10 - Blog Update

2010-04-26T10:43:00.002-05:00

I haven't been posting for a while because I prioritized other "tasks," but I should get back to it this week. I will start by answering recent comments (within the past few weeks), so if you left one I should reply to it soon! Time limits stress me out (if they don't get to you, I think you may be unique), so that's why I tend not to specify them... :)

04/12/10 - Tiredness...

2010-04-12T18:44:00.003-05:00

Snore, zzzzz, snore, huh? I received radiation #10 of 13 about 2.5 hours ago. Before the session, I asked one of my radiation oncologist's nurses if I should feel any fatigue. She basically said that I would experience it, and it would likely occur sooner and have a stronger effect since I have received radiation three times before.

Once again, I was wrong, thinking that only radiation to my brain would cause fatigue. No wonder I have been more and more tired over the last week... Duh! :) Seriously, I have been fighting the tiredness until today. Trying to resist it, but then succumbing to naps. I will resist tiredness no more for the next few weeks!

In summary, my latest thought (true or not) - naps are medically necessary for me at this time! :)

04/06/10 - Radiation #6 Photos

2010-04-09T08:59:00.005-05:00

Ummm... Ask and you shall receive? (see previous post) When I went to radiation treatment #6, radiation technician (don't be offended if that is not your proper title, I'm taking an "educated guess") Andrea took some great photos. The first one below depicts my initial placement on the radiation table.

Pre-radiation positioning
The second picture depicts me in field three of three, when treatment is done. The table that I am placed on moves horizontally and vertically closer to the Radiation machine, which rotates and irradiates my spinal cord from 3 different locations called "fields." That's a short description...

Post-radiation position
I hope to post a "better" video and description of the process next week, but in the meantime you can refer back to my post on 11/18/08 for more details and a slide show of that treatment : Radiation Plan #2 Details. Press "play" button (may have to do so twice) to view.

Once again, that was from Radiation Treatment Plan #2. I'm now going through Plan #4...

04/06/10 - Radiation #6

2010-04-06T09:57:00.002-05:00

I'll have Radiation Treatment #6 of 13 later today at 4:45PM. I'm almost half-way done already... I need to take/post a picture! The treatment typically lasts less than 5 minutes, so I am in and out. So far, I don't feel any ill-effects or pain, and I don't expect that I will.

Once again, I won't find out any results until I have an MRI on May 20th, unless I happen to have some improvement in side-effects from my illness before then. My tumors have been sensitive to radiation treatments in the past, so hopefully that trend will continue...

04/01/10 - Why I Blog About My Illness

2010-04-01T09:20:00.003-05:00

Initially, I started to blog about my disease to keep concerned family members, friends, and co-workers updated about my current status instead of answering the same questions over and over via phone calls and emails. That still holds true to this day, still referring people to my blog for answers...

I guess sometime after my operation, I added another reason - to help other patients that may be in the same or a similar battle with cancer. Admittedly, there was a time after my brain surgery where I "didn't like my computer" (I really didn't) and stopped updating my blog for about 4-5 months. But I still did take pictures of what I was going through, and I hope to post them here in the future.

Back to helping other patients. In my medical posts, I try to make sure they contain accurate information. I also try not to inject my opinion, but it does come through at times, when I feel strongly about an issue. I add other non-medical posts to hopefully keep readers somewhat entertained. When I think back, I believe that I recently tried to separate medical and non-medical posts in their titles, but I dropped that. The subject material should differentiate the two... :)

I do appreciate anyone that looks at any part of my blog and your support. I especially appreciate comments, if you choose to leave them, but if you don't, that's okay, too. In the recent past I tried to answer all comments. Don't feel bad if I don't answer them in the future, as treatments, or whatever, may prevent me from answering. Rest assured that I read and appreciate every comment even if I don't respond.

Just something I wanted to mention, so people don't feel left out. :)

03/30/10 - Radiation #1 of 13 Treatments

2010-03-30T20:27:00.003-05:00

I had my first radiation treatment for my T5/6 spinal tumor this afternoon. There will be a total of 13 daily (business days only) treatments, likely ending April 15th. My radiation oncologist is not yet concerned about treating my lower (T12) tumors.

This is the fourth time I have received radiation treatments, so nothing is new to me here... I'm sure I've said this before, but you can only receive so much radiation, and each treatment increases the chance of serious injury. The reaction can vary patient by patient. Many big unknowns. So the doctor is predicting my best treatment plan. I have a lot of faith in his abilities. :)

Today's radiation treatment lasted about 5 minutes, and was painless. Hopefully, the other twelve sessions will go as well (they likely will). I don't expect any side effects, but there may be an increase in fatigue, pain, whatever. If there are are any, I expect them to be minimal.

Next step after radiation will be to see how effective it was on MRI images which were just scheduled by Moffitt to occur on May 20th. After that, I'll probably be "rewarded" with more chemotherapy, :).

UPDATE : Not important, just wanted to mention that the reference marks near my arm pits were not tattooed. The mark on my spine was. Yes, it hurt! For more information about these tattoos and reference marks, please see my recent "Radiation Simulation" post.

03/30/10 - A Most Excellent Card!

2010-03-30T11:07:00.005-05:00

A friend of mine sent me the following card (thanks again, Slug). It was totally out of the blue, which added to my enjoyment of it!

Picture from the card...
This card is about as perfect as one could get! Two of my favorite things, Yuengling beer and a Sock Monkey. Not that I drink Yuengling (due to my illness), but Yuengling beer reminds me of Penn State and good times!

I looked on the internet for more information on the photographer, Susan Black, and the publisher of the card, www.meadvilleart.com, but I was unable to find more details... Oh well, I still have the original card and a digital copy (photo) of it!

03/25/10 - Radiation Simulation

2010-03-30T08:50:00.007-05:00

Posted 03/30. I received a Radiation Simulation last Thursday, 3/25. It is basically a series of CT ("cat") Scans to align external markings on my body with my internal anatomy. It is necessary to accurately position my body for upcoming radiation treatments.

A CT scan, notice the lasers to align my body...(click for larger view)
The above is a photo of my first CT scan during this Simulation.

The same CT Scan, viewed from the other side of the scanner
I liked the different perspective that the above photo offered. From the "back" of the CT scanner, showing me in the "tube."

Preliminary reference markings on my skin
The radiologist(?) told me to grip the end of the CT scanner table to better position my body for treatments. Then, reference points were temporarily marked on my skin. One on my back and one near each lower armpit area. I'm assuming that these marks line up with the aforementioned laser beams.

A closer view of one of my side reference marks
Two reasons for calling them temporary marks. First, although it is doubtful, they may still be moved. Second these pen marks will be permanently tattooed to my body when finalized (likely today when I go to my first radiation treatment at 2:00). The tattoos are very small, only involve some ink and a small pin-prick, and end up looking like a tiny, blue mole. I already have several on my back and chest from previous treatments.

Thanks to Lynn, who did a great job of taking the photos! I hope to post later today about my first radiation treatment!

03/29/10 - Hmmm...

2010-03-29T20:00:00.007-05:00

Did you ever feel like someone is watching you?

Oh no! A five foot tall sock monkey...
Sorry to say that someone probably is!

03/24/10 - Chemo Chest Port

2010-03-28T17:19:00.010-05:00

Posted 03/29. I almost forgot about this - again (you'll figure out the "again" when you read further). When I was at Moffitt on 03/23, my chemo port was "accessed" (basically a needle was stuck in my chest to easily attach intravenous (IV) connections) for multiple tests. Again, since my MRIs showed tumor growth, Avastin wasn't administered after my appointment with my neuro-oncologist when I would normally have my port de-accessed. As a result, my port was going to be de-accessed in the neuro-oncology clinic.

When Laura and I met with my neuro-oncologist's assistant, she told us about the negative MRI results and rushed (it was near the end of the day) to contact my radiation oncologist via phone. She returned and said that he made an appointment for me the next day, and checked to see if we had any more questions (which she had gone through previously), we said,"No" and left...

After we had dinner and drove home it was near 7:30pm. I just temporarily laid-back on my bed, and my cat Karl jumped onto my chest. As I pet him, I felt strange objects on my chest and immediately realized my port was still accessed! Laura, myself, and my doctors had all forgotten about it. At least it wasn't just me!

My port, accessed. Note tape to help hold some of the attached plumbing.
From previous experience, I knew my accessed port would be fine overnight. Luckily, the next day I called my radiation oncologist and he has (at least) two nurses, Linda and Laura. Linda prepared to remove my port at my 1PM appointment (it needs to be "flushed" with Heparin before removal, so she obtained some). The Heparin prevents clotting of blood in the port.

The needle, tubing, and IV accesses that were attached to my port
After Linda de-accessed my port (see removed "plumbing" above), I asked if I could keep the removed hardware. She really didn't want me to and Laura was strongly against bringing home my "biohazardous waste." So, I just took a few pictures of it. :(

A close-up of the needle that sticks into my chest port
I had the chemo port implanted into my chest early November of 2006, a few weeks after my brain tumor surgery. Kind of funny to post about the port now, but I went through how it is accessed, and to be complete, I guess I'll add a short description of the port itself next...

Parts and placement of the port
Basically, the port is implanted in my chest, a few inches below my right collar bone (clavicle). The port has a catheter (tube) that goes into my subclavian vein, as shown in the X-Ray (not an x-ray of me). My port is just below my skin, so I can feel it (with a finger) as well as its catheter. The port itself has a round area of thick silicon (likely?) into which a needle is inserted to access it and deliver medicines, blood transfusions, or draw blood for testing. It is more convenient than accessing a vein on your arm over and over, which can also physically damage the vein and some chemo drugs also damage smaller veins.

My port, days after surgery.
TMI(Too Much Information), but hopefully it will help another patient out there...

03/24/10 - Radiation Oncology Appointment

2010-03-28T17:06:00.003-05:00

Posted on 3/28. A day after I received poor MRI results, I met with my Radiation Oncologist. I expected a Radiation Simulation, which basically determines the treatment plan, but my doctor wanted more time to review the information about the Moffitt MRIs that I presented to him. Of course, I was all for that! Further review of critical information doesn't disturb me at all... After about an hour, Laura and and I setup a preliminary Simulation appointment for the next day (last Thursday).

03/23/10 - MRIs, Dr. Check-up, Avastin 2.11

2010-03-28T15:10:00.012-05:00

Posted 3/28. This appointment including commutes and dinner out took about 12 hours last Tuesday. The MRI of my thoracic spine showed significant growth of my T5/T6 tumor (formally referred to as my T4/T5 tumor, but T5/T6 is more accurate, all names according to my doctors). The growth can obviously be seen in the image below.

T5/T6 Tumor, older MRI on the left, newest MRI on right
Note that I did have an MRI taken on 02/25, but it was virtually the same as the MRIs from 01/26, so I chose to compare the images from the 01/26 MRIs because they are easier to work with... Really, the T5/6 tumor had significant growth spurt from 02/25 to 03/23. Avastin was stopped because it was supposed to stop or limit this growth, and it failed in this case. Too bad, as it had no negative side effects on me, :(.

T12 Tumors, older MRI on the left, newest MRI on right
In the past month, the tumors located at my T12 vertebrae also grew slightly, as shown in the image above. Also, the latest written report mentioned a "lesion" at my L4 vertebrae, shown below. I'm not exactly sure what "lesion" refers to in this medical description, but it appears to be much less significant than a tumor. It may be why I have been experiencing lower back pain the past few months (L4=Lumbar4). It's either the lesion, or my paranoia... :)

L4 lesion, older MRI on the left, newest MRI on right
My doctors at Moffitt did express some urgency about the MRI results, and called my radiation oncologist who set up an appointment for the next afternoon (last Wednesday). Radiation treatment was always a back-up plan if Avastin stopped showing positive results.

The usual dinner spot when we are at Moffitt late...
After Moffitt, Laura and I ate at Jason's. I ate 7 ice cream cones. They are small, and I had bigger things to worry about than fat and calories... :)

03/09/10 - Avastin 2.10 (via cell)

2010-03-09T20:36:00.011-05:00

Attempt #1, @ ~9:45AM: Post failed!
Attempt #2, @ 8:26PM!: (same text from posting attempt #1, about 9:45AM) An experimental post from my cell phone. I'm receiving Avastin currently. I posted from my old cell in the past, but not from this phone, and I have had it for almost 1 year now! This will remain a short post until I get home and can use a larger keyboard... :)

[Edit on PC] Of course Verizon just HAD to advertise! Not like I PAY (too much) for their services! I could easily delete the following ads, but I choose not to, to show people another UNNECESSARY item that should aggravate you as it does me! I did shrink the text and change its color, to limit the ad's visibility... ;) [Edit on PC]

This message has been sent using the picture and Video service from Verizon Wireless!
To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.
Note: To play video messages sent to email, Quicktime@ 6.5 or higher is required.

02/26/10 - MRIs and Radiation Oncologist's Review

2010-03-08T22:15:00.006-05:00

Posted 3/8. Actually, I did have multiple posts on 2/26, but the MRI scans (actually taken on 2/25) are in a different format which doesn't play nice with my MRIs from Moffitt, which caused a delay. Although I can't say that it was was responsible for all 10 days of delay... :)

I picked-up the CD-ROM copy of the images on the morning of 2/26 (I ranted about this in my 2/25 post about "Inefficiency"). The CD also included a written evaluation of my scans. When I read this report it upset me. My father had driven me over to pick-up the CD, and he asked what the report said as we returned home in his truck. My response was, "It says I'm screwed..."

Not too long after he dropped me off at my house, Laura came home for lunch. I told her about MY negative interpretation of the report. She calmed me down, finished lunch and returned to work. The main reason that I was upset was because I didn't want to make her upset. I failed that one, having her calm ME!

It turns out my Radiation Oncologist had one of his nurses call me to tell me not to worry shortly after Laura returned to work. I really thought that it was Laura's doing, but it turns out that the report apparently alarmed him also, thus the call from his nurse to calm me. That was totally unexpected, but nice.

T4/5 Tumor, Moffitt MRI on the left, newest (Mease) MRI on right
My Radiation Oncologist went over to the hospital (luckily, it's only about 2 blocks from his office), and he reviewed the MRI images it alarmed him, too. When they looked at the images they compared them to MRIs I had taken on 1/26 at Moffitt (which the person that wrote the report did not have the "luxury" of doing - comparison). It turns out that when compared to my last MRI, they were basically the same.

T12 Tumor, Moffitt MRI on the left, newest (Mease) MRI on right
No change is good! Change for the better (tumors shrinking) is best! Change for the worse (tumors growing or spreading) is bad! In my case no change was good! The negative interpretation of the written report, due to the writer's lack of benefit from one of my previous MRI summaries did cause a misunderstanding for several hours, but it was no one's fault. There was a lack of information, which made the early report incomplete. 'nuff said...

I was determined to post this as my next chemo (Avastin) appointment is just 9 hours away, for which my father will pick me up in 7.5 hours, I will wake-up in 6 hours, etc.

02/26/10 - Like Father, Like Son

2010-02-26T22:35:00.007-05:00

Er... Umm... Cat.

My cat, Karl, had surgery on Monday to remove some "stones" from his bladder. He came home Tuesday and paced between his water and his litter box for a few days, but he appears to be beyond that phase now, and thankfully quickly improving!

A mad boy laying on the floor, showing his partially-shaved belly
Laura held him tonight while I took a picture of his stitches (they are blue). She definitely risked scratching and biting, because he usually doesn't like to be held, even when he is healthy.

Laura holding Karl to expose his stitches, doesn't he look happy?
He had this surgery in the past. On that occasion, he removed his own stitches after a few days, apparently having fun casually flicking them across the room with his mouth. I taught him well...

02/26/10 - MRI and Doctor's Appointment

2010-02-26T22:31:00.001-05:00

Hopefully, I will post this soon, likely in the next two days...

02/25/10 - Thoracic Spine MRI, Inefficiency

2010-02-25T13:14:00.005-05:00

No real reason to post this, because I won't get results until tomorrow morning (hopefully), and I won't see my Radiation Oncologist until 4:30pm tomorrow to discuss them...

A short tirade on the Health Care system. For example, this MRI. It was performed at a different hospital than my "normal" one, Moffitt. They have been performing more complete (4 MRIs vs. 1 this morning) MRIs every two months for about 8 mos. This morning was what I consider to be an "interim" MRI simply because it was off-schedule to check the progress of a specific tumor on my spine.

Back to the inefficiency. The hospital that performed this MRI will not have a CD-Rom of images until tomorrow morning. My radiation doctor will presumably not get a copy of this CD, unless he requests it. He may get a report faxed to him tomorrow. I will likely go to pick-up a CD tomorrow morning and come home to copy it (several copies), so that I can give one to him when I meet with him at 4:30. Oh, and because of the risk involved, I can't currently drive. So my father will likely take me, and if he wasn't down here (he's officially a snowbird), Laura likely wouldn't take me because she has to work (she's already leaving work about 2 hours early for my radiation oncologist appointment).

If the MRI were done at Moffitt, I could request a CD about 15 minutes after the scan was completed. I'd likely have the CD in my hands about 15 minutes later. My doctors at Moffitt can access it via their internal computer network. The trouble is, it typically takes an hour to get to Moffitt vs. about 15 minutes to get to the hospital this morning (it is also preferred by my radiation oncologist because his office is only about two blocks away).

On efficiency, I have a Network-Attached Storage (NAS - a hard drive) and I can presumably access any files on it securely from anywhere in the world! Microsoft's Remote desktop can be setup to access any computer (securely) over the internet. Yet I can't get a CD containing my MRI images from early this morning until tomorrow!

There has been a LOT of talk about updating the Health Care System so that all U.S. citizens are covered. That would be great! But just the inefficiencies of the current system need to be corrected! The billions saved could "pay" for better and broader coverage. Believe me, I could go on and on about the problems I've had with payments, insurance coverage, scheduling, reports, and so on... Just think, what if I couldn't communicate or even understand what was happening to me? That could have easily happened, and it still could...

I have to apologize for this rant, but it was due. I have had excellent care, but the patient has to be very attentive to everything that is happening, and/or have family or friends that can assist in that role. For now, I'll end this post abruptly, as I'm going to eat lunch, late...

02/23/10 - Avastin 2.9

2010-02-25T12:57:00.003-05:00

Posted 2/26. Another dose of Avastin, again uneventful (Good).

Me receiving Avastin 2.9
The nurse took this from a different angle, giving the picture a (slightly) new perspective! How exciting! Yes, I'm grasping for straws here (I think that's the saying), but I aim to keep readers interested! There isn't a lot of variance when I receive Avastin every two weeks...

02/09/10 - Avastin 2.8

2010-02-10T20:49:00.005-05:00

Posted 2/10. Well, this dose of Avastin was uneventful, again. That's good! I did experience several new items (non-medical!) both good and not so good...

The end of my Avastin treatment
I wanted to send the above picture via facebook, Email, and/or blog post - while I was still receiving the Avastin. Of course, that didn't happen because of the following "complications."

1. Moffitt's free wi-fi was not working properly, so I didn't have internet access.
2. It was difficult to take the picture, load it on the laptop, edit it (resize), upload it to a site, and add text in a time-constrained period (Avastin delivery takes about 1/2 hour). End result, I was able to just take a picture!
3. I am sure I lost focus...
4. When I first started my blog (September 2006), I could EASILY post pictures and text to my blog, via my cell phone. I have to admit that cellular technology makes it MUCH easier to accomplish this task - what was I thinking? (I was thinking that the laptop had much more horsepower than a cell phone, and it should be easy...)

Another bad thing, we were at Moffitt about 4 1/2 hours for procedures that took less than 45 minutes to complete. Of course, waiting is nothing new, patients and/or their families are just forced to put up with it...

01/30/10 - Jason's Ice Cream Cones

2010-01-30T18:02:00.005-05:00

So many people commented on my "01/26/10 - Dinner" post (not really), that I had to follow-up. First, the nutrition information - about 5g of fat and 200 calories per ice cream cone. Not so bad that I will stop eating them. For some reason, I just can't resist. I may need an intervention...

Nutrition Info, Click image to enlarge
Big Monkey commented about the "ice cream" police trying to catch me, but the reward wasn't high enough for him. Well, I just happened to take a picture of that "poster."

My "wanted" poster at Jason's
Since Big Monkey is not going to pursue turning me in, I'll just keep at it. I'm not worried about the ice cream police, even though some Jason's employees seemed to be watching me closely when we were there the other day...

01/28/10 - Radiation Oncologist Visit

2010-01-29T07:00:00.002-05:00

As the title says, I visited my radiation oncologist yesterday. He's a very,very smart man (not that my other doctors aren't), and he always seems to calm me down and give me more hope. Note that I said "more" hope, as I'm still hoping to defeat this terrible disease!

His plan is to check my tumor via MRI in a month to see what it does - shrink, grow, whatever. In the meantime, I will contact him immediately if I experience ANY physical changes (I think most likely with my walking, which is already not "normal". If I do have any changes, I assume that he would radiate my spine as soon as he could.

Why not radiate my spine now? He doesn't want to do it unless it's absolutely necessary for fear of injuring it. There's only so much radiation parts of someone's body can tolerate, and it's basically unknown (e.g. some people can take a lot, whereas some people get injured on a relatively small dose of radiation). At least, that is my understanding of it...

In the meantime, I will continue receiving Avastin every two weeks.

01/26/10 - Dinner

2010-01-27T22:02:00.010-05:00

Posted 1/27. Laura and I ate dinner (~7:15PM start) at Jason's Deli again after leaving Moffitt. It has been a while since we ate there, although we still really like it for their healthier choices, and free stuff. For instance, I really like their free cornmeal mini-muffins and free ice cream. They may have healthy choices on the menu, but I guess I destroy that by eating too many free ice cream cones. They are small, though.

I'm salivating like Pavlov's dog...
A tragedy occurred when I dropped half of my second 'cone on the floor! It landed ice cream-down, but I wouldn't have eaten it no matter how it ended-up on the floor (maybe).

The poor cone that I dropped on the floor
All I had eaten since breakfast was half of a sandwich that Laura had brought from home. Apparently, eating my usual wrap at Jason's brought out my hunger, which I took out on the defenseless ice cream cones. I ate 5 1/2 before Laura stopped me. Yep, she always jokes about the Ice Cream Police watching me when we go there...

Me eating yet another ice cream cone

01/26/10 - MRIs, Dr. Check-Up, Avastin 2.7

2010-01-27T09:46:00.008-05:00

Posted 1/27. Laura and I spent most of the day a Moffitt yesterday, left the house at 9:45AM and got home around 9:15PM. Of course, that includes about 2 hours of commute time and a "lite" dinner that was around 45 minutes long. 11 1/2 - 2 - 3/4 = 8 3/4. Just 8 hours and 45 minutes at Moffitt... Not bad, considering the appointments I had.

The MRI below shows that my spinal tumor has grown since the last MRI (12/03/09). It had been slowly shrinking due to Avastin, but it appears Avastin may have "worn out its welcome." Seriously, it is likely (according to my doctors) that Avastin is less effective now because my tumor may have changed its biology (structure). Half-jokingly, the tumor must have a "brain" with enough intelligence to defeat Avastin.

MRI from 12/3/09 compared to MRI from 1/26/10, showing tumor growth
I also likely have a new tumor on my spine, as shown below. It is lower than my current one, which is also shown again for reference. Note, these are two MRI images, as one image does not capture both... Apparently, the new one "is just around the corner" from my existing one.

Existing tumor on left, potential new tumor on right
How to proceed. My doctors at Moffitt suggested radiation could be an option to destroy both tumors, but I will still need to take Avastin every two weeks. This morning, Laura made an appointment to see my Radiation Oncologist tomorrow at 3:30. We'll see what he suggests...

I received another dose of Avastin after my doctors went over my MRIs. It was again uneventful, and done so fast (I fell asleep) that we forgot to take a picture. So, we took one on the way out of the Infusion Center (that's the department that administers most of my chemo).

Me at Infusion Center waiting room, after receiving Avastin
A couple of things. First, apparently once somebody is "on" Avastin, they cannot stop taking it, for fear of a major outbreak (tumors everywhere). I did not know that prior to yesterday, and I don't like it! Second, although I did enjoy the time from October through now (almost 4 months), if I could go back, I would try to do more (not that I didn't do anything)... This comment is not meant to be interpreted negatively, but you never know what will happen next, and that applies to everyone... You should enjoy every day to its fullest!

01/21/10 - Cold Weather Effects

2010-01-24T16:32:00.011-05:00

Posted 1/24. It is finally warming up now, but the approximate 3 weeks of abnormally cold temperatures we had wreaked havoc on our environment across Florida. I guess one reason I wanted to publish this post was to show that I wasn't the only one that was cold...

Thousands of fish died because they couldn't handle the low water temps, which dipped into the low 50s and high 40s. I just went out on the 21st to take some pictures, but a lot of the dead fish had either been eaten by other animals, decomposed, washed out into deeper waters, or were cleaned-up by people.

A Lady Fish (similar to a small Tarpon) on Crystal Beach
Since I was late (due to my own hibernation), there weren't many to be found. I looked at Crystal Beach, at a canal near my father's mobile home (a lot of canals and inlets dead-end around here, so many dead fish washed into these areas), and at a waterfront restaurant that Laura and I went to last night (1/23).

A Snook on CB
As much as I wanted to stick to my own photos, I looked at a local newspaper's web site, and downloaded a few. They have the advantage of starting earlier and covering more ground than me... :-) So, the following photo is from their site, it shows MANY fish floating on the water, and is meant to shock readers!

A lot of dead fish at Treasure Island (less than 45 min south of us)
A lot of local plants suffered, as my photo below demonstrates.

A Hibiscus tree at the bottom of my stairs
It also affected a lot of crops, as shown in the St. Pete Times photos below. Local farmers spray some of their crops with water, and the ice that forms protects them from cold temps (likely any temps lower than 32 degrees F).

Oranges and Strawberries with a protective coat of frozen water
Apparently, the state of Florida can't handle extended periods of cold temperatures well, as I could cite many more bad effects. Really, I just need to get this post published, so I will end it here... :-)

01/14/10 - Avastin 2.6

2010-01-15T06:06:00.004-05:00

Posted 1/15. My 6th dose of Avastin, again uneventful. This part of the post has become like a broken record (which is good - uneventful), but I'd like to post about each Avastin delivery, which will occur every 2 weeks while I'm on it.

Me immediately after Avastin 2.6 was delivered
In two weeks (1/26), I will receive another dose of Avastin, as I mentioned, but I will also have MRIs and meet with my doctors to see how my tumor has been reacting to Avastin, and if there is any spread of the disease (i.e. new tumors). Oh, my 7th dose of Avastin will depend on my doctor's update from the previous MRIs and a blood test given that morning.

My next visit will be a big one, seeing results of my on-going treatments. Hopefully, they will be good! I will likely be at Moffitt all day, but I am used to that by now, and it is not really a factor...

01/08/10 - Update

2010-01-08T13:29:00.003-05:00

My doctors at Moffitt got back to me, they don't attribute my runny nose to my disease or treatment. I happened to speak to my brother before lunch, and he mentioned that he just got over a mild cold. The symptoms? Runny nose! He's the culprit...

01/08/10 - What I did by 8AM today...

2010-01-08T08:27:00.007-05:00

I usually wake up before 8:00AM, but this morning, I woke up at 4:30AM. I stayed in bed until nearly 5:00AM, hoping that I would fall back asleep. At 5AM, it was fairly obvious to me that sleep was not in my immediate future, and 5:00 is a fairly reasonable time to get up.

At 4:30AM, I woke up with some irritation. My sinuses were clogged, and my nose was running, so I got out of bed to blow my nose. It has been running on and off since the weekend (how nice it must be for you to read about my runny nose :). At first, I suspected maybe a weak cold or the cold temperatures, but now that it has been nearly a week, I will contact my doctors.

Back to what I did before 8AM. I'm not trying to proclaim anything special here, it's just that in the past, many people have asked me what I do all day (short answer - I try to stay busy). Hence this post.

Emailed my oncology doctors at Moffitt about my runny nose. It may seem like a trivial issue, but it could be a serious side effect or condition...
Emailed the officers and board of the local PSU Alumni club, which Laura and I stay as active as we can in. I have been maintaining their website for several years, and I may hand it off. "Officers and board" was to make it sound more important than it was, :), it is true, though.
Updated the PSU Alumni website (took about an hour).
Finally, made breakfast - oatmeal because I apparently have genetically high cholesterol even though I eat very healthy and stay as active as I can. In my book, almost as bad as being diagnosed with cancer, due to my healthy lifestyle.

What else will I do today? I have some things planned, and a very long list...

01/05/10 - Facebook Account

2010-01-05T11:03:00.002-05:00

Hmmm... Not so sure about this Facebook thing. I've had many friends urge me to try it, but I'm afraid of spending too much time on it. I've already slacked on this blog in the past, I don't want something else to pull me away...

Well, I created the account yesterday and I already communicated with high school and college classmates and other friends I have. So, it hasn't been so bad yet. I'll just have to track how much time I spend on it!

By the way, if you want to "friend" me, I'm on Facebook as "Mark Suter," I don't know if I can supply a direct link to my "wall" yet or not... Hate to say it, but I'm a newbie to Facebook!

01/02/2010 - Avastin 2.5

2010-01-02T14:14:00.007-05:00

At 8:30 this morning, I received my 5th dose of Avastin in what I consider to be the 2nd series (hence 2.5). Again, it was uneventful (good), as it was delivered intravenously over about 45 minutes.

Avastin 2.5 being delivered
I don't know if it was related or not, but I slept for a couple of hours when Laura and I got home.

Oh yeah, a very small happening, but the first time I've posted the same day as the event occurred in a long time...

12/31/09 - Happy New Year!

2009-12-31T09:15:00.002-05:00

Hoping you all have a happy and healthy 2010!

12/31/09 - On Coldness...

2009-12-31T07:43:00.006-05:00

I've said it before, I'm sensitive to cold, especially after my cancer treatments. So, this post is basically poking fun at myself.

I grew up outside of Pittsburgh, PA, and I stayed there until I was 24. So, I encountered some pretty cold times in the past. Just that upbringing should bring me embarrassment now. I remember one time when my brother and I broke through a portion of a frozen creek (only about 2.5' deep, but we were probably 4.5' tall at the time), we played in the creek's ice water for what seemed like hours... There are MANY other instances of being out in the very cold weather that I can cite.

Fast-forward 30 Years. When I rode my "hog" up to Walmart, the temperature was in the mid-50s. I dressed as if it was 20 degrees colder. On top, a regular T-shirt, a heavy long-sleeved one, and a heavy fleece. On the bottom, long underwear and jeans, and normal tennis shoes. I also wore gloves, as I thought the windchill created by riding my bike might be hard to endure (ok, just cold).

My cycling outfit from 12/23
I have many friends spread throughout the country that should laugh at this. Colorado, Utah, Pennsylvania(of course), Connecticut and more. About 10 days ago, I was talking to a friend in Hartford, CT, and I mentioned it was 67 degrees in my living room, he laughed and said his thermostat was SET at 67. Laura recently talked to one of her aunts in Delaware, and she said that she set her thermostat to 63 degrees. Wow, I guess I need to tolerate more cold...

Right now, it is 60. Tonight, for New Year's Eve, they are forecasting 63 degrees with a 30% chance of rain. (That's cold)

12/23/09 - Bike Ride

2009-12-31T05:53:00.011-05:00

Posted 12/31 - still December! Still 2009! Along came Wednesday, 12/23, no one was available to take me to the store. So, I decided to ride my "hog" (recumbent trike). It was fairly cold for here, likely the mid 50s, and I put on layers of clothes to combat it.

Me on the "hog," dressed warmly. Why are there tropical plants in the background?
I first rode up to Walmart, to get a present for Laura (hoping they still had one in stock). I had seen it just the day before, but I was with Laura, and I didn't want her to see it... I bought it and left. By the time I was leaving Walmart (only about 5 minutes) I was hot, so I shed my outer heavy fleece layer.

My GPS route
Next, I rode down to Starbucks to get another item for my father's girl friend, Karen. I purchased the item I had in mind. Walmart and Starbucks are visible as the two rightmost points on my "journey" as captured by my GPS. The entire track was about 8.25 miles.

In the picture of my hog far above, you can see the relatively small basket behind the seat. I managed to cram Laura's gift in there with my heavy fleece, and Karen's gift - magical! Luckily, Laura's gift was a highly compactable sock monkey, although he was about four foot tall! For anyone that doesn't know, she collects sock monkeys...

Oh, I almost forgot. The very next day, Laura came home from work all excited because a coworker had bought her a giant sock monkey - from Walmart, of course! I wasn't wasn't quick enough to put a good face on. Anyhow, she opened my gift on Christmas day, and now we have "twins." She won't give up either one...

Sock Monkey triplets
The day after Christmas, we got a third matching monkey that Laura had bought for a coworker on Ebay... He had a place to go, or we would have "triplets," as shown above.

12/24/09 - Merry Christmas 2009!

2009-12-24T20:00:00.006-05:00

Christmas is tomorrow. I spent a lot of my time preparing for it... Preparing cards, shopping (online) for gifts, making some gifts, decorating... Now, I'm done (and worn-out).

Our fireplace, decorating caught the monkey flu...
Anyhow, Merry Christmas and Happy Holidays to everyone! Above is a view of our fireplace, and below is our (fake) 4 foot Christmas tree.

Our tree. Monkey flu has become an epidemic!
It's a little late, but just thought I'd squeeze-in this post before I relax and enjoy things for a few days, I hope my readers can do the same!

12/18/09 - Avastin 2.4

2009-12-24T06:41:00.007-05:00

Posted 12/24. On Friday, 12/18, I received another dose of chemo(avastin.) As it was my only appointment for the day, so I wasn't at the hospital very long, about 2 hours. I took off my mask for the following picture.

Avastin being delivered
With the aapointment being over, we just drove home, getting there around noon, ahhh - a short day at Moffitt Cancer Center.

12/04/09 - Avastin 2.3

2009-12-13T17:42:00.005-05:00

Posted 12/13. On Friday, 12/04, I first saw my doctor. He explained the results of my MRIs and blood tests from the day before and answered some questions. Since everything was decent, he approved my chemo (Avastin.)

Avastin being delivered
Since my chest port was already accessed, delivery of the drug took just over a half an hour. Of course, we had previously waited about two hours to get admitted... There were no problems with any of the appointments, so we left the hospital when the Avastin delivery was finished.

12/03/09 - MRI's, Etc

2009-12-13T16:55:00.004-05:00

Posted 12/13. So much for the Etc (see post title). I had appointments set up for a very full day that Thursday, 12/03. Unfortunately, the MRI's ran long and I had a Doctor's appointment and chemo appointment postponed. Fortunately, I was able to make it back the very next day, and Moffitt was able to squeeze in the re-scheduled appointments. If you added-up the drive and wait times of that Thursday and Friday, the daylight hours were pretty much spent.

I'm going to separate the posts from the two days, just to have a "break" in all of the "action." The MRI's showed my spinal tumor was a little bit smaller and it hadn't spread to elsewhere in my spine and my brain. (I didn't actually find these results out until around 11:30am the next day, since that is when the doctor reviewed them with me, but I'll put them with this post.) Anyhow, the overall MRI results were good!

MRI Image showing smaller tumor on right (note image dates)
Thursday night (the first night), I had to go home with my "chest port accessed." This means that there was a needle in my chest port with some tubing hanging off of it. Under my skin, the port has a tube that goes into my subclavicle vein on my right side. It makes it easier to administer various intravenous tests or drugs. The fact that it was accessed overnight was not a big deal, I just had to make sure nothing inadvertently got caught-up and tugged on it... I meant to take a close-up picture of it, but I forgot.

12/07/09 - Spam Update

2009-12-07T09:02:00.003-05:00

Another blogger (thanks Christine) commented that I can eliminate most spam by requiring people who comment to match a word that is displayed by typing it in. I'm aware that a lot of people are annoyed by this process, and I apologize, but hopefully it will prevent spam from overtaking the comments.

12/06/09 - Spam?

2009-12-06T14:57:00.002-05:00

There have been some strange comments on my blog postings recently. They're basically advertisements for commercial items. I didn't expect these on my blog, and do not like them. I consider them to be "spam" and will permanently delete them as soon as I find them. Not a big deal, but annoying...

In other news, I just had several time-consuming medical appointments, with good (status quo) results. I hope to post here about them in the next few days...

11/19/09 - Avastin 2.2

2009-11-20T21:33:00.005-05:00

So far, my blood counts have been decent, but I've only received 1 dose so far, this post is about my second post, but I won't find out about any negative effects until the future. (I did receive two treatments of Avastin back in October, but we'll consider this "series 2.")

Receiving the second dose went well, I fell asleep. The whole treatment took around an hour, I really didn't pay attention. I had told Laura I wanted to take a picture, but it was done before we knew it... The nurse had disconnected my chest port and we were ready to go. So, Laura took a picture, then we left.

The end of the treatment
Yes, I'm wearing jeans and a medium-weight coat. The white material near my left hand is a blanket. I get cold. For one thing, it is always cold in the hospital, but chemo and/or radiation treatments have left me feel cold pretty much all of the time. It was probably in the about 83 outside when the picture was taken. One great thing about feeling cold - at least it makes the low 90s more tolerable down here in Florida... :-)

Oops! Forgot the mask at first. Part of my swine flu defense as well as quarantining myself. I would get vaccinated, but with the shortages, it seems like young kids and students have been getting it first...

11/13/09 - Bike Ride

2009-11-15T12:55:00.004-05:00

Yeah, I wanted to post that I rode my recumbent trike on Friday because it has been a while... When I went to first ride it, the chain popped-off for the first time. Probably the 11/13 date... Anyhow, just a slight annoyance as it was easy to put on, once I saw how the manufacturer routed it (it is different than a regular bicycle since it is a recumbent).

On Saturday, Laura ran a 5k race (3.1 miles) that likely inspired me as it benefited The Suncoast Primate Sanctuary (The Chimp Farm) nearby us. She came in 4th. Unfortunately, there were only about 20 competitors. I rode my trike to the street just north of The Chimp Farm. Yes, I had my GPS track it.

The GPS Track
On the southern end, I rode past the Crystal Beach waterfront. In the middle, I rode around the perimeter of Wall Springs Park, a county park which is very close to us. The GPS said I rode about 7 miles. It has been a while since I rode my bike, so my legs and back are letting me know about it.

11/05/09 - Avastin 2.1

2009-11-06T14:51:00.002-05:00

Posted 11/06/09. The Avastin treatment went well. The whole thing takes about an hour, not including the wait. I will find out what it does to my blood counts in future tests...

11/04/09 - Treatments...

2009-11-04T16:11:00.002-05:00

I've been having my blood counts tested twice a week for the past three weeks. They have risen enough to try Avastin again. Avastin is the drug that prevents blood vessel growth. It had been working on my spinal tumor for the last MRI. Its given every two weeks, so this will probably be like almost starting again.

I go for my first treatment tomorrow, 11/5. We'll see how they turn out...

10/22/09 - Wedding

2009-10-27T09:59:00.012-05:00

Posted 10/27. On Monday, 10/19, we were out so I could get a blood test, and it just so happened that the county office that distributes marriage licenses was nearby. So, we stopped there and they did everything but the final notary. I think I was duped...

Laura works at a bank, and I think that everyone is a notary there. She only worked until around 3:00PM on Thursday, 10/22. We planned on having the license notarized after that...

I mistakenly thought it would be a straight-forward process... Big Monkey was the master of ceremonies because he thinks he is the King of Crystal Beach. (more at Big Monkey's House Wedding Part 1,2,3)

King Big Monkey
Cynthia decorated and also presided over the ceremony, Amy decorated and took some photos, and Deb was the official witness. Below, Laura is cutting the cake, and you can see some of the nice decorations that were there.

Laura cutting the cake
Finally, a picture of the two of us. It's not much, but it's what that we can muster right now.

Laura and Mark
Thanks again to everyone at the bank for adding some excitement and cheer to our day!

10/13/09 - Platelet Transfusion

2009-10-25T11:08:00.002-05:00

Posted 10/25. Well, I was supposed to receive intrathecal chemo 2.8 and avastin 3.0. Moffitt tests my blood counts before doing anything, and it turns out my platelets were at 10,000. Normal low 140,000. So, they were pretty low!

Instead of getting other treatments, I got a platelet transfusion. Unfortunately, we didn't take any pictures. So, an old one will have to suffice...

6 units of platelets
My PA also prescribed a mouthwash with some lidocaine in it. Lidocaine helps minimize the pain of the ulcers when I brush my teeth.

My bloody noses and ulcers were side effects of the chemo and the avastin. For the time period, I'm not receiving any treatments to see how my blood counts react. Another side effect I forgot to mention was fatigue. I was not able to update my blog, answer my email, or so on...

10/08/09 - 10/12/09 - Nose Bleeds

2009-10-25T10:39:00.004-05:00

Posted 10/25. My nose bleeds proceeded to get worse. It came to be if I blew it at all it would bleed without wanting to stop. I had to apply pressure to my nostril to get it to slow down.

Nighttime was the worst. I drooled and there were some stains on my sheets. During the day, I tried to keep my head back and my breathing constant so my nose wouldn't bleed.

My gums were also ulcerated. The inside of my upper and lower lips were all swelled-up as the nose bleeds went on. As the nose bleeds got worse, so did the ulcers.

10/07/09 - Chemo 2.7, MRI

2009-10-24T10:20:00.004-05:00

Posted 10/25. On Wednesday, 10/07, I had MRIs of my brain and spine. It showed that the avastin (the drug meant to decrease my blood vessel growth) did cause my spinal tumor to decrease in size.

MRI of smaller tumor
My doctor also gave me my intrathecal chemotherapy. The chemo delivery went well, but I told my doctor I was having nose bleeds...

10/05/09 - Chemo 2.6

2009-10-24T10:07:00.002-05:00

Posted 10/24. On Monday, 10/5, I received my 2.6th dose of methotrexate intrathecal chemotherapy. There was not a problem with it.

10/01/05 - Chemo 2.5

2009-10-24T09:58:00.003-05:00

Posted 10/24. On Thursday,10/01/09 I receive intrathecal dose 2.5. The drug delivery went fine.

09/29/09, Chemo 2.4, Drug

2009-10-24T09:43:00.002-05:00

Posted 10/24. Tuesday, 9/29/09, I received my chemo dose #2.4, and my drug dose #2 to prevent blood vessel growth. There was no problem with either.

09/21/09 - Fever, Flu?

2009-10-23T14:47:00.003-05:00

Posted 10/23. On 9/21, I was running a temperature. Laura took me to a clinic, and their test indicated that it was not the flu. The next day, my PCP gave me a prescription to an antibiotic. The antibiotic was a 5 day supply. That 5 day supply somehow made my temperature come down to normal. I don't why because I was taking antibiotics, not antivirals.

Anyhow, by the time my normal inthrathecal chemo and drug administration the following week, on 9/29, I was deemed ready to receive it.

09/18/09 - Engagement Ring

2009-10-22T10:59:00.012-05:00

Posted 10/22/09. Laura and I have been dating an embarassingly long time, which I'm sure I prolonged. I'm sure she wanted to make our relationship official a long time ago. Our first date was 05/11/96. Wow! Yeah, being the photo person, I do have a photo of it.

Our first date
So, I have no car and I do not to go to any stores to avoid exposing myself to swine flu, of which I'm a member of the "do not expose yourself group." So, I set out to make a ring. There's an abandoned house down the street from myself where I "borrowed" some pieces of bamboo.

Local bamboo patch
Next I sawed it and sanded it until it was the size of her finger. I did a little experimenting, and it worked pretty well. Too bad I don't have the where with all to finish my shed/workshop "man cave", I might be able to go into production...

Preparation of the ring
Oh, I almost forgot the crystal. It was one of Big Monkey's earrings. (We replaced them after I gave her the ring.) It worked very well!

The bamboo ring
We went down to the Crystal Beach pier, and she accepted the ring. It was a total surprise, accept I had asked for her parents' permission.

Oh yes, a few days later, Laura went to the store and used a bit of plastic to purchase a proper ring...

The REAL ring

10/22/09 - Broken Record

2009-10-22T10:30:00.000-05:00

I haven't posted for a while because I got sick and my treatments have been making me very drowsy and caused me to easily bleed. Most of this is taken care of, but a new treatment plan has to be put in place. We'll have to see what comes up...

09/17/09 - Intrathecal 2.3

2009-10-18T17:19:00.005-05:00

Short post. Uneventful methotrexate intrathecal chemotherapy. Went well...

09/15/09 - Intrathecal 2.2

2009-09-16T09:09:00.002-05:00

Last night, I had intrathecal chemotherapy 2.2 delivered at Moffitt. It went well and there were no issues. No pictures, as they would be redundant, and we didn't take any... I'll receive another dose tomorrow. Once again, my calendar to the right tends to list my medical appointments. It is usually the most accurate source of information, because it is easy to update. :)

09/10/09 - Intrathecal 2.1, Drug 1

2009-09-16T07:49:00.010-05:00

Posted 9/16/09. Last Thursday, I received my first dose of a new (to me) intrathecal chemotherapy drug, and a drug to prevent blood vessel growth, hopefully choking-off nutrients and oxygen to my spinal tumor.

Methotrexate looks like Mountain Dew
The new intrathecal chemotherapy drug is methotrexate. As I mentioned in my "Irony" post, it needs to be given twice per week because its effectiveness doesn't last long. It looks like Mountain Dew... Maybe that's why I don't sleep well... No, actually I have been sleeping well since I have been off steroids.

Receiving Intrathecal Chemotherapy
Methotrexate is administered relatively fast, in about 5 minutes. On the contrary, the drug that prevents blood vessel growth can take several hours. Last Thursday, the initial dose took about an hour and a half to receive intravenously. Luckily, it only needs to be delivered every two weeks.

Receiving Avastin
Yes, the intrathecal chemo is delivered via a port in my head, and the anti-blood vessel drug is delivered via port in my chest. To administer it, a pump controls the rate at which I receive it. Big Monkey inspected the pump before had to make sure it was working properly, shown below.

Big Monkey inspecting the pump
Any drug that takes a long time to administer tends to be delivered at Moffitt's Infusion Center. Like the rest of Moffitt, it is very nice. You can read, watch TV, sleep, or just sit there during the drug delivery. For example, we were there late last Thursday, and watched some of the NFL Kickoff show from Pittsburgh (my home town). Of course, nurses execute and monitor drug delivery. It has been a comfortable experience for me when I have been there.

09/08/09 - Irony - Continued

2009-09-16T07:30:00.002-05:00

Posted 9/16/08. Apparently, I misunderstood what my P.A. said on 9/8/09. She just clarified the facts yesterday. I had thought that a "precursor" to cancerous tumors had spread to my lower spine. I was wrong, which in this case is a good thing because the truth is a better diagnosis for me. I still have a tumor in my upper (thoracic) spinal cord, but things could be worse...

09/08/09 - Irony

2009-09-13T16:45:00.009-05:00

Posted 9/14/09. So, I had the last month-and-a-half (before 9/8) off from treatment. Probably the best I have felt in three years (since initial diagnosis). But my outward appearance could fool you...

Internally, I am not doing so well. An MRI on August 4th found another tumor on my spine, and my doctors decided to give me some time off from treatment. Well, an MRI on September 8th, found that the tumor did grow as expected, and the disease (cancer) has spread into my lumbar (lower) spine.

The most recent MRI has the tumor indicated by red arrows
I was given four different treatment choices. I chose to receive a different intrathecal chemotherapy drug (methotrexate), and a drug that is supposed to inhibit blood vessel growth that may cut off nutrients and oxygen from the tumors.

Methotrexate is administered twice per week as its effectiveness doesn't last long. The drug that prevents blood vessel growth is administered once every two weeks, and can take several hours to deliver.

At first, this post contained more information about disease spread, but I want to confirm more facts before I post them.

09/02/09 - Deafness?

2009-09-03T09:50:00.004-05:00

This may seem very strange, it was to me, but now I'm completely deaf in my left ear and it's very likely that it will never regain any hearing capability. It happened very suddenly (overnight), and I'm sure that I'll miss it more and more as time goes on.

Radiation #3 initially impaired my hearing probably 10-20%, that was obvious because Laura kept having to repeat things that she said. My hearing was slightly impaired for over a month, then it got worse rather quickly, then I woke up deaf in my left ear.

I initially thought it was a physical blockage, such as a wax build-up, so I tried for a few days to clean out my ear. I also sent an email to my Neuro-oncologist's Physician's Assistant. Her response was pretty urgent. She thought the deafness could be due to spread of my disease. She suggested we speak to my Radiation Oncologist and see an Ear, Nose and Throat (ENT) specialist (doctor).

We called my Radiation Oncologist yesterday morning. He also suspected the radiation treatment #3 could have caused some systems to over-produce wax. His office was able to set me up with an appointment with an ENT yesterday afternoon.

So, I went to see the ENT yesterday. He ran multiple tests. There was no physical blockage (that would have been the best option). From his experience, he said that the radiation treatment to my type of brain tumor was the likely cause (the second-best cause). He also said that if it is the cause, it is VERY unlikely to recover, and nothing will help, even hearing aids. One good thing, he said if radiation is the cause, he's only see it effect one ear...

Well, I'm scheduled to get MRIs done next Tuesday. I should find out then whether the deafness is due to radiation treatment (yeah!) or the spread of my disease (boo!).

Approximate graph of my left ear hearing
The above graph (click to enlarge) is only approximate and is meant to show how sudden the deafness in my left ear happened. The ENT tested the hearing in my right ear and found it was normal, with some high-pitch impairment.

08/04/09 - MRIs - Out with the Old, In with the New

2009-09-02T11:41:00.013-05:00

Posted 9/2/09. I'm so on the ball (posting MRIs one month after they were taken). My last few posts had no pictures, so I wanted to get some up...

MRIs of my eradicated brain tumor
Above are MRIs of my brain tumor discovered in June. It is circled in green (two different views, click to enlarge) because it was "destroyed" by radiation #3. If it were still "alive" it would show up white due to the contrast (an injected chemical) highlighting active blood flow.

MRIs of my spinal cord tumors
Above are MRIs with (left) and without (right) contrast. The tumor circled in green was eliminated by radiation #3. The tumor circled in red was discovered on August 4th on the MRIs shown. Note that it appears as a white circle in the left image due to the addition of contrast.

So there is presently a new spinal cord tumor. Radiation decays over time, so my doctors decided to both create more time between radiation treatments and give myself and my body a break from treatment - so I've had the last month "off".

Next week (9/8/09), they are going to image the tumor via MRI again to see how it has progressed. I would assume I will receive more radiation after that, and probably more chemotherapy after the radiation. Although I'm likely wrong...

08/27/09 - Gibberish, Potential Medical Causes

2009-08-27T15:30:00.003-05:00

Shortly after I put the initial Gibberish post on my blog, I also Emailed what happened to my Physician's Assistant. She is always very knowledgeable and provides an answer. She suggested that I may have experienced a seizure or a TIA. So much for being a trivial event...

From what I have read and what she has told me today, a seizure could coincide with a state of consciousness and its lasting effects (the post-ictal phase) could be when I was unable to talk right.

A TIA (Transient Ischemic Attack) is often a precursor to a stroke. Like a mini-stroke. My receiving radiation to my brain (twice) may have increased this risk.

Neither of those options are especially good, which leads me wonder what's next?

Oh yeah, if I experience similar symptoms again, I should go to the nearest Emergency Room...

08/26/09 - Gibberish

2009-08-26T16:03:00.004-05:00

Yesterday evening it seem like I had an episode. Around 5:00PM, I couldn't convey anything long and meaningful during regular speech. I had this happen in the past before two of my hospital visits. Last night was somewhat different because I was able to correctly say a few single-word phrases and act fairly "normal." For example, when I tried to say,"That toy is not for the cat." I would say something like,"do pon red duj gaz." After about 1/2 hour of this, I was able to take about a 15 minute nap and my speaking returned to normal. Strange!

I don't know why this happened. It is very frustrating to know what you want to say, and not be able to say it. It reminds me of being back in inpatient rehab. I didn't have a problem speaking, but my 85+ roommate did. He had a stroke and was trying to recover from it. He was upset when the right words didn't come out. Our mind can do some amazing and detrimental things.

08/26/09 - Quick Update - the past month...

2009-08-26T09:54:00.002-05:00

The last month (or so) was full of a lot of surprises for me. Radiation #3 ended on 7/14. I went to Moffitt on 8/4 to get some tests done. Via MRI's, they discovered that the two tumors that were targeted by radiation #3 were destroyed. Unfortunately, the MRI did lead them to find a new tumor on my spine. On Thursday, 8/6, I saw my radiation oncologist and he discussed the new tumor with doctors at Moffitt.

There game plane - since the tumor is small and I just got done with a radiation treatment, they gave me time "off" and are going to image the new tumor the first week of September. My estimate is I will likely get more radiation followed by more chemotherapy...

Having a month of, I decided to go to Pittsburgh. I bought the plane ticket on 8/9 for travel 8/13 - 8/20 (I was amazed it was still affordable - short notice 'n all). Thanks to all the people I saw, those that drove me around, or gave me a place to stay. I have been recovering on past visits, but it was worse on this one (mainly more sleepiness).

I got home late last Thursday evening from the Pittsburgh trip. The following day my former employer had a "Family Day." Long story short, I went. I'm glad I did as it was nice to see former coworkers and see what they were working on.

Hopefully I will elaborate on these subject in the near future,

08/26/09 - Blog Jumbalaya

2009-08-26T09:44:00.004-05:00

I like to my keep posts in chronological order, but in doing so, I might delay or completely eliminate an easier post. Well, I have to stop doing that. So my blog will be "jumbled," but it should have more posts... If posts are out of order, they will be dated.

08/01/09 - "Milestone" Birthday

2009-08-01T21:52:00.008-05:00

8/1/09. I turned 40 today. I'm not trying to solicit any gifts, cards, emails, or so on - just a reflection of my age so people are aware.

I was first diagnosed with a brain tumor on 8/23/2006. 22 days after my 37th birthday. After surgery, a biopsy determined the tumor to be Medulloblastoma. A type of brain cancer mostly found in children. Less than 2% of adults diagnosed with brain or spinal cancer have Medulloblastoma, while (unfortunately), it is more common in children, with nearly 75% of Medulloblastoma diagnoses occurring in children age ten or less.

Prior to my diagnosis, I ate healthy most of the time(98%?), and exercised on a regular basis. I was pretty healthy... Just goes to show you that cancer can attack anyone. Now, I still eat well and exercise when I'm up for it. Although I haven't been up for it much in the last few months due to side effects of treatment...

My 40th Birthday cake
Well, I didn't plan on it, but now I'm compelled to list a brief history of my disease related to my age. Once again, it first was diagnosed 8/23/06 soon after I turned 37.

It first spread when had been 39 for just over a month, diagnosed with a spinal cord tumor on 9/9/08...

Now, just before my 40th birthday, on 6/2/09, I was diagnosed with a new brain and a new spinal cord tumor - again, a spread of the initial disease.

UPDATE! These were my "newest" tumors, the ones I that mention when I speak of Radiation #3 which has been over for almost three weeks now. I'm currently in "limbo," waiting to see how effective Radiation #3 was, and how to proceed. I'm due to find out on 8/6...

Moral of this post - normally people dread birthdays as they get older, it's the two months before and after them that I can do without. More seriously, cancer can strike you at any time, any place (organ) no matter what your age or health...

By the way, I am still working on a detailed radiation post.

07/14/09 - Radiation Series #3 Over

2009-07-21T08:09:00.006-05:00

Posted 07/21/09. As I mentioned in the title, Radiation Series #3 ended about a week ago. In this context, I intend for "Radiation Series #3" to include the immediate 20 previous treatments given to me nearly every day in the past month. Series #3" to hopefully set this third series of radiation apart from the two other radiation treatment series I have had over the past three years...

Next Steps? Likely to include a new session of chemotherapy treatments to keep my disease from spreading, and hopefully kill it all together. In a couple of weeks, I have an appointment at Moffitt hospital ("H. Lee Moffitt Cancer Center"-the proper name) to check MRI images of how the tumors reacted to the radiation. After that, I should meet with my Neuro-Oncologist there and determine what the best type of chemo drug, and dosage for me. For all intents and purposes, Laura and I should be free of medical appointments, although she does have a dentist's appointment this afternoon.

As for me, I still plan on submitting more details about radiation treatments,soon. I have a lot to talk about...

06/23/09 - Radiation Treatments

2009-06-23T08:41:00.003-05:00

Well, I've been through a week and a day of Radiation Treatments. They are administered on every business day (5 times per week). Although my doctor hasn't decided the total dose yet, he said there will likely be 20-22 treatments. I'm not receiving any chemotherapy during radiation, but I may receive some afterward.

First, my brain tumor is treated. A "field" is a dose of radiation - an amount and position to administer it to. My brain receives 5 fields. I lay face-down on a table and the radiation machine can move in a circle around me. The table I'm on can also move.

My Spinal Tumor is also treated in the same session as my Brain Tumor. It receives 4 fields. In total, both the treatments take about 15 minutes. I can't feel them, although when certain parts of my brain are "shot," I can see a blue light even if my eyes are closed. I can also smell a strange "burning" scent, even though it is not there. Weird...

I hope to add a more detailed Radiation post in the near future...

06/08/09 - Radiation Simulation

2009-06-22T05:48:00.007-05:00

Posted on 6/22. I had a Radiation Simulation performed on 6/8/09. In the past, I had likened it to a "dry-run," but it is more than that. Most of time is used to line up any positioning references to my treatment areas. My "treatment areas" are viewed via CT Scan (CAT Scan).

Radiation's CAT Scanner
Lining up my body to the image created by the CAT Scan is done via a mask, and/or small tattoos. They are aligned with laser targets so that the overall system "knows" where my body is. In addition, the actual Radiation Machine takes X-Rays once I am aligned by the lasers to add even more precision to the process...

Aligning reference lasers with CAT Scan
When my brain tumor is treated, I am face down. The Radiation Technicians made a new mask for me. One can be seen by clicking "here", click the "back" button when you are done looking at the example. The laser targets (for alignment) are blue plus signs. My newest mask only covers the back of my head, not the front of it and my torso, as the example shows.

As I mentioned, another way to align my body are tattoos. In the following picture, I put large green circles around them. The Radiation Technicians used a blue ballpoint pen and smaller circles to highlight them... In the red circle is a bruise from falling down. In the yellow circle are some injuries from wrecking my recumbent tricycle a few weeks ago. It turns out that having one wheel in front of two is not a very stable arrangement... On my head, you can also see the scar from my initial brain tumor surgery in the early fall of 2006.

My tattoos, circled in green
Of course, I tried to keep my tattoos up with the latest trends, but alas, they are only small blue spots, the size of this period ->.

06/06/09 - Palm Harbor Festival

2009-06-20T10:33:00.008-05:00

Posted on 6/20 - back to the "delayed" posts (you can easily tell the delay if the "posted" date is substantially greater than the date in the entry title - for example, it's 6/20-6/6=14 days here)! Remember that on Friday, June 5th, the Tumor Board at Moffitt Cancer Center had determined that I had a Spinal Cord Tumor AND a Brain Tumor. This indicated a spread of cancer that was not good news... So, here is what Laura and I did the following evening, 6/6, which was a Saturday.

A local "historic downtown" area was having their annual Parrot Head (Jimmy Buffet's Fan Club) Festival. The "downtown" area of Palm Harbor is only about 1.5 miles from our house. We ended-up going there to forget about a couple of things...

First, we had dinner at the Thirsty Marlin restaurant. My special was awesome, and Laura's meal was good also. Big Monkey tagged along...

Big Monkey and Laura
While we were waiting for our food to come, Laura took a picture of Big Monkey demonstrating how he would dominate a hammer-head shark.

Big Monkey dominating a shark
After dinner, we walked around the festival. There were a few little art booths, and I purchased some items. There were a lot of people at the festival. I was having a hard time negotiating the crowds, so we left shortly after browsing the art.

Palm Harbor Parrot Head Festival
All in all, it was a nice evening...

06/18/09 - Brain Tumor MRIs

2009-06-19T05:23:00.004-05:00

Posted 6/19 - quick for a change! I saw my Radiation Oncologist last night, and he pointed out my brain tumor on my MRIs. Again, there is currently a tumor in my brain as well as one in my spine. They are both being treated by radiation therapy.

MRIs of my Brain Tumor
Back to reporting more out-of-date items...

06/02/09 - Buffalo Humps and Moon Faces

2009-06-18T11:21:00.007-05:00

"What's up with the double-chin?" That's what my brother said when he visited a few weeks ago. He likely hadn't seen me since Christmas. When I was at Moffitt on 6/02, I just had to ask my Neuro-oncology PA about it. I had also noticed that there appeared to be more fat cells at the base of my neck when you look via MRIs.

She confirmed that it was a side effect of taking steroids (more on those in a separate post to come). Taking them would likely cause me to have a "moon" face and "buffalo hump." She confirmed that mine weren't that bad. I've been taking a daily dosage of steroids since my March hospital admittances (3). Steroids prevent inflammation, so when I was having issues in March, my chemotherapy drug dosage was reduced and my steroid dosage was increased to taking at least one per day...

Buffalo Humps. Apparently, a fatty deposit that will build up around your shoulders if you take steroids often. In the attached MRI images, you can see the fat cells as white "blobs" (a highly technical term, :) ). See, I thought something was going on there...

Buffalo Hump, note dates
Moon Face. Hmmm... I didn't notice this one until my brother told me. Comparing a picture of my face taken last August 13th, versus one taken at Moffitt on June 2nd, the difference is more apparent.

Moon Face. Again, note dates
Just another reason to hopefully get off of the steroids. Unfortunately, they do appear to do well at reducing inflammation, which has worked well for me in the past...

06/02/09 - Intrathecal #8

2009-06-16T13:28:00.007-05:00

Posted 6/16. So, we spent a full day at Moffitt about two weeks ago. First, I had an appointment to have my blood drawn, then an appointment to have MRIs of my brain and spinal cord (considered to be a total of four MRIs - it lasts a minimum of 2.5 hours), and finally had an appointment to meet with my Oncologist and discuss the results of the tests. The appointments and the commute to Moffitt pretty-much took-up the whole day...

By the time we finally made it upstairs Moffitt's Neuro area, my Oncologist's Physician's Assistant (PA) met with us first to administer Intrathecal Chemotherapy dose #8 of 10. She does a great job of it, and is always quick to answer our questions. Unfortunately, that day she had to break the news to me that one of the MRIs showed a tumor on my thoracic spinal cord. Instead of administering Intrathecal #8, she used my Ommaya Reservoir to draw off some Cerebrospinal Fluid (CSF) to examine it microscopically for signs of cancer spread (called a Cytology report).

The PA extracting some CSF
After she drew off some CSF, told me about my cancer spread, and answered some of our questions, I met with my doctor. He basically verified everything. So now I have a tumor near my T9 vertebrae in my spine. The medical experts said that the T9 vertebrae is about the level of my belly-button, but it appears to be higher on the MRI, although I won't argue with them...

MRI of my spinal tumor
Two days later I had a preliminary meeting with my Radiation Oncologist. He discussed a potential plan. The tumor is around the center of my spine, so he planned on irradiating it lik he had done with the tumor discovered in my neck region on 9/9/08.

Three days later, on Friday 6/5/09, doctors discussed my "case" at Moffitt's Tumor Board. Apparently, the doctors meet once per week and discuss the most effective ways to move forward with treatment options. They basically agreed with what my Radiation Oncologist had told me the day before.

The PA called to give me an update after Tumor Board. Oh yeah, she said that the MRI shows a brain tumor also. It is located in the third ventricle of my brain. Of course, I have looked at a copy of the MRI, but I can't pick it out, so I won't post the MRI until I'm sure of its location.

The brain tumor is in my third ventricle
So, I spent the weekend with couple of things on my mind - literally...

06/13/09 - Blog Issues...

2009-06-13T04:10:00.003-05:00

Some of the hyperlinks to the right (such as my blood counts) do not work at the moment. One of the "projects" that "prevented" me from blogging was getting a new Internet Service Provider and web host. So, I basically have to figure out how to use their web "space" to publish my relatively small amount of data. Hopefully, I will get to that soon... The small calendar on my blog will normally be fairly accurate as its link doesn't change much, and I usually update it much quicker than my blog.

04/28/09 - Intrathecal Chemotherapy #7

2009-06-13T02:57:00.012-05:00

Posted 6/13. Way back on April 28th, I had Intrathecal Chemotherapy #7 successfully performed. Yes, I have not posted since then. I have had a lot of other events and "projects," and my blogging seems to be the first item to lose priority... Anyhow, here is my post from that event, and I hope to get more information up here soon.

Of course, Intrathecal #7 was delayed about a week, I had posted about that before. It was basically another week to help my body recover more from treatment #6, since I basically had three hospital admissions during March. When Intrathecal Chemotherapy #7 was finally administered, I'm glad to say it was a fairly insignificant event (hindsight being 20/20).

Here is a photo of my Neuro-Oncologist Physician administering Intrathecal #7. Once again, it is a fairly simple process (if you have the proper skills), shave the area of my scalp immediately above my Ommaya Reservoir, clean it, put in a needle, extract some CerebroSpinal Fluid (CSF), inject the intrathecal drug, and remove the needle.

Intrathecal Chemo #7 being injected
Once the Doctor administered Intrathecal #7, we talked a little bit. He is going to leave Moffitt for what should be a better opportunity at a hospital in Orlando. He has been fore warning us for months... Orlando is about 2 hours away, so we may visit him in the future, but Moffitt will certainly remain my principal hospital for treatment. At about an hour, it is far enough away... Seriously, best of luck to my previous Doctor (he's now in Orlando).

As part of a "proper send off," he did take advantage of holding Big Monkey, and having his photo taken with him. Of course, unbeknownst to him, Big Monkey did explore the entire doctor's office while we were waiting... Yes, more than one of the drugs that I take as part of my treatment makes me kind of crazy, but Big Monkey is real...

Dr. Chowdhary, Big Monkey, and me
When we were done at Moffitt, Laura and I again went to Jason's Deli. We have a "usual" order now. The Ranchero Wrap. Grilled chicken, cheese, jalapeno and bell peppers in a wrap with chips and salsa on the side.

A good sign...
Besides there ice cream cones, I also like their mini-corn muffins. I'll usually eat a few of them before I embark on my main mission of eating 4+ ice cream cones. I can't remember exactly, but I probably had 5 'cones that night. Hey, they're small...

Corn Muffins need to be sampled as well...

04/21/09 - Jason's Deli

2009-04-28T07:06:00.004-05:00

Posted 4/28. Jason's Deli . Very good food. There may be one near you. You can eat fairly healthy choices. In fact, when we went there last week, they were displaying some type of award on our table claiming that they were one of the top ten healthiest restaurants you could attend. (In the photo below you can see a reflection in one of the doors of me taking it.)

Outside Jason's Deli
They also have a salad bar. Thing is, some items are free to the regular patrons. I especially like their mini corn muffins. I'm also addicted to their soft-serve ice cream cones. They aren't special, but I usually eat at least 5. Yum!

Ice Cream Cone #6 from last week
We will likely go there for dinner after my chemo treatment today.

04/21/09 - Moffitt Media

2009-04-27T21:24:00.009-05:00

Posted the morning of 4/28. I took a few pictures at Moffitt Hospital last week, which I am posting now. Besides helping people with medical issues, it is a very nice place, so here is a chance to see some of it...

GPS path to Moffitt
It takes Laura and I about an hour to get there. Sometimes it is a lot more sometimes it is a little less. On the GPS track above, our house is at the left end of the green track and Moffitt is at the right end. There are a couple of little detours we took near either end to avoid traffic pile-ups...

Moffitt's Slogan
This is a picture of a large slogan posted on one of Moffitt's parking garages. It's pretty much the first thing we see when we get there.

Me at the Neurology Clinic
Me outside the Neurology Clinic. Moffitt just moved this from a smaller area. Behind the glass door is the waiting/check-in area, which is very nice and comfortable. I don't have any pictures of the "consultation rooms", but I will likely have some after today. They are incredibly nice also. Some naysayers may construe that Moffitt is spending too much money on their decorations/furnishings, but I am sure that it creates a special environment, where patients can feel more comfortable and relaxed for a moment.

Inside one of Moffitt's Lobbies
The above photo is one of Moffitt's lobbies. This is usually where we enter...

Outside by one of Moffitt's garages, in a courtyard type of area
Outside the same lobby. This area is by a parking garage, which is tended by free valets. We don't really like valets, but at least they are at a hospital, were they might assist patients.

Another Moffitt building across the valet area
Across the "courtyard" from the valet waiting area. Another building (which I have not entered) with modern styling. That is it for now with Moffitt photos...

04/21/09 - Intrathecal Chemo #7 - Delayed

2009-04-27T19:54:00.003-05:00

Posted 4/27/09. I was scheduled to receive my seventh intrathecal chemotherapy dose last Tuesday/ 4/21. My Neuro-Oncologist gave me the option to delay it for two weeks, given my recent issues. I chose to delay it a week.

Why a week? Well, my COBRA health insurance will run out on April 30th - two days after my rescheduled intrathecal chemo tomorrow (the 28th). After that, I may be in a state of "health insurance limbo" and it's definitely enough risk that I don't want medical expenses during that time. Besides my COBRA health insurance, I also have Medicare Parts A and B, so I will at least have those two as a back-up plan. I'm trying to get on Laura's medical insurance, which is likely my best option for coverage.

Medicare is a different kind of animal. If it becomes my only health care, I will likely have difficulty obtaining a Supplemental (Medigap) plan. That is a type of plan that picks up a lot of other medical expenses that parts A and B do not cover. Unfortunately, it caters to those that are 65+ (I'm disabled), supposedly people diagnosed with cancer over the past TWO years (I was re-diagnosed in September 08) aren't entitled to Supplemental coverage, and having more than 2 hospital admissions recently (I've had 3 admissions in last month or so). There are some questionable loopholes to get Supplemental coverage, but they are uncertainties that I don't want to risk. I will also need to get a Part D plan to cover prescription drug expenses.

Whether I'm able to get on Laura's plan, or I'm faced with selecting extra Medicare plans, I will keep Medicare Parts A and B. I do have to pay for part B, which some may consider to be extraneous, but once you have it, it can be difficult or impossible to reinstate if you cancel it.

04/17/09 - General Update

2009-04-17T07:40:00.002-05:00

Well, I've been busy here on my end. I take a low dosage of steroids (decadron) every day to combat any bad reactions such as headaches, but they do disrupt my sleep a lot. I can't say that it's just the steroids, it may be me just wanting to do more. It is still difficult for me to concentrate on my health (although I still try), because there are so many things I want to do. Albeit in a slow manner, as I technically have many "physical" issues and side effects...

For instance, my next Intrathecal Chemotherapy is scheduled for next Tuesday, April 21 at 3:30. I kind of forgot about it until I was looking at my calendar last night because a package is supposed to be shipped to me on April 22nd... And the April 21st medical appointment has been in the "forefront" of my mind. 'Need to slow down again...

FYI, but I should hopefully post fairly quickly about next week's chemo.

03/25/09 - Bike Ride

2009-04-05T15:49:00.004-05:00

An example of a recent activity that I should have approached differently...

On 3/25, I rode my recumbent tricycle and walked some. All told, about 18 miles. How do I know? I had a GPS with me. My father did tag along with me.

My GPS path
My path is the green line. My origin is at about the right end of the path, and my destination is at the left end of the path. I forgot to put on sun-block, and my forearms and lower legs are still suffering the consequences (peeling now).

I managed to take a few photos along the way.

Kayak Rentals, Dunedin Causeway

Honeymoon Island, my planned destination

04/01/09 - Hospital Tests

2009-04-05T14:55:00.007-05:00

This post is going to list all of the tests I've had while in the hospital over the past few weeks. Their results have ALL been positive! End result, it would seem that I need to concentrate even more on my health, try not to be so ambitious, and push items aside that I just can't do while treatment is still ongoing. I need to do less stressful things and try to prevent negative medical episodes from occurring. Hopefully, knowing that the outcomes have been good, I will be able to prevent bad things from happening during my future treatments.

Me in A hospital bed on 4/2/09
One of my doctors stopped into my hospital room the night of 4/1/09. I have previously mentioned that they have to draw off some of my cerebrospinal fluid (CSF) before they can administer Intrathecal Chemotherapy. They look at this sample microscopically for any signs of cancer spread (called a Cytology Report). Usually, I just wait until my next Intrathecal treatment in a month for results, but he knew already, and the results from my 3/19/09 session were negative. Good news #1.

An MRI of my brain taken on 3/10/09
Above are two MRI images of my brain taken on 3/10/09. Although I put red circles around part of the image, they are more historical. That area seems to have some sort of anomaly, possibly some sort of scarification. The scans are otherwise good. Good news #2.

While in the hospital on 4/1, I also received my second EEG (scan down to a nearby post if you would like to see my first one). My EEG was also negative. Good news #3.

An MRI of my spine taken 4/1/09
On 4/1/09, I also had MRIs of my spine taken. It actually takes 3 MRIs to capture images of my entire spine, that's why "MRI" is plural... The red circles in my neck show where the tumor had spread to. Once again, it is gone, first eradicated by radiation treatments, now being further attacked by chemo. Good news #4.

End result, all good tests. I was the boy that cried wolf. As I said earlier in this post, I guess I need to be much less ambitious about other "projects" and concentrate more on my health. Thanks for everyone's well-wishes. I do appreciate them! I will hopefully post some replies soon...

04/02/09 - Hospital Release

2009-04-03T04:00:00.003-05:00

Hmmm... I guess this post needs to be very positive... First of all, thanks to everyone who left comments on the blog, sent Emails, or attempted to call (even though I was in no position to answer a phone in my hospital bed). All of the medical tests turned out negative - an MRI of my spine, an EEG, analysis of the Cerebrospinal fluid (CSF) withdrawn at my last chemotherapy on 3/19/09. Great news!

Anxiety got to me. It was complicated a bit by the drugs I was on, but I don't want to blame them, but myself. I hope I can prevent this from happening in the future, and I'm going to have to concentrate more on my health to do it. I had an adjustment to my daily medications (there aren't many) and my chemotherapy dosage. Hopefully, the severe headaches and other symptoms will subside.

As expected, I was released from Moffitt hospital late yesterday evening. A whole day of "hurry up and wait." That IS what I expected as my doctors needed to analyze my test results and I wasn't on their schedule per se. I had a room, so other patients came before me, I pretty much expected the whole day to slip by before discharge, and finally getting the positive results from the tests around 5:30PM was really just "icing on the cake."

I felt I needed to get this update out quickly, but expect another post to follow shortly with portions of my MRIs and a picture of me in my hospital bed (yes, if it were up to me, I would have a camera and a tripod to take all kinds of pictures, but I digress...)

Thanks to everyone again for your support!