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

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

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!

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

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...

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

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

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

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... :)