I want everyone to know, regardless of the serious tone of the introduction, I haven’t lost any of my sense of humor, and my outlook is 100% positive. I originally wanted the blog site to be named “itsatumor”, a twist on the Arnold Schwarzenegger line in Kindergarten Cop, and have a clip of that scene at the beginning. However, I was having a difficult time finding a legal download of it, and if you know me at all, you know that just wouldn’t work.
You’re probably going to get to know me better than you ever wanted to. I normally don’t share my thoughts and beliefs much with others, but we’ve been overwhelmed with so much love and support from so many people, literally from around the world, that I feel a responsibility to open up and share.
As I’m sure you can imagine, I’ve had a lot of time to think, so my thoughts have gone everywhere. A lot of what I share may come across as serious, but I promise to try and keep it light. I love to laugh and can find humor in most anything, including this.
A lot of time seems to have passed and some memories are already getting a little fuzzy, so let’s get started.
I’ll begin in December. Although some of the events have no apparent relation to the diagnosis, it may be interesting to know some of what was going on leading up to it.
Towards the end of December, I tweaked my knee and had some intermittent pain. It seemed to be getting better, and a couple of weeks later Tida and I went for a short run at English Landing Park in Parkville. Everything seemed fine for a couple of days, then I started getting pain in the knee that would go up to the thigh and hip. I was able to manage the pain with over the counter pain medicine, but it would wake me up at night and would take about an hour for the pain medicine to kick in, so sleep was starting to suffer and there were times at work that the pain would make it hard to concentrate.
This went on for a couple of weeks, and when there wasn’t any improvement, I broke down and went to the family doctor. During my exam, it was discovered that my blood pressure had surpassed hypertension and moved into the geyser range. Women and children were running for their lives, sure I was going to blow. Needless to say, the good doc didn’t really care about me knee anymore, so we started treating the blood pressure. We got it in the manageable range, but then I started experiencing some pain in the neck and across the top of my right shoulder. I attributed the neck and shoulder pain to overcompensating for the knee. I’ve had neck pain for a long time, so it wasn’t a real concern.
It’s now the middle of January, my knee still hurts and now I’m trying to manage the neck and shoulder pain too. The end of January I enlisted the help of a chiropractor for the neck and shoulder pain. Treatment seemed to help at first, but as time wore on, treatments seemed to cause more inflammation in the area. The first week of February, the family doctor sent me to an orthopedic group to look at my knee. I got a cortisone shot in the knee and the discomfort was almost immediately relieved. The shot was on a Friday afternoon and the following weekend the neck and shoulder pain was much less too, so I was hopeful the cortisone had reduced the inflammation in the neck and I would finally have some relief.
As February progressed, the neck and shoulder pain increased, keeping me awake at night and again making concentrating at work difficult. Over the counter pain meds again were no help, and the chiropractic treatment was having no result. Around the middle of February, I noticed my right arm was losing some strength. It was minor at first, but was progressing to the point that I couldn’t reach for the headset for my phone at work with my right arm, so I had to reach around with my left to grab it.
The weekend of February 21st was rough. We went to a volleyball tournament to watch one of Tida’s cousin’s daughter, and she was constantly rubbing my shoulders for me trying to offer relief. That night, two of our nieces spent the night with us, and if they hadn’t been there I probably would have gone to the emergency room then. Sunday was okay, but I just lay around all day, mostly on the floor because it seemed the most comfortable.
On Monday, February 23rd, I woke up and was getting ready for work when I announced to Tida that I couldn’t do it. Pain was almost unbearable, I had almost no use of my right arm, and my left arm had started to lose strength. I guess this was a real eye opener to Tida that something was really wrong, because she says I never miss work. What? Anyway, I got another appointment with my family doctor, he checked me over, prescribed some pain medicine and told me if it didn’t help, he’d make a call and get an MRI scheduled. The pain meds, supposed to be taken every 6-8 hours, numbed the pain a little for a couple of hours, but then the pain kicked back in again.

Tuesday, February 24, 2009. Tuesday morning I asked Tida if she could take me to the doctor. I was to the point where I didn’t really trust the strength in my arms to drive. I was looking for an acupuncturist now, anything to relieve the pain. I’d decided that if I couldn’t get relief I was going to the ER. I found a chiropractor just a couple of miles from our house that also performed acupuncture and was able to see him in the morning. I’m not going to disparage any of the other medical professionals I’d been seeing, but this man was different. I’d never met him, and yet in the short 15 minutes he spent with me, I felt like he found out more about me than any of the others had in the weeks I’d been seeing them. He asked a lot of questions, performed a full neurological exam, and concluded that he wasn’t going to do anything to me. Something was attacking my neurological system, and it was in my best interest to get an MRI as soon as possible, maybe even go to the ER.
This was an emotional moment for me. I just wanted some relief, but as things had progressed over the weeks, it was becoming apparent to me that something was really wrong, and I had even started researching diseases that attack the muscle system or anything that indicated neck or shoulder pain as a primary symptom. So the acknowledgement from someone else that there was something happening to me was surprisingly emotional for me.
We went to the ER at St. Lukes Northland, told them my symptoms and requested an MRI. The ER doc said they didn’t normally perform MRI’s in the ER, they usually request one and schedule it for a future time. After listening to my symptoms and witnessing the loss of functionality in my arms, he said we needed an MRI.
By now we know what the results were. There was a mass on my spine, centered on the C5 vertebra, spreading up to C4 and down to C6. They sent the MRI results to St. Luke’s Plaza, set me up with a room and sent us to the Plaza. Things are starting to move fast now. We got to the Plaza, told them who we were, and they just took us directly to the room. Nurses came and checked vitals, then we waited for the neurosurgeon. We met with him around 5:00 p.m., and he described what he’d seen on the MRI. He explained the process for performing the biopsy. He’d make an incision in the throat and go straight through to the spine. That’s where he could retrieve most of the tumor for samples, and cause the least damage to the spine. He was willing to perform the surgery that evening, but he wanted the pathologist standing by to review samples immediately in case he needed to retrieve more. The pathologist wasn’t available that evening, so surgery was scheduled for 7:00 a.m. Wednesday. So now we try to relax and make those excruciating phone calls to family. The hospital staff was kind enough to get one of the scarce cots available so Tida could spend the night. She still didn’t sleep too well, but I’m sure much better than if she’d come home.

Wednesday, February 25, 2009. They started getting me ready for surgery around 6:00 a.m. and had me in the O.R. by around 7:00. Surgery went fine, they got the samples they needed, and closed me up. After conferring with the pathologist, the surgeon reported to the family that the samples indicated the tumor was malignant. I understand that was a bit emotional for the family, glad I wasn’t there for that! When the doctor came to the room after I was out of recovery and explained everything to us, including informing me of the malignancy, it wasn’t really a surprise. I’d pretty much known with the onset of my symptoms, that something was going on in there. The doctor explained they didn’t know what kind of cancer it was yet, but they’d perform additional testing and hope to have an answer Thursday. He explained they were going to start me on a treatment plan of steroids and 5 to 6 weeks of radiation to shrink the tumor and any inflammation. The important thing at this time was to get pressure off the spinal cord because any loss of blood flow to the cord could result in permanent damage and loss of functionality of extremities. So we started intravenous steroids and had my first radiation treatment that afternoon. Before the treatment I had to have a mask made that covers my face while in treatment to make sure my head is in the exact same position each time and doesn’t move. It was made by pouring a warm plastic resin over my face, then forming it around my face as it cooled. I’ll post pictures soon. I also had a CT Scan of my major organs. It was explained that spinal tumors, 90% of the time, start somewhere else in the body, so we had to determine if there were any other tumors that needed to be treated. The scan came back clean; once again I’m in the lower 10%! What a blessing! Wednesday was also exciting because I was fortunate enough to be the proud recipient of a catheter! Men, I won’t go into detail, but you can imagine the thoughts going through my mind when I saw the size of that tube!
I couldn’t ask for a better family. Everyone is so supportive and truly concerned. I’m acutely aware of how much more difficult this is on everyone else at this point than it is on me. One of the more touching moments for me today was when my mother-in-law gave me a hug with tears streaming down her face. She normally doesn’t show any emotion and it was overwhelming to see her like that.

Thursday, February 26, 2009. It’s really hard to rest during the night between the steroids and nursing staff coming in every 3 to 4 hours. To help out, the door to the room developed issues Wednesday, and wouldn’t close properly. We informed staff, but nothing happened during the day. That night, there was so much noise outside the room, opening plastic trash bags, noisy carts up and down the hall, and it even sounded like they were constructing hospital beds at one time, that it was almost impossible to sleep. Finally around 2:00 a.m. someone came to fix the door!
Radiation treatment number 2. We’re told side effects of radiation are red, irritated skin at the treatment site, fatigue, dry skin, and in my case because of the treatment site in the neck area, I could develop a sore throat and have difficulty swallowing. So far, nothing! The rest of the day is pretty much nurses checking on me and visiting with family. I saw a physical therapist and occupational therapist to see if I’d need outpatient therapy. It was pretty quickly determined that I’d need occupational therapy since I can’t use either arm much at all. Tida’s been feeding me because I just can’t lift my arms. I got fitted for a neck brace. So excited! The surgeon says it’s precautionary and I should need it for 2 to 3 weeks. Quite a fashion statement. They removed the catheter, and around 6:30 p.m. the surgeon came in to say I could be discharged if they could get the paperwork done in time. The nurse said they normally didn’t discharge after 7:00. She had one other release before me, but she’d stay if we wanted to go home. We decided that it would be so late that we’d just stay the night and leave in the morning.

Friday, February 27, 2009. Got up and finally showered! I needed help though, because I still can’t use my arms. Nurses check me over, I get my 3rd Radiation treatment and we start processing my discharge. Finally got wheeled out and headed home around 10:30 a.m. We got home, settled in, made some phone calls and rested. That evening we decided to order dinner from our friends at Stone Canyon Pizza in our neighborhood. Tida went to pick it up, and while she was there got a phone call from a friend. She got a little emotional and the Stone Canyon ladies noticed and checked on her. When they heard our story they wouldn’t let her pay for our dinner. It was a personal gift from them, not the restaurant. Again surrounded and supported by great friends.

Saturday, February 28, 2009. I got a pretty good night of sleep, the best since this all started. I have weekends off from treatment, so we stayed home and relaxed. My mother-in-law dropped off some food, and just had a nice relaxing day. I called my nieces Josie, Jadan and Ava today. They’ve been worried about Uncle Jimmy and wanted to hear my voice. They’re all at different stages. Ava, the youngest, wanted to know if I got a shot since I was sick. When I told her I had she said okay and wanted to know what I had for breakfast! I don’t think Jadan, the middle one is sure what to think. I can tell she’s worried but is trying to avoid it. Josie is very caring and sensitive, and we had a nice visit. I’m feeling strong, pain free for the first time in quite a while, and side effect free.

Sunday, March 1, 2009. Not as good a night’s sleep. I think the steroids are really messing with me. I can sleep for a few hours, then I wake up for a few hours, then maybe fall back asleep for an hour or so before waking up for good. Today is Josie’s 10th birthday party. I think it’s important for me to go and show them and my nephew Zachary I’m okay, neck brace aside. We had a really good time, but I was pretty tired by the time we left. The occupational therapists gave me some exercises to do at home daily between outpatient sessions. The strength in my arms is already returning and even though it’s only been 2 days, I’ve made progress each day.

Monday, March 2, 2009. Treatment #4, first time as an outpatient. We met with my Radiation Oncologist and went over the treatment plan so far. We still don’t have any word on the final pathology, but found out they’d sent the samples to the Mayo Clinic on Friday. Hopefully some news tomorrow. All the staff at the treatment center is great, they’re always smiling and upbeat. One of the things Tida and I have become more aware of is all the people that are suffering in one way or another, and of course there’s no shortage of that at the center. It’s sad to see and realize just how many people are sick, but it’s also uplifting to see the smiles on their faces and the spirit in their eyes.

Tuesday, March 3, 2009. 5th treatment and still no side effects. We were expecting news from Mayo this morning but didn’t get it. After treatment we visited my parents so they’d see how much better I’ve gotten already. The home therapy exercises have really helped the strength in my arms, and I think it was good for them to see me up and around and still laughing.

Wednesday, March 4, 2009. 6th treatment. Still no news from Mayo. Tida’s pretty upset about it; she just wants to know what’s going on. The doctor reassured us they were working on it, and that we were on the right course because I’m stronger and pain free. He told us they’d presented my case to a Neurological Conference and everyone in attendance agreed the right treatment plan was being taken. Before my treatment this morning we took Tida’s cousin, wife and 2 month old daughter to the airport for a trip home to Thailand. Yes, I said before the treatment. They needed us at the house at 4:00 a.m.! One of the benefits of not sleeping well was I woke up at 1:30 anyway, so I was ready to go!

Thursday, March 5, 2009. Treatment #7 and still going strong. After treatment I went in to work today. I wanted everyone to see I was doing okay. I’d been keeping up via email and checking voice mail, etc., but it’s just not the same as being there. Good thing I went in. Guess there were some crazy rumors out there. Cancer throughout my body, 19 days to live, confined to a wheelchair. You gotta love the rumor mill - how does that get started? Anyway, it was great to see everyone. I work with great people that care about their work and the people they work with, and they make it easy to concentrate on taking care of myself knowing they have everything under control. I worked about 3 hours and got tired, but after I got home I felt great. A very therapeutic visit.

Friday, March 6, 2009. Treatment 8 of 22 down. Still feeling strong but just not sleeping for more than 3 to 5 hours a night. Right now that’s the only thing I’m really watching because I know how important rest is to maintain strength. I had my occupational therapy consultation today and the therapist was amazed at the progress I’d made since the evaluation in the hospital. We set a 4 week schedule for therapy, twice a week, but she didn’t think I’d need that much. I’ve even made enough progress that she added weights to the home exercises!

Saturday, March 7, 2009. I have weekends off from radiation, so this is a normal weekend. We worked out in the yard, or rather Tida worked in the yard – all day. I helped picking some stuff up, but only lasted about an hour, before needing to rest.

Monday, March 9, 2009. Finished treatment 9, still feeling good, and still no news from Mayo. I had my first occupational therapy session today. The therapist was again impressed at my progress since the evaluation Friday. I’m still not sleeping very well. I was supposed to see the doctor today and was going to discuss it with him, but he had an emergency and was unavailable.