Today was occupational therapy and follow-up with the hematologist. OT went well. The right arm is still weak, but testing was positive. They grade on a 1-5 scale, 5 being "normal" strength, being able to resist pressure. All tests came back at least 4, so I only have one more OT session, then continue to do home therapy twice a day!
The follow-up with the hematologist was mostly positive too. The results from the biopsy didn't show anything that would give us definite answers. The thought right now is that there was a lesion at T12, but the steroids may have treated the lesion, and that's why nothing showed up. The plan right now is no additional treatments of any kind, follow up with an MRI in 2 1/2 weeks along with more blood work, and see what shows up then. I'll be tested quite regularly for awhile, but I'll gladly go through periodic testing rather than having to deal with treatments.
I've got a break now from doctors and treatments, so I'm going to start living a more normal life, meaning I probably won't post much during that period. I'm sure no one wants to hear me talk about work everyday!

I'm officially done with radiation treatments on the neck! We met with my radiation oncologist after my treatment and he thought we'd be finished, but he was presenting my case to their conference later in the day and he wanted input from other docs. Based on everything they knew, it was agreed that we should do no more treatments! Also, I'm being weened off the steroids pretty quickly - I should be off them completely next week. They say the fatigue could really set in then, so I'll have to watch it.
So now we try to figure out what's going on in the T12 region of the lower spine. We got some news on that today too, but it was the typical news we've been getting all along. They said that nothing "evil" showed up on the biopsy results, but they don't think they got enough tissue samples. What?! Everything we went through that day, and they still didn't get enough samples?
The medical/hematology doctor was presenting my case to another conference this afternoon, and we anticipate that I'll need to get another biopsy on T12, but it'll be done with a different group than the last one. We meet with her tomorrow, so we'll find out more then.
Thankfully I have work. Another 6 hour day and I got a lot accomplished. It's really good to get in there, I can't wait to start working a more normal schedule.

Today was treatment 21 of the scheduled 22! They still may add 2 or 3 "booster" treatments depending on the results of yesterdays biopsy, but we won't know for sure for a few days. I think I forgot to mention that the doctor started weening me off the steroids Monday. It should help me sleep - I got 5 hours sleep last night, a long time since I've had that much - but they say I could also have a lot of fatigue going off the steroids. We'll see what happens, I just want to get off them.
I had another good day at work. Put in a little over 6 hours, had a couple of meetings, got a lot accomplished and felt good.

Aaaarghhh!!!! What a day! First, it's been exactly 1 month since the tumor in the neck was diagnosed. I don't think I've ever had a more interesting and fast month, it's flown by and I can't believe everything that's happened.
Now today. It started out normal enough, with the 20th radiation treatment, then occupational therapy. We had a about an hour wait between therapy and the scheduled biopsy at 11:30. We showed up a little after 11:00 to check in, knowing by now that there's always paperwork to complete, and we just wanted to be on time and get the biopsy completed. We'd been told that this biopsy was supposed to be easier than the bone marrow biopsy, which took about an hour, so I was expecting to be done by 1:30 at the very latest. Anyway, we get to Radiology at exactly 11:30 so everything's good. Then we wait until 12:15 before they take me back to the prep room, where they draw some blood, ask some questions, and tell me to wait for a doctor. At about 1:10 an intern doctor came in to ask a couple of questions, but had no information because he's never seen this procedure before. Starting to get the picture? Finally at 2:00 the nurses rolled me into surgery and they started getting me ready. This process seemed almost chaotic. It sounded like there were 8 to 10 people in there hooking me up to all kinds of tubes, IV's, oxygen, patches and other stuff I wasn't sure about. I was lying on my stomach, so I couldn't see what was going on. They gave me meds that were supposed to sedate me, but I was almost completely alert throughout the procedure. When they were done, again I was alert, and asked the nurses if they could explain to me what the process was, and got the reply, "the doctor stuck a needle in your spine and withdrew 4 to 6 bone samples". Thanks guys, nice explanation. I never even met the surgeon that performed the procedure. It felt a little weird when it was happening. It was almost like there was a plunger - I could feel the needle, then I sensed the needle being pushed back and forth a few times with a little popping sound as, I have to presume, it hit the bone. The procedure took about 30 minutes. They had me rest in the OR for about 20 minutes, then moved me to a room at about 3:00. In the room I'm told that I'd be monitored for about 3 hours before being discharged! No way! I haven't eaten in over 20 hours now, am completely alert, and can walk on my own. They ended up feeding me, twice in the next 2 hours. They were supposed to check my vitals every 20 minutes until discharged, but they only checked them 3 times. They finally said they'd checked vitals at 5:30 and probably discharge me. Unfortunately I had just chewed some ice when they took my temperature and it wouldn't read, so the said they'd be right back to check it. At 6:10 we got the nurse and I told her I was going home, what do I need to sign to be discharged. Without a doubt the most frustrating day we've had so far.
The most disappointing part of it was the seeming lack of care today from the health care professionals. We've been so happy with everyone we've been in contact with in the St. Lukes system until today. It just seemed that everyone was distracted and didn't have the same level of care about their patients.
Regardless, the test is done, now we wait for the results. Hopefully we'll find out Friday.

I had a really good weekend and today completed radiation treatment #19 - only 3 more scheduled for now! Today was a "guilty" day. We've made some bonds with the other cancer patients at the treatment center. It seems there's a group of us that have the same appointment times daily and we've just come to be friendly and share something. This morning there were a couple of the ladies that were obviously in pain and suffering, enough so that they wouldn't give them treatment today. So there I am, dressed ready for work, feeling strong, and it just doesn't seem right to be viewed the same as these folks that are really suffering.
I had another good day at work, put in about 6 1/2 hours and felt great Tomorrow's a busy day. Radiation, occupational therapy, then a CT biopsy on the spine. The worst part is I can't eat after midnight tonight. I've been eating non-stop trying to maintain my weight, so not eating for over 12 hours plus having occupational therapy is going to be tough. I'll be putting it away tomorrow night!

Today was about the most "normal" day I've had since this whole thing started. Completed radiation treatment #18 this morning, then went to work. I got about 7 good hours in, got a lot done and felt great! You'll probably get tired of me telling you how great my staff is, but it just really makes me proud of how every one of them just steps up and does their job, no questions asked, no complaints. I think the best part of it is how everyone else at the bank is noticing all their work too, and their just getting so much respect!
So another good day, they just keep coming one after the other! Tonight we're going to an open house for a dear friend that just bought a new house, and we're looking forward to getting out and seeing some good friends.

Today was radiation treatment #17. They're winding down, only 5 more scheduled! I've mentioned I wasn't having any side effects, but now I've lost some of my taste buds. Not a big deal, but I really like my spicy, flavorful food, and I'm having a hard time tasting any of it. It seems like I need to eat almost constantly to try to maintain my weight, and not tasting all the flavor takes some of the fun out of it!
We met with the medical/hematology oncologist later in the morning to review results of the most recent tests. The most definitive answer we got was that I seem to be an enigma. The PET scan results had shown areas of cellular activity in both lungs and the 12th thoracic vertebra, which prompted the additional scans yesterday. The bone marrow biopsy came back negative, so that's a very good thing. All the blood and urine tests seem to be moving us away from any kind of lymphoma, another good thing, and all the results are indicating it's not multiple myeloma, which is incurable, so another very good thing. The doctor said she was surprised about the bone marrow results, she'd expected it to come back positive, and she was surprised about the the other areas of activity. Seems like she was expecting the opposite of what we got. They don't know what the spots in the lungs are. They're too small to biopsy, so we'll just have to monitor them right now and re-test often. The 12 thoracic vertebra has a lesion in the bone, and appears to be different from the tumor in the neck. So we'll get a biopsy of that area and try to determine what it is. If it's determined to be another plasma cytoma, we should be able to radiate it and hopefully be done with it.
The doctor really does seem to be puzzled because I show absolutely no symptoms of having any other issues. She'd expect pain and some loss of strength in the legs with the vertebra issue, and would expect shortness of breath and difficulty breathing with any lung issues. No problems in either area. They're presenting my case again next Thursday at their conference to get input from cancer doctors in all areas, so I keep getting a lot of attention.
All in all, the results were positive, leading us away from some really bad possibilities. I'm still feeling good, arms getting stronger every day and upbeat and positive!

Today didn't turn out exactly as we'd planned. It was supposed to be radiation treatment #16 followed by occupational therapy. After radiation, the radiation oncologist met with us to go over some of the early reports from the testing Friday. Early reports indicated the need for more tests. The tests required insurance pre-certification and a nurse review, so we waited for an hour and a half for the approval, then was sent to outpatient admitting for a CT Scan. During the CT, they inject you with a "contrast" that gets circulated throughout the body and turns you all warm and gooey inside!
We finally got home around 2:00 p.m. from the first test, caught up on some work and rested a little before heading back down at 4:00 to St. Lukes for an MRI. The MRI was scheduled for 5:00 and was supposed to take 30 minutes. They took me back a little before 5:00 and got me ready. They said there would be a 20 minute session, followed by another contrast injection-this one cool instead of warm, then another 10 minute session. If you haven't had an MRI, it's really noisy. It's like a jack hammer going off right in front of you face, and even with headphones on it's extremely loud. The first session seemed a lot longer than 20 minutes, but there's not a clock in that tiny tube and I just figured the noise was messing with my perception of time. When it came time for the contrast, they had a hard time finding a usable vein. I've had so many IV's, injections, blood samples, etc. since Friday there's not much left. It took about 15 minutes to get a vein for the injection, then we finished up the last 10 minute session. When I got out I realized in been in there an hour and 15 minutes! We finally got home about 6:45.
Another long day, but hopefully with the results from today and some more results from Friday's tests we'll get some answers for what's going on and a direction on how to proceed.

I didn't have any treatment or therapy today, so I finally got to get back to work for a day. It was good to be there, and it's great to see everyone just doing what they do. I work with the best staff I could ask for!
I was still feeling the effects of my long day yesterday, feeling pretty tired, but I got about 5 hours in and got caught up on a lot. Another good day!

Wow what a day! It started with the 15th radiation treatment at 8:15 a.m, then a visit with the radiation oncologist. Then I went to occupational therapy and totally got wiped out. I tested out with an increase in strength level from my previous visit, so the hard work's paying off! Then I went for a follow up with the neurosurgeon to check on the incision from the biopsy and my neck. I got released from my neck brace, more good news! Then we ate and hung out for a couple of hours before the next appointment. It was only 10:30 a.m., but I couldn't eat for at least 4 hours before my 2:30 appointment, so we ate when we could. The next appointment was a skeletal survey, which was simply 18 x-rays of every bone in my body.
The final appointment was a PET scan. Very interesting. They injected me with radiation sugar (I'm thinking I should be getting some superpowers soon from all the radiation I'm getting, hope I can choose the power I get!). They allowed 45 minutes for the injection to get throughout my body, then started taking more x-rays. The radiated sugars "light up" in the x-rays to show abnormal cell activity and clusters. It takes a few days to get all the results, so we probably won't know anything before Thursday, and we'll still need results from the bone marrow biopsy from Friday, so we still wait. All in all, a very long day, and I'm really pooped!

I had my 14th treatment this morning. I had to have one today because the St.Patrick’s Day events go right by St. Luke’s on Tuesday, so they can’t treat any outpatients that day.
Since it’s Sunday, I think I’ll share some of my spiritual side and things that are important to me. Hopefully you might see where I gain my strength.

I consider myself a fairly spiritual person, though that’s pretty hard to judge from my own point of view. I don’t know if that surprises anyone or not. I’m just an average person with a very personal, private relationship with God. I try to live my life and conduct myself in a manner that reflects that relationship without infringing on anyone else’s beliefs.
I’ve felt Gods hand in my life since I was a child. He’s guided me throughout my life, helped me through all my many mistakes, and never abandoned me. I know He’s always there.
God has blessed me beyond my wildest imaginations. He allows Tida and I to enjoy many worldly comforts, to the extent that many would think them extravagant. We’re thankful for these comforts and enjoy them daily, but they are simply possessions. As I said, they are enjoyed, but not treasured.

My treasures are my family.

My beautiful wife Tida has changed me and my life. She has a spirit unlike anyone I’ve ever known. She cares deeply about all people, but especially her family. She constantly recognizes the wonder and beauty of God’s creation each and every day. She’s made me a better person and I thank God for her every day. Many people thought we didn’t stand a chance together because we seemed so different – which we are! But God has helped us work together over the years so that we can use our differences to build a relationship where our differences complement each other. Through this entire ordeal, I’ve seen the love, concern, fear and hurt in Tida’s eyes, and I’d do anything to be able to take all those fears and hurt away. I absolutely love my life with Tida and could never ask for any more than we currently have. I look forward to our future together, growing old (in my case, older) together, and living a life of leisure and travel. Tida, thank you for sharing your life with me. I love you and treasure you more than you’ll ever know.

My family, parents and 3 sisters are my rock and foundation. As a child, they taught me love for God, and helped shape my morals and values. Many probably wouldn’t consider us a close family, only because we don’t gather often and I can go weeks or months sometimes between talks with my sisters. Some of that probably has to do with me being the only boy and being treated differently growing up. I’m sure there was a little animosity or hard feelings towards me due to that, and may still be, but they’ve never shown any of that towards me which just goes to demonstrate their own character and standards. Closeness in a family can be measured in different ways. In our case, whenever there’s been adversity, we come together and are there for each other. We know there is always love, support and strength waiting for us when needed. Thank you for your quiet, confident love and support in this and all things.

What can I say about Tida’s family? Like Tida and I, our families are quite opposite. My family is quiet and reserved. Do I need to say what Tida’s family is like? At first I think the differences were a little overwhelming for both of us. I was in shock because of all the noise and energy, and they couldn’t figure out what was wrong with me, I was so quiet. They have completely accepted me into their family, and like Tida herself, have changed me and made me better. They have allowed me to grow close to their children. Those that know me know what a blessing those children are in my life. They too make me be a better person; they put a smile on my face and joy in my heart every time I see them. I strive to be positive role model for them every moment I’m around them. I want each of them to grow to be happy, healthy children and adults, and will do everything I can to support them to that end. Thank you for accepting me into your family.

God and family sustain me and make me strong.

Throughout this journey, I’ve been blessed. From the moment of the diagnosis I’ve felt a calmness and peace that can’t be described. I know God is in control, won’t give me more than I can handle, and will provide for my every need.

Our attitude, and searching for and acknowledging God’s blessings can change our lives, and impact the lives around us. We have witnessed changes in others lives, and are constantly amazed at Gods love and mercy and how he works in our lives.

Tomorrow’s going to be a grind, so today I’ll rest and as always, thank God for all His blessings.

It's Saturday, not a lot going on, trying to keep things as normal as possible. I went to niece Josie's softball practice this morning. She's one of the new girls on the team, a lot of the others played on the same team last year. She did great! She excelled in all skills and looked like she was having fun. I'm so proud of her! This evening another one of our great neighbors is bringing dinner over for us. She's a southern girl who likes to cook the good southern food, so we're in for a treat. Can't wait! Later Tida's sister Brenda and her son Zachary are coming for a visit. It'll be good to see both of them; we never see them quite enough.
Since there’s not a lot going on, I thought I'd share Tida's pictures of radiation treatment today. Sorry about the pictures and narrative being separated. This google blog has some serious limitations when it comes to inserting and formatiing pictures.
The first pic is the door going into the radiation treatment room.
The radiation therapists get me on the table and prepare me for my “Hannibal Lecter” mask.
The mask is secured so that I’m in the exact same position for each treatment. Debbie and Christine are so great. They’re always smiling and happy, and I’ll actually miss seeing them daily when this is over.
Debbie fires up the computer and starts burning that bad boy up.
The whole process, from the time I enter the treatment room until I walk out only takes about 5 minutes.

Before we get started today, if anyone would like an email notification that I've added a post, rather than just periodically checking the site, you can email your request to jimallen224@gmail.com

You can also use that address if you'd like to send a comment to me. I'll warn you I'm not a huge email guy, so I won't respond to all messages, but promise all will be read. Also, please no forwarded stories or PowerPoint’s.

So this morning I had treatment #13, again with no problems. Tida's mom brought over some yummy Thai food I'll try to eat after the procedure - can't wait! The remainder of the morning was spent relaxing getting ready for the bone marrow biopsy.

I was on the wrong end of the process to know exactly what was going on, plus I was enjoying the delightful cocktail of paid meds, but Tida was there, so here's a very basic review of what happened (Tida's version would much more detailed and accurate, but this is what you get!)

The doctor needed samples of the bone marrow and some hard bone. A metal "tube" with a needle is inserted in the hip. The needle has a saw tooth to help work through the bone. For the bone marrow sample, the needle pops through the hard bone to get to the marrow, and then it's pulled out and put on slides. The doctor wanted 2 samples, but had to make 3 attempts to get 2 good samples. The process for the hard bone was similar, but the saw tooth end just ground up some bone, was extracted and placed on slides. Again 2 samples needed, 3 attempts to get them. There was some pain even with the meds, but it was very bearable. Tida took the pictures at the top pf the post during the process that shows the doctor getting both kinds of samples and the lab technician collecting them on the slides.

I'm just now starting to feel like I'm out of the "cocktail" - I couldn't even eat my Thai food, so you know something was up!

Tomorrow I'll try to post some pictures of the actual radiation room/treatment.

So today was supposed to be a pretty easy day. Start with treatment 12, no problem. 45 minutes later, occupational therapy. Noticeable improvement again in both arms, adding additional exercises and weights. Then we went to meet the new hematology/medical oncologist. The appointment was at 10:00 a.m. and we didn't see the doctor until after 11:00. The next 2 hours seemed like we were doing nothing but waiting, except for the time spent giving half my blood supply ( 5 tubes) I gave for lab work. The doctor confirmed that the final path report indicated either plasmacytoma, which includes other possibilities or plasmablastic lymphoma. I know, it doesn't sound much like a "final report" when it doesn't offer a definite answer. What that means is more testing. We need to determine if there are any other diseased sites before finalizing a treatment plan. Tomorrow I'll have my radiation treatment in the morning, then go back in the afternoon for a bone marrow biopsy. I could have the biopsy in the doctors office, no pain meds, or in the hospital with the good stuff. I always like to think of myself as a tough guy, but it didn't take me long to decide to to take the juice!
Then more testing next week. Monday I've got radiation treatment, occupational therapy, follow up with the neurosurgeon, a skeletal scan, and a PET scan. I actually get Tuesday off from everything! Wednesday has treatment & therapy and Thursday we review the results from all the tests.
Today was the first day in a while that I was really tired, and I think a lot of it was due to all the waiting we did. I took about a two hour nap and felt really good afterwards. This evening we went to niece Jadan's 2nd grade Dr. Seuss musical. She did great and acted like she was really having fun!

I completed my 11th radiation treatment today - halfway through! Went to work again after treatment and felt really good, a little stronger than yesterday. It's really amazing how each day I seem to have more energy, and the strength and range of motion in my arms gets better.
We got a call from the Neurooncologist this afternoon and Mayo has finished their final report - kind of. They're certain it's a cancer of the blood, or plasma to be more precise, but they're not sure exactly what kind - they think it's one of two. I'll need more tests to determine if there are any additional diseased sites in the body, but not sure when those will start. We meet with a new doctor tomorrow to find out some more information. So we know something, but not really sure what we know!

I had radiation treatment number 10 today - double digits! At the time of my treatment, there's still no word from Mayo on the pathology. After treatment I went to work for about 6 hours. It was a good day, really good to see everyone and start getting back in a routine. I got a call from my "new" chiropractor, the one person that showed enough concern to advise me to go to the E.R. He was just checking on me and shared that he was talking at a conference of young chiropractic doctors and shared my story. He reviewed the visit and tests he'd performed, and told them he'd refused to treat me in any way and recommended the ER. I got the impression that most in the room were amazed that he wouldn't try some kind of treatment, until he told them of the diagnosis and the damage that could've been done with any additional treatment. He said my case was going to be a great learning tool for these young doctors. Wow! I'm constantly amazed at all the good things that are coming out of this, it's really overwhelming.
Tida got a call from my Radiation Oncologist while I was at work. One of the things I didn't share earlier was that we'd received a call last Friday with a preliminary finding on the pathology. They thought it might be one of two, both fairly rare, types of cancer. I decided not to share that because it was preliminary and they weren't willing to sign off on it yet, so I didn't even want to spend any time or emotion if they weren't certain. The call today was to tell us Mayo had backed off the preliminary report and now has no idea what it is. Testing will continue. That's okay, I'm still getting stronger daily. We'll be patient and let them do what they do.

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.