Tuesday, April 21, 2009

A week later ... ... ...

I think that if there is phase that best represents my last couple of weeks would be "Better Living Through Chemistry". I have been thinking that maybe I need a t-shirt.

It is really shocking to me when I think about the number of different pharmaceuticals I take in a week at different times. But while I am concerned about side effects and I do not like to normally take medication, these wonders of the modern era have allowed me to have somewhat of a normal life. It has taken me several weeks to find the right balance of medication and what and when to take meds dependent upon certain symptoms, but I am having a pretty good life. The one issue that does not seem to change is the fatigue. I am so easily tired. Sometimes I am able to carry out normal life activities and at other times it is really hard to get out of bed or a chair. It is not only physical fatigue that drags me down from time to time but the mental fatigue is the most frustrating. I really struggle with new information. I struggle when I meet new people and their names and faces, I make all sorts of little errors all day long, and I have problems doing everything from our bills and staying on top of the medical appointments. My absolute savior has been Em. No better example than this last Friday when I had my first appointment with the radiologist and I felt awful. I was so tired and out of it that I when we registered with the check in nurse she had to ask questions twice and even three times before I was able to respond. It was like I heard what she said buy my brain did not do anything. There is no way I could be doing as well that I am if it wasn't for Emma Lee. She has been the one to do all of my scheduling, transport me to the appointments, and has just been my wonderful support. She take care of my radiologist, home health nurse and supplies, oncologist, and on and on. So nice.

Like I mentioned, this last week Emma Lee and I met with the radiologist for the first time in the Tri-Cities. Just having that meeting reminded me that I am certainly not through the woods by any means yet and just the seriousness of cancer. There are so many consequences of cancer treatment. I have just begun to accept the realities that chemotherapy has meant for me for the rest of my life and now I am trying to grip the realities that radiation therapy to my thoracic cavity will mean. Unfortunately, my radiation field will include portions of my heart, lungs, and esophagus and will certainly cause me some issues immediately and potentially quite serious in the future. Too much to think about, I wish I could just get away sometimes.

I was so happy this weekend. I was able to accomplish a Herculean feat. It took me all weekend, multiple attempts but I did it. I mowed my lawn. It is funny what sort of things that I consider accomplishments but it felt so good to be able to do it myself. Now the only problem is the grass clippings in the back of my pick-up; but one thing at a time please. It also was so nice to be outside. I must have been quite the sight though. To protect my skin from the sun I was wearing a long sleeved shirt, long pants, a big Aussie type hat, and a medical mask over my mouth and nose. I looked like I was working toxic waste sight and not my beautifu lawn.

Oh yeah. We had a guests. Diane and Eric Harp and two of their kids stopped by our place on last Friday night on their way to visit reletives. It was really nice to see them and catch up a little. I am so amazed how big their boys are getting. I remember when Diane had Taylor and tha just does not seem like that long ago. Those were great times in the old Heritage High planning room. I think about those years a lot. Steve and Lori; Jim, Russ, and Diane; Carol, Mat, and Eric; Jennifer, Kathy, and Tim. What a crew and wonderful times and memories. Oh yeah and thanks Steve for that big chocolate bar you gave to me my first year of teaching. I do not remember why you gave it to me but I for some reason remember you giving me a great big Hershey Bar.

Well, good freinds I think I am going to bring this entry to a close. Thank you former Heritage teachers now at Union for the letters and good will wishes. Lisa I was so excited when I got your envelop and read your words. Dave your letter was classic. To the Hermiston community who has so opened their arms to me and my family I want to say;

thank you so much.

Monday, April 13, 2009


I am so sorry for keeping you all in the dark for so long but the last seven days have been really rough on me and have not felt able to blog. As you all may remember from my last entry I was going to Portland to have a pic line put in my arm to help battle the vasiculitis in my veins. Well that proved to be more than a walk in the park.

So here is the story:

On Friday the 3rd, after attempting to teach for the day Em and I headed to Portland to find out what was wrong with my arm. The doctors were worried that I might have had a blood clot and that could have led to a stroke. To make matters a little more serious, I have been having a lot of trouble with my blood pressure. Every time I have gone to the doctors in since discovering the tumors my blood pressure has been elevated and it has not been brought under control with medication. The doc's had already tried a regiment of steroids to address the arm problems and all that they did was to make me really sick. The trip down on Friday was quite nerve racking. I was very motion sick, my arm burned like it had been dipped in acid, and I was exhausted from not sleeping in several days. Once we got to Portland I was quickly admitted to see the doc and he had a couple tricks that seemed to help. The best thing that he did for me was a treatment of IV morphine. For the first time in days I was able to rest without pain and I slept. As for what happened after that I am not sure. It is a good thing that Em was with me because I was out of it. But the ride home was tough because at about The Dalles the Morphine wore off and my only option was some new pain medication that the doctor sent me home with. It wasn't nearly as effective.

I then had Saturday and Sunday to try to feel better but I was wiped out. The new pain medication put me in an awful state. At one point I think I may have gotten over medicated and my body was just going in and out of control. Between the pain killers, steroids, anti naussia medication, high blood pressure,and anti agitation meds I was sick. Sadly Saturday was RyLee's 4th Birthday Party and I was in bed for the whole time. I could not even get up long enough to be there for the singing of Happy Birthday. I have never felt so wiped out. I spent Sunday looking at pictures of the party and hearing about the adventures that RyLee had with her girl friends. It sounded wonderful! Princesses, dresses, jewelry, dancing, cupcakes, crafts, and lots of little girl giggles. I really am sad that I missed it. Emma Lee did an amazing job planning and putting on RyLee's BDay party. Especially while balancing my needs, work, Katelyn, and just everyday household stuff. AMAZING. I want to hire a maid to help Emma Lee out but what she really needs is a good vacation.

That brings us to Sunday night. My brother Joe and his wife Kelsey who live in Salem opened their house up to us to spend the night. So Em and I loaded up in our Toyota Highlander once again and took off for Salem. I was very very ill. I think we stopped 20 times between Pendleton and Salem. Every corner, curve, and bump in the road became my nemesis. It was nice to see both of them but I just sat in the arm chair mostly and went to bed. I was really appreciative that they had dinner made for us. Even though I did not feel like eating the food looked so good I sat down and ate a little. Then Monday morning we proceeded to the hospital to have my pic line put in. It went okay. The IV nurse had a little trouble getting it in the right place because of all of the problems in my chest with the thoracic surgery that I had in February, the location of the tumors, and the sensitivity I have been having. There was a point where I felt like a hair dryer was blowing on me and I had a lot of trouble breathing. The nurse had to back out the line and position it a little different way and then I was ok. I took almost four hours to place the pic line. By the time we got out of the hospital I was so tired and once again so drugged up that I felt like crap. We then started the long trip home.

I went to work on Tuesday. That was enough.

Then on Wednesday the day started okay but after teaching a couple of period I had a episode where I could not breath very well. It did not last very long but it required me to go to the Hospital in Walla Walla to see what was going on. The problem turned out to be that the pic line had moved on me in my chest and caused a reaction. But other than that episode the pic line seemed to be okay so Emma and I quickly headed back to Pendleton because Wednesday was RyLee's birthday and the family was coming over for presents and cake and ice cream to celebrate the actual day. I was so happy that I was able to be there for that. I was tired but I hide it as much as possible because I wanted RyLee's day to be about her and not my illness.

On Thursday I had to do something that I havn't had to do in years. One of the things that I have given up to conserve my energy and because many of my meds will not allow me to do is dive. So I called my father and asked him if he could come to my school and give me a ride home. It probably has been 15 years since I called my dad from school and asked for a ride home. I had to get home because RyLee's recital was that night at the Pendleton Convention Center. The plan was that I would watch Katelyn and we would be picked up later by Emma Lee's mom who would drive us to the recital. This made it easier but the recital was really long and the ballet group was the last to perform. RyLee was so beautiful and her performance was really well done.

Which brings us to Friday a chemo day. Well in order to get my chemo treatment my brother-in- law and father-in-law worked out a plan where my Brother-in-law would drive my father-in-law's new pickup down and back to Portland in one day to give Emma Lee and I a little break. It was so nice that Colin was able to do that. The day was long because it was my first treatment using the pic line and because of the problems that I had with the pic line my doctor wanted us to stay in the Portland area for a while to make sure that their would be no problem before we hit the road home to Pendleton. But all went okay. Was tired and more nauseated than I ever had been but okay.

Then it hit. This last weekend I have been so wiped out and nauseated. Easter Weekend :( I was able to get myself together enough to take my family to Easter Brunch at Wildhorse. The kids loved it. They got to eat all sorts of fun food and even had choclate covered rice crispy treats from a chocolate fountain. It was a lot of fun. After we got home I helped Emma get the kids down for naps and then I worked on resting too.

Now it is Monday and after having a real rough night I am at work. I have just taken a couple minutes to take the time to post this blog that I wrote mostly last night. I hope you are all are doing well. sorry for all of the errors and typos but not much time to proof read.

Wednesday, April 8, 2009

sorry for not posting

I am so sorry for not posting for some time but the last seven days have been real tough. Last Friday I arrived at school planning on teaching a whole day but my arm left arm had really been hurting me. I thought I would just take my heating pack and try to keep heat on it for the day because that seemed to help Thursday evening. But after just a couple of hours one of my coworkers noticed that I did not look well and looked at my arm and said that I needed to go home and call my doctor. Well, I did relent on the seond issue and called my oncologist who was very concerned that I was experiencing so much pain after they had prescribed me the steriod which should have cleared this up. So he wanted me in Portland right away because he though I might have a blood clot in my arm, not good! Needless to say Emma Lee and I quickly made our way to Portland where test concluded that I did not have a blood clot but the vein in my arm where the chemo was administered was greatly "distressed". They put me on a whole host of new drugs and scheduled me to come back to Portland on the following Monday to have a pic line put in

I will continue later. I need to go to bed. I am soo tired


Wednesday, April 1, 2009

A short update

Many of you are probably wondering if I was sent to the ER Saturday night and I am happy to announce that I got to sleep (well sort of sleep) in my own bed. While I have been having tremendous pain in my left arm and hand as a result of the chemo treatments we have been able so far to keep the problem from getting too much worse. The doc. put me on a strong steroid to try to battle the swelling and pain in my arm and he also heard that I have always wanted to be more like my favorite Caliefornia govenurh (note the spelling, its phonetic) and thought this might help "pump me up". So if you happen to see me around, notice how sculpted I am beginning to look. I do believe that I am starting to become quite the image of Greek mythological stature since I have been receiving steroids since my fabulous stay in the luxurious Providence Portland Medical Center and have been receiving my regular injections since starting chemo, and now I have my own personal prescription I get to take twice a day. I have inquired about receiving a little professional advice from people like Barry Bonds and Floyd Landis on what might be the best way to balance and conceal my steroid usage but they seemed not too interested in making any sort of comment on the issue.

I do have sympathy for all of the people around me for the next few days though because the side effects of my newest pharmaceutical wonder are "increased agitation, moodiness, and sleeplessness". Sounds like a lot of fun huh!?! What is going to be even more fun is that I am going to have a mid-line put in in the next couple of days since I am having so much trouble with my veins. I am not looking forward to that but it is what it is.

It has been really hard continuing to go to work. Although I do believe that I is good for me to get off my bum and contribute to society it really takes a toll on my body. I hurt everywhere. My brain is like oatmeal. My mouth feels like the taste buds have been replaced with strips of aluminum, and various other metal alloys. My lips are cracked and along with my mouth burn most of the time. Then there is my digestinal tract, you do not want to know about that!

Well chin up, Demianew! Press forward and tomorrow will be better.