I had a fantastic day. I went to Bethesda for my daily date with the Radiation machine, but it was broken. Okay, so that is not so fantastic… and the fact that I have to come back Saturday for a treatment is not too fantastic either. But read on, will ya? I went in to see the Pulmonologist about the “spot” in my left lung. He took a bunch of history and checked me out. He didn’t see anything that would indicate a problem with my lungs. So, he brought up the CT images and the first time he went through them he didn’t really see anything. He went back and looked at the radiologist’s report and noted the specific image number. He went to that image and we could barely see the cloudiness that was noted. The doctor’s exact words were, “I’m not impressed.” The area that is in question is right next to my heart. He noted some artifacts, or blurriness in the image due to the beating of my heart. He thinks that the cloud is just blurriness – another doctor agreed with him. Based on my overall good health they decided that this was nothing to worry about at all. He said that a follow-up CT would not be necessary. How cool is that?!? I was pretty sure it was nothing, but we had to go through this just to be sure.
After that happiness, I decided to go to Dr. Rosenbaum’s office to see if I could get some information about my left leg since I never heard back from them. I was talking to his assistant and he came barging into the room! It sure was good to see him again. He told me that he talked to an orthopedist and they said it was nothing to worry about either. Man, can I get a Hallelujah?!? It looks like weird growths like that are common. I’m going to follow up with Dr. Rosenbaum to get that in writing so that it is documented, but how fantastic is that? I had a long day at the hospital, but it sure was worth it. All I have left now is an appt with the Urologist next Tue. Pray for that to go well, will ya? Please??
I had a heck of a time getting to sleep last night after I blogged. I layed in bed until almost 4am before I finally dozed off. Then I had to wake up at 9am to get going. So, I’m going to hit the sack right now as I have PT and RT (if the machine is fixed) tomorrow. I also need to get travel paperwork signed and faxed in so that I can get reimbursed for our lodging expenses. Check out last night’s blog if you haven’t already.
May 31, 2006
May 30, 2006
P-P-P-Pooped! :-P
Alright, so I have been stalling writing for about an hour now. I guess I just don’t have the motivation to write, even though there is so much to share with you. The theme lately seems to be fatigue. The weekend was full of rest and that gave me lots of energy. I stayed home most of the day on Saturday and did laundry and worked on some videos. One of which is a little one I did for my friend Rex. You’ve read about our dinners at Cassatt’s. Rex and his band play there once a month and I thought it would be fun to shoot and make a little video of their performance. I took some video with my little Canon SD550 and made a little something out of it. Not bad video for such a small camera, eh? We’re going to have dinner there again this Saturday, June 3rd. Let me know if you’d like to join us! Click here to watch it or watch it below.
Saturday night we joined up with some friends and had dinner at the Little Viet Garden on Wilson. The food was just okay (some of the dishes came out cold) but the service was terrible. I will never go there again. I am not even going to link to their website. Just don’t go there, ever. Overpriced, bad service and mediocre food... what else could you not want from a restaurant? Ick.
Sunday I videotaped our church service at Grace like I used to do each Sunday. I tape the service and it is broadcast on the local access cable channels in Arlington and Fairfax, VA. We borrow the equipment from Arlington Independent Media. Pastor John’s sister, Lynda, works there – so she edits the tape into a show that broadcasts three times a week. I had to stop by the studio last week just to make sure I still knew how to handle the equipment and to make sure I could carry it. The camera weighs about 20 pounds, but I just need to get it up on to the tripod and I’m good. I used to be able to carry most of the equipment with one hand, but now I need two. It’s okay though – I’ll get all my strength back. It was good to see some familiar faces there too – and some avid blog readers. Hello to Jackie, Jon, Brian, Austin and Jen. You guys Rock and do Arlington a great service!
Monday was sleep-in day for us. We woke up a little before noon and headed out to grab a nutritious and delicious lunch (well, delicious, at least) at Chick-Fil-A at Ballston Mall. Man, I love their nuggets with honey. We then set out to find some local geocaches near our home. What is a geocache, you ask? Here’s a quote from their website:
We finished off the day with a cool drink and some tapas at one of our favorite restaurants, La Tasca. They have great food at a reasonable price. Check it out if you have the chance. Here’s the best part about Monday, I may or may not have driven around town a little bit. It was or was not pretty easy. That’s all I’ll say about something that may or may not have happened.
Oh yeah, I made Holly shave off all my hair, so this is how I look now:
The hair falling has slowed down tremendously. There are a few on the pillow in the morning, but not as many as there were last week. The tingling has pretty much stopped and I’m feeling pretty normal again up there. Today at physical therapy, Jess had me run for the first time in months. I ran for about seven minutes at a rather slow pace just to check out my leg. My right leg doesn’t advance forward for the next step as fast as the left leg does. It makes for an akward staggered run and my foot also falls flat, not heel first. My left shin started to tighten up so we stopped, but it was an interesting first step. We’re going to work on speeding up my motor function in the right leg more and more.
I went to radiation after that. Tomorrow is my 20th treatment ending the fourth week. I have 33 treatments total (not 30 like I previously though) so these will last through mid June. Today, after therapy, I was ready to crash once again. I kept falling asleep on the metro and once had to see exactly where I was on the orange line as I thought I was out for a while, but I must have just dozed off for a minute. I got home and slept for three hours. I hate feeling like this, but the doctor keeps telling me that this is normal for brain radiation patients. I see the pulmonologist about the fuzzy spot they found in my lung before the surgery. I’m sure it is nothing. I’ll let you know tomorrow. Okay – I have babbled on enough. More tomorrow.
Saturday night we joined up with some friends and had dinner at the Little Viet Garden on Wilson. The food was just okay (some of the dishes came out cold) but the service was terrible. I will never go there again. I am not even going to link to their website. Just don’t go there, ever. Overpriced, bad service and mediocre food... what else could you not want from a restaurant? Ick.
Sunday I videotaped our church service at Grace like I used to do each Sunday. I tape the service and it is broadcast on the local access cable channels in Arlington and Fairfax, VA. We borrow the equipment from Arlington Independent Media. Pastor John’s sister, Lynda, works there – so she edits the tape into a show that broadcasts three times a week. I had to stop by the studio last week just to make sure I still knew how to handle the equipment and to make sure I could carry it. The camera weighs about 20 pounds, but I just need to get it up on to the tripod and I’m good. I used to be able to carry most of the equipment with one hand, but now I need two. It’s okay though – I’ll get all my strength back. It was good to see some familiar faces there too – and some avid blog readers. Hello to Jackie, Jon, Brian, Austin and Jen. You guys Rock and do Arlington a great service!
Monday was sleep-in day for us. We woke up a little before noon and headed out to grab a nutritious and delicious lunch (well, delicious, at least) at Chick-Fil-A at Ballston Mall. Man, I love their nuggets with honey. We then set out to find some local geocaches near our home. What is a geocache, you ask? Here’s a quote from their website:
“Geocaching is an entertaining adventure game for GPS users. Participating in a cache hunt is a good way to take advantage of the wonderful features and capability of a GPS unit. The basic idea is to have individuals and organizations set up caches all over the world and share the locations of these caches on the internet. GPS users can then use the location coordinates to find the caches. Once found, a cache may provide the visitor with a wide variety of rewards. All the visitor is asked to do is if they get something they should try to leave something for the cache.”Read more about geocaching at their website. I like to think of it as a casual sport. We set out to find six but only found three. One was a difficult one near home, another was down the street and the third was in a shopping center. We came up empty at those three, but I think the one at the shopping center was missing as I discovered we were at the right place. The last three were a lot of fun – we found them and got to explore some new places we had never been to in the area. The best was Glencarlyn Park – there were tons of trails and shade. When I can get on the bike again, we’re going to head out there for a ride. Anyway, we had a lot of fun in the sun even though it was very hot. I think it hit 90 degrees Monday, but we were ready for it.
We finished off the day with a cool drink and some tapas at one of our favorite restaurants, La Tasca. They have great food at a reasonable price. Check it out if you have the chance. Here’s the best part about Monday, I may or may not have driven around town a little bit. It was or was not pretty easy. That’s all I’ll say about something that may or may not have happened.
Oh yeah, I made Holly shave off all my hair, so this is how I look now:
The hair falling has slowed down tremendously. There are a few on the pillow in the morning, but not as many as there were last week. The tingling has pretty much stopped and I’m feeling pretty normal again up there. Today at physical therapy, Jess had me run for the first time in months. I ran for about seven minutes at a rather slow pace just to check out my leg. My right leg doesn’t advance forward for the next step as fast as the left leg does. It makes for an akward staggered run and my foot also falls flat, not heel first. My left shin started to tighten up so we stopped, but it was an interesting first step. We’re going to work on speeding up my motor function in the right leg more and more.
I went to radiation after that. Tomorrow is my 20th treatment ending the fourth week. I have 33 treatments total (not 30 like I previously though) so these will last through mid June. Today, after therapy, I was ready to crash once again. I kept falling asleep on the metro and once had to see exactly where I was on the orange line as I thought I was out for a while, but I must have just dozed off for a minute. I got home and slept for three hours. I hate feeling like this, but the doctor keeps telling me that this is normal for brain radiation patients. I see the pulmonologist about the fuzzy spot they found in my lung before the surgery. I’m sure it is nothing. I’ll let you know tomorrow. Okay – I have babbled on enough. More tomorrow.
May 28, 2006
P-P-P-Pressure
I don’t know if this is true or not, but I think it’s harder for caregivers in a traumatic situation than the person who went through the event. I haven’t done any research on it yet, but you know I will be this week. I think caregivers are under tremendous pressure to always be responsible. And it’s hard to be the responsible one all the time.
When Roger first came home, I had a hard time being patient with him. Thank goodness it only lasted a short while, because it was hard. I had to pray a lot (and ask for a lot of prayer) and by the grace of the Lord, he gave me a new understanding and patience for Roger. Now I’m struggling with an intense pressure to be responsible at all times.
I guess the hard part is not being responsible, it’s the guilt and selfishness inflicted on the caregiver by the caregiver themselves when they are not responsible. If you decide to do something for yourself, if the person in need doesn’t put the feelings of guilt on you, you put them on yourself when your plans don’t go as planned because of the needs of the person you are caring for. You feel guilty and/or selfish for trying to do something for yourself instead of the person you are caring for. Or if things don't go as planned, you feel bad for not being more respoonsible. All this in turn creates exhaustion because you just can’t keep going like that.
After waking up at 7:45 a.m. on a Sunday morning to help Roger load the video equipment in the truck, drop it and Roger off at church and run two miles, I decided I needed to be irresponsible for a few hours. I cooled down a little longer than usual after my run. I sat and checked my email instead of rushing into the shower. I sat and did nothing while I drank Gatorade. I did move the sheets from the washer to the dryer, but I got in the shower really late after I called a friend and bailed on something I said I’d do at church. And now I’m sitting here venting on this blog instead of drying my hair and getting dressed. I’m obviously going to be late for church, but I’m not concerned about what I’m missing. (I could care a less about the Da Vinci Code.) Who knows, maybe I’ll be irresponsible the rest of the day. Okay, after we take the video equipment back to the studio. I am so glad we have tomorrow off for Memorial Day. I need it.
I know this too will pass, but it’s hard sometimes while you’re going through it. I just wanted you all to know that although many of you think we are so strong, we do have our moments of weakness. We are only getting through this because we are being carried by our Lord and through the love and prayers of you.
The LORD is my shepherd; I have everything I need.
He lets me rest in green meadows; he leads me beside peaceful streams.
He renews my strength. He guides me along right paths, bringing honor to his name.
Even when I walk through the dark valley of death, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me.
You prepare a feast for me in the presence of my enemies. You welcome me as a guest, anointing my head with oil. My cup overflows with blessings.
Surely your goodness and unfailing love will pursue me all the days of my life, and I will live in the house of the LORD forever.
Psalm 23 (NLT)
When Roger first came home, I had a hard time being patient with him. Thank goodness it only lasted a short while, because it was hard. I had to pray a lot (and ask for a lot of prayer) and by the grace of the Lord, he gave me a new understanding and patience for Roger. Now I’m struggling with an intense pressure to be responsible at all times.
I guess the hard part is not being responsible, it’s the guilt and selfishness inflicted on the caregiver by the caregiver themselves when they are not responsible. If you decide to do something for yourself, if the person in need doesn’t put the feelings of guilt on you, you put them on yourself when your plans don’t go as planned because of the needs of the person you are caring for. You feel guilty and/or selfish for trying to do something for yourself instead of the person you are caring for. Or if things don't go as planned, you feel bad for not being more respoonsible. All this in turn creates exhaustion because you just can’t keep going like that.
After waking up at 7:45 a.m. on a Sunday morning to help Roger load the video equipment in the truck, drop it and Roger off at church and run two miles, I decided I needed to be irresponsible for a few hours. I cooled down a little longer than usual after my run. I sat and checked my email instead of rushing into the shower. I sat and did nothing while I drank Gatorade. I did move the sheets from the washer to the dryer, but I got in the shower really late after I called a friend and bailed on something I said I’d do at church. And now I’m sitting here venting on this blog instead of drying my hair and getting dressed. I’m obviously going to be late for church, but I’m not concerned about what I’m missing. (I could care a less about the Da Vinci Code.) Who knows, maybe I’ll be irresponsible the rest of the day. Okay, after we take the video equipment back to the studio. I am so glad we have tomorrow off for Memorial Day. I need it.
I know this too will pass, but it’s hard sometimes while you’re going through it. I just wanted you all to know that although many of you think we are so strong, we do have our moments of weakness. We are only getting through this because we are being carried by our Lord and through the love and prayers of you.
The LORD is my shepherd; I have everything I need.
He lets me rest in green meadows; he leads me beside peaceful streams.
He renews my strength. He guides me along right paths, bringing honor to his name.
Even when I walk through the dark valley of death, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me.
You prepare a feast for me in the presence of my enemies. You welcome me as a guest, anointing my head with oil. My cup overflows with blessings.
Surely your goodness and unfailing love will pursue me all the days of my life, and I will live in the house of the LORD forever.
Psalm 23 (NLT)
May 23, 2006
New Hats
Well, Roger decided to get a new hat. Since he only owns baseball caps, he doesn't have a nice hat in the event he is dressed a little nicer and still needs to protect his head. So we did some research online to figure out what kind of hat he wanted. He couldn't make up his mind so I made it up for him. We looked online and around town and compared prices. He bought two skully caps to sleep in so he doesn't get hair all over the place. He thinks he's a brother now. He said he wanted to look like Vince Young. Then we found some Kangol ivy caps at a kiosk at the PX for $18. Way cheaper than a store or online. So Roger checked them out when we were there on Sunday, but he didn't try one on. He's very cautious about trying on hats because he doesn't want to put hair all over some one's products.
He thought about it some more and today after work we went to the PX so he could try one on and buy if he liked it. They were out of tan which is the color he would have preferred. So he settled on a gray one, after I made him try on baby blue and navy. He wouldn't even get close to the pink one. The boy just won't experiment. He bought it and while I was waiting I tried on a hat. I turned to show Roger and he loved it. So I got a new hat too. It's so cute and perfect for days when I'm too cute, uh, I mean, dressed up for a baseball cap. So here we are in our new hats from the balcony of our 12th floor apartment. Aren't we just the cutest. I think so too. See more pics at the Flickr link to the right.
He thought about it some more and today after work we went to the PX so he could try one on and buy if he liked it. They were out of tan which is the color he would have preferred. So he settled on a gray one, after I made him try on baby blue and navy. He wouldn't even get close to the pink one. The boy just won't experiment. He bought it and while I was waiting I tried on a hat. I turned to show Roger and he loved it. So I got a new hat too. It's so cute and perfect for days when I'm too cute, uh, I mean, dressed up for a baseball cap. So here we are in our new hats from the balcony of our 12th floor apartment. Aren't we just the cutest. I think so too. See more pics at the Flickr link to the right.
May 20, 2006
The Results
Okay, don’t scroll down and look at the picture yet. Read the explanation first.
Last night after we helped move a couch to the community house for the Brazil Mission Trip garage sale and helped Laura and Amanda price garage sale items, we got home pretty late, after midnight. Roger really wanted me to cut his hair and realized we were not going to have a chance any other time this weekend. So he asked me if I’d do it then. He set everything up and I proceeded to cut his hair.
I started with the #2 guard and just cut the top. It didn’t take all the hair out. It just cut what it was supposed to cut. We were surprised and relieved. He looked at it in the mirror for a while debating with himself out loud whether we should just go further. He decided to just go all the way. So then we used the #1 guard all the way out on top. It was short. I used no guard all the way out on the sides and the #1 all the way in to fade the top. It was short but looked fine.
Then he took a shower and washed his head to get all the hair off his body. He opened the shower curtain and lightly patted his head with the towel to dry it. I looked up when he pulled the towel away and saw that a lot of hair had come out. I could see an outline of a square on his head more on the right side. I told him and he looked in the mirror using the medicine cabinet mirror to be able to see it. Yep, there was a lot more gone. Oh well we said. I put the ointment on his head that ONC gave him for the itching. It was thick and oily. I got it everywhere he said it itched.
We woke up this morning and there was hair on his pillow like every morning this week. But they wouldn’t come off because of the ointment. Then he saw that there were loose hairs all over his head. So he decided to rinse his head to get them off because they were stuck on his head because of the ointment. That didn’t work. So he decided to wash his head. Maybe the shampoo would take the ointment off and the hairs would fall off. Just more loose hairs. So he washed it again this time better and with more lather. He patted his hair dry and I was like, WOAH! A lot of hair came out. The square was even more visible.
At first I thought he was going to freak out. But he didn’t. He has decided now that he wants to watch it this week and if more hair comes out he wants to shave his whole head with the #1 guard all the way out. Fine with me. What ever makes him comfortable. This will be the only time he’ll have an excuse to shave his head.
Okay, you can look at the picture now.
Last night after we helped move a couch to the community house for the Brazil Mission Trip garage sale and helped Laura and Amanda price garage sale items, we got home pretty late, after midnight. Roger really wanted me to cut his hair and realized we were not going to have a chance any other time this weekend. So he asked me if I’d do it then. He set everything up and I proceeded to cut his hair.
I started with the #2 guard and just cut the top. It didn’t take all the hair out. It just cut what it was supposed to cut. We were surprised and relieved. He looked at it in the mirror for a while debating with himself out loud whether we should just go further. He decided to just go all the way. So then we used the #1 guard all the way out on top. It was short. I used no guard all the way out on the sides and the #1 all the way in to fade the top. It was short but looked fine.
Then he took a shower and washed his head to get all the hair off his body. He opened the shower curtain and lightly patted his head with the towel to dry it. I looked up when he pulled the towel away and saw that a lot of hair had come out. I could see an outline of a square on his head more on the right side. I told him and he looked in the mirror using the medicine cabinet mirror to be able to see it. Yep, there was a lot more gone. Oh well we said. I put the ointment on his head that ONC gave him for the itching. It was thick and oily. I got it everywhere he said it itched.
We woke up this morning and there was hair on his pillow like every morning this week. But they wouldn’t come off because of the ointment. Then he saw that there were loose hairs all over his head. So he decided to rinse his head to get them off because they were stuck on his head because of the ointment. That didn’t work. So he decided to wash his head. Maybe the shampoo would take the ointment off and the hairs would fall off. Just more loose hairs. So he washed it again this time better and with more lather. He patted his hair dry and I was like, WOAH! A lot of hair came out. The square was even more visible.
At first I thought he was going to freak out. But he didn’t. He has decided now that he wants to watch it this week and if more hair comes out he wants to shave his whole head with the #1 guard all the way out. Fine with me. What ever makes him comfortable. This will be the only time he’ll have an excuse to shave his head.
Okay, you can look at the picture now.
May 19, 2006
Return to NRH
The hair is falling out in droves now. Holly bought me some more gentle shampoo, but I'm not sure it's going to help. I'm just going to need to go with the flow. Sometimes I just want to make it all fall out now to avoid having to watch where it goes during the day. Or maybe I should leave it alone and be gentle with it and maybe the ones left will stay put and keep growing -- or will they? Maybe all the follicles that are affected are going to lose their hairs eventually anyway so it won't matter. I don't know. I was pretty pooped today and didn't go to work. And at times, when I am laying or sitting with my left leg extended, I feel like there's something going on with my leg. I think that I might be having very small mild seizures in my leg due to the radiation, but I have no idea. The doctor told me to be careful and keep an eye on it. I don't think its a big deal and I also think it might just be my mind messing with me. I'll keep you posted. Holly left a post yesterday about the hair loss. Click here for a more detailed shot with notes.
As I said a few days ago, I made a return visit to NRH to thank all the staff for their hard work getting me back to where I am. A lot of these pictures are actually from my visit a month ago, but the stories of each person still hold true. You can click each picture for a larger version, or click here to go to the photo set in Flickr.
Kate (left) was my Physical Therapist. She concentrated on my leg and getting me to walk again. When I got to NRH, I was only able to barely lift my leg. By the time I left, Kate had me walking with a cane. She was absolutely awesome. She was very observant and was able to tailor my therapy on the fly. Some days, we would try something and it wouldn't work like she thought it would. I could tell she was in deep thought and immediately she would say, "let’s try this instead." We would try the alternative and everything would flow better. She was just amazing, thoughtful and caring and I credit her with getting me back on my feet.
Missy (right) was my Occupational Therapist. She worked to get my arm and hand working again. Missy was great at giving me a hard time – and I needed it! My fingers were moving a little bit when I got to NRH and Missy worked with me everyday to get my whole arm down to my fingers working very well! We did range of motion exercises, stretching and when I got enough movement back we worked on improving my hand and finger motor skills. She did a great job of making sure that I was setup at home to be able to function – getting in and out of the tub; using the restroom; working in the kitchen; doing domestic tasks; stuff like that. She was instrumental in making me confident that I could function at home like I did before the surgery. And no, she's not taller than me, I'm standing and she's standing on a table.
Carol (left) was my case manager. She took care of all my insurance and paperwork requirements. She quickly worked to resolve issues that arose with insurance and was genuinely interested in the progress of her patients. It was nice to know that she was looking out for my interests – it was a burden off of my back. I also enjoyed talking with her about her family, food, television or whatever subject came up when I saw her.
When I stopped by to visit, I had a chance to talk with Kate, Carol and Alison (right.) On the days that Kate was out, Alison stepped in to treat me. She was great at stepping in where Kate left off. She always provided positive reinforcement and pushed me to try new things.
Dr. Milani (left) was my doctor during my stay. She was one of the first people I would see in the morning. She checked in on me everyday to see how I was doing and to make sure I was healthy and recovering well. She was very thorough and cautious – making sure to rule out anything that may be an issue when a problem was presented to her. Once, I was pretty sure that I pulled a muscle in my leg. I told her and she sent me off for an ultrasound just to make sure that a clot hadn’t formed. There was no clot, but it goes to show that her diligence assures that her patients are safe.
Kristen (right) was my Speech Therapist. Speech Therapy encompassed not only speaking, but the cognitive aspect of my recovery. She was so patient with me when I first got to NRH. She had to perform some tests and I scored very poorly. I was disappointed and wondered if I was going to be slow forever. She assured me that I needed to be patient and let time and rest work their magic. The tests seemed to go for days and I was getting very frustrated. But after the first week, after I had caught up on my sleep, I was doing much better in our sessions. In fact, by the end of the second week, I was doing so much better that she was considering stopping our sessions. I think I was insistent that we continue so that I could work my brain. She gave me some of the most complex tasks that I had and I breezed through them. I also helped lead some other cognitive group sessions. It was nice to have someone like her understand what I was going through and assure me that I was back to normal. She was awesome!
Here are some of my favorite nurse techs (left.) They were very friendly and did their best to make sure we were taken care of and comfortable.
I was admitted to the Brain Injury & Stroke Recovery Program ward (right.) This is the nurses’ station. I’m talking to one of the other speech therapists – I can’t remember her name! Help, anyone?
Here’s my buddy Matt (left.) He’s 19 and was involved in a construction accident to his right head and brain while working near GWU. Matt is a great guy! He has great spirit and faith. I’m trying to get in touch with him so that I can keep up with his progress. I made sure to stop by to say hello during my visit. It sure was good to see him again – and his progress is astounding! He called me yesterday and he tells me he is walking with a cane. He said that his "wheelchair is collecting dust in the corner." That is awesome! I can't wait to see Matt in person again.
Lynette (right) was my favorite nurse. She was very understanding and caring of all her patients. We often talked about her son and family. We laughed a lot and I grew to respect her quickly. She always took good care of me when she was on duty.
Godwin (left) was another very good nurse. He was always laughing and smiling. He was also very professional and took great care of his patients. I was happy to have him when Lynette was off.
Max (right) was another of my Occupational Therapists. A few times a week I would go down to the second floor for upper extremity group. We would play games like Connect Four, screw nuts on to bolts, pick beads out of a bowl of rice and manipulate items located high too build arm strength. Max was aggressive with me near the end of my stay and he would delightfully challenge me more and more. My favorite thing to do was to stand in front of a soft table and toss a ten pound medicine ball back and forth. We would toss it high, low, far left and right to help strengthen my right arm and my leg. It was fun and I thank him for listening to me ask for more!!
Lindsey and Neepa (left) are also Occupational Therapists. Lindsey also worked with me in upper extremity group. She always found things for me to do that would challenge me based on my new found strength. I never worked directly with Neepa, but she always had a smile on her face and her laugh was contagious. One day I overheard her talking about the fact that she just had her hair done. I made a point to tell her that it looked nice and she greatly appreciated the compliment. I then made it a point to tell her how fabulous her hair looked whenever I saw her. She told me to never stop telling her that, so I didn’t. See? I’m saying it again in this picture... "Neepa – your hair looks fabulous!"
There are so many other people that deserve to be mentioned, but these folks here are the ones I worked with and saw the most. I know that most jobs can be thankless, I just want these folks to know that the jobs they do are making people's lives, like mine, better. Thank you again for everything you do and did for me. I will never forget you.
As I said a few days ago, I made a return visit to NRH to thank all the staff for their hard work getting me back to where I am. A lot of these pictures are actually from my visit a month ago, but the stories of each person still hold true. You can click each picture for a larger version, or click here to go to the photo set in Flickr.
Kate (left) was my Physical Therapist. She concentrated on my leg and getting me to walk again. When I got to NRH, I was only able to barely lift my leg. By the time I left, Kate had me walking with a cane. She was absolutely awesome. She was very observant and was able to tailor my therapy on the fly. Some days, we would try something and it wouldn't work like she thought it would. I could tell she was in deep thought and immediately she would say, "let’s try this instead." We would try the alternative and everything would flow better. She was just amazing, thoughtful and caring and I credit her with getting me back on my feet.Missy (right) was my Occupational Therapist. She worked to get my arm and hand working again. Missy was great at giving me a hard time – and I needed it! My fingers were moving a little bit when I got to NRH and Missy worked with me everyday to get my whole arm down to my fingers working very well! We did range of motion exercises, stretching and when I got enough movement back we worked on improving my hand and finger motor skills. She did a great job of making sure that I was setup at home to be able to function – getting in and out of the tub; using the restroom; working in the kitchen; doing domestic tasks; stuff like that. She was instrumental in making me confident that I could function at home like I did before the surgery. And no, she's not taller than me, I'm standing and she's standing on a table.Carol (left) was my case manager. She took care of all my insurance and paperwork requirements. She quickly worked to resolve issues that arose with insurance and was genuinely interested in the progress of her patients. It was nice to know that she was looking out for my interests – it was a burden off of my back. I also enjoyed talking with her about her family, food, television or whatever subject came up when I saw her.When I stopped by to visit, I had a chance to talk with Kate, Carol and Alison (right.) On the days that Kate was out, Alison stepped in to treat me. She was great at stepping in where Kate left off. She always provided positive reinforcement and pushed me to try new things.Dr. Milani (left) was my doctor during my stay. She was one of the first people I would see in the morning. She checked in on me everyday to see how I was doing and to make sure I was healthy and recovering well. She was very thorough and cautious – making sure to rule out anything that may be an issue when a problem was presented to her. Once, I was pretty sure that I pulled a muscle in my leg. I told her and she sent me off for an ultrasound just to make sure that a clot hadn’t formed. There was no clot, but it goes to show that her diligence assures that her patients are safe.Kristen (right) was my Speech Therapist. Speech Therapy encompassed not only speaking, but the cognitive aspect of my recovery. She was so patient with me when I first got to NRH. She had to perform some tests and I scored very poorly. I was disappointed and wondered if I was going to be slow forever. She assured me that I needed to be patient and let time and rest work their magic. The tests seemed to go for days and I was getting very frustrated. But after the first week, after I had caught up on my sleep, I was doing much better in our sessions. In fact, by the end of the second week, I was doing so much better that she was considering stopping our sessions. I think I was insistent that we continue so that I could work my brain. She gave me some of the most complex tasks that I had and I breezed through them. I also helped lead some other cognitive group sessions. It was nice to have someone like her understand what I was going through and assure me that I was back to normal. She was awesome!Here are some of my favorite nurse techs (left.) They were very friendly and did their best to make sure we were taken care of and comfortable.I was admitted to the Brain Injury & Stroke Recovery Program ward (right.) This is the nurses’ station. I’m talking to one of the other speech therapists – I can’t remember her name! Help, anyone?Here’s my buddy Matt (left.) He’s 19 and was involved in a construction accident to his right head and brain while working near GWU. Matt is a great guy! He has great spirit and faith. I’m trying to get in touch with him so that I can keep up with his progress. I made sure to stop by to say hello during my visit. It sure was good to see him again – and his progress is astounding! He called me yesterday and he tells me he is walking with a cane. He said that his "wheelchair is collecting dust in the corner." That is awesome! I can't wait to see Matt in person again.Lynette (right) was my favorite nurse. She was very understanding and caring of all her patients. We often talked about her son and family. We laughed a lot and I grew to respect her quickly. She always took good care of me when she was on duty.Godwin (left) was another very good nurse. He was always laughing and smiling. He was also very professional and took great care of his patients. I was happy to have him when Lynette was off.Max (right) was another of my Occupational Therapists. A few times a week I would go down to the second floor for upper extremity group. We would play games like Connect Four, screw nuts on to bolts, pick beads out of a bowl of rice and manipulate items located high too build arm strength. Max was aggressive with me near the end of my stay and he would delightfully challenge me more and more. My favorite thing to do was to stand in front of a soft table and toss a ten pound medicine ball back and forth. We would toss it high, low, far left and right to help strengthen my right arm and my leg. It was fun and I thank him for listening to me ask for more!!Lindsey and Neepa (left) are also Occupational Therapists. Lindsey also worked with me in upper extremity group. She always found things for me to do that would challenge me based on my new found strength. I never worked directly with Neepa, but she always had a smile on her face and her laugh was contagious. One day I overheard her talking about the fact that she just had her hair done. I made a point to tell her that it looked nice and she greatly appreciated the compliment. I then made it a point to tell her how fabulous her hair looked whenever I saw her. She told me to never stop telling her that, so I didn’t. See? I’m saying it again in this picture... "Neepa – your hair looks fabulous!"There are so many other people that deserve to be mentioned, but these folks here are the ones I worked with and saw the most. I know that most jobs can be thankless, I just want these folks to know that the jobs they do are making people's lives, like mine, better. Thank you again for everything you do and did for me. I will never forget you.
May 18, 2006
It’s real now
I was emailing with a dear friend earlier today and thought what I typed I should share with you all. So Susan, this might sound familiar.
The radiation has become very real to me in a few short days. I went to Roger’s appointments with him on Monday. The first appointment for the day was radiation. He wanted to be there before 8:00 a.m. so we had enough time to get all the way over to NW DC to make it in time for his 9:30 a.m. follow-up appointment at NRH with Dr. Milani. He had asked previously if I could come back and watch the procedure and he asked me to take pictures and record it from the monitors outside since I would not be allowed to stay in the room. That was fine with me.
I tried very hard to stay out of the way, but that wasn’t easy in the entrance of the radiation room and the two staff coming in and out and turning the lights on and off. So I didn’t get a good picture of Roger on the table with his mask. As Roger got on top of the table and the technician placed the mask on his face and locked him in, my first thought was that he looked like a Mexican wrestler. His mask has the eyes cut out because it was pushing on his eyeballs and making the procedure uncomfortable. That was my first thought. Then it hit me.
I was filled with this rush of sadness. I don’t know why. I’m tearing up now writing about it. It was sad to think of what Roger was going through. I don’t know why being there made it so real for me. I mean, it is his third week of radiation. I guess actually seeing him lying there locked into the table by a face mask made it a lot more real. I feel like I’ve used that word way too many times. Seeing it gave it complete authenticity.
Then a couple days later Roger told me that he thought he was starting to lose hair. I didn’t see any hair loss and thought that maybe because he knew he would lose hair he had a heightened awareness to any hair loss. He said he saw hair on his paper and plate. I thought he was jumping the gun a little bit. Then the next morning he told me a lot of hair came out in the shower. I, of course, was already gone for work. That evening I was sitting next to him on the couch and he showed me his head. That’s when I saw it myself. The hair line along the front side of the incision had receded in one area a lot. (See picture to left.) It was really weird because I didn’t think he’d actually have hair loss or I didn’t know what to expect. Seeing that almost scared me. I felt like, this is for real. He asked me if there was thinning anywhere else. And I told him it was thin in the back. I was actually shocked at how much scalp I could see. It bothered me that night and the next day. I guess because it’s really for real now.
He wants me to cut his hair this weekend even shorter than I did last weekend. My first thought when he first asked me was as soon as I took the clippers over his head all the hair would come out. I didn’t think it would be good, but it’s what he wants. I don’t think shaving his head will make it all come out. But the hairs that are falling out don’t have a root at the end, so it makes me think they will come out very easy. I guess we’ll see this weekend.
Stay tuned for the results.
The radiation has become very real to me in a few short days. I went to Roger’s appointments with him on Monday. The first appointment for the day was radiation. He wanted to be there before 8:00 a.m. so we had enough time to get all the way over to NW DC to make it in time for his 9:30 a.m. follow-up appointment at NRH with Dr. Milani. He had asked previously if I could come back and watch the procedure and he asked me to take pictures and record it from the monitors outside since I would not be allowed to stay in the room. That was fine with me.
I tried very hard to stay out of the way, but that wasn’t easy in the entrance of the radiation room and the two staff coming in and out and turning the lights on and off. So I didn’t get a good picture of Roger on the table with his mask. As Roger got on top of the table and the technician placed the mask on his face and locked him in, my first thought was that he looked like a Mexican wrestler. His mask has the eyes cut out because it was pushing on his eyeballs and making the procedure uncomfortable. That was my first thought. Then it hit me.
I was filled with this rush of sadness. I don’t know why. I’m tearing up now writing about it. It was sad to think of what Roger was going through. I don’t know why being there made it so real for me. I mean, it is his third week of radiation. I guess actually seeing him lying there locked into the table by a face mask made it a lot more real. I feel like I’ve used that word way too many times. Seeing it gave it complete authenticity.
Then a couple days later Roger told me that he thought he was starting to lose hair. I didn’t see any hair loss and thought that maybe because he knew he would lose hair he had a heightened awareness to any hair loss. He said he saw hair on his paper and plate. I thought he was jumping the gun a little bit. Then the next morning he told me a lot of hair came out in the shower. I, of course, was already gone for work. That evening I was sitting next to him on the couch and he showed me his head. That’s when I saw it myself. The hair line along the front side of the incision had receded in one area a lot. (See picture to left.) It was really weird because I didn’t think he’d actually have hair loss or I didn’t know what to expect. Seeing that almost scared me. I felt like, this is for real. He asked me if there was thinning anywhere else. And I told him it was thin in the back. I was actually shocked at how much scalp I could see. It bothered me that night and the next day. I guess because it’s really for real now.He wants me to cut his hair this weekend even shorter than I did last weekend. My first thought when he first asked me was as soon as I took the clippers over his head all the hair would come out. I didn’t think it would be good, but it’s what he wants. I don’t think shaving his head will make it all come out. But the hairs that are falling out don’t have a root at the end, so it makes me think they will come out very easy. I guess we’ll see this weekend.
Stay tuned for the results.
May 17, 2006
Pissed Off Follicles
I think hot water pisses off my hair follicles. This morning, when I first got in the shower and washed my hair, not a lot was visibly coming loose. By the end of the shower, when I did a final rinse, I ran my fingers through my hair and there was tons coming loose! It was a little freaky! All day I was finding my hair on my shirt, the newspaper I was reading, my desk – everywhere. Tonight, my head has been tingling like crazy! It’s as if I can feel every hair follicle giving up the battle to hang onto its hair and letting go one by one. I’m afraid to see what my pillow is going to look like in the morning. But, it’s a minor issue. The doctors have lowered the radiation field to avoid exposing my scalp to too much radiation. But I think the first two weeks have taken their toll. Its okay though, its just hair. If it does not grow back, I’ll have a line and a circle on the top of my head. Kind of like the Greek symbol for Omega (F, right?) I had a good day at work. I’m starting to understand my new role and am trying to get some work done. It is nice to be productive and work with people again.
May 16, 2006
Tired
It has been another interesting day. I went off to PT at 0800. I had PT late yesterday so this morning’s workout was tough. I learned some new exercises that work on improving my motor coordination and speed. They involve jumping and lots of sweat – it was fun though. After that I headed over to NNMC for my radiation and visit with the doctor. They gave me some stuff to put on my scalp to try to reduce the itchiness. I had a nice lunch at the cafeteria and then decided to go up to the ICU to see if I could find the nurse that I remembered. She was a little Asian lady named Siri, but she would not cut be any slack – I remember that and I think she made me not want to give up.
I walked up to the ICU and into the area I remember. I asked if she was working and they said she was eating lunch right around the corner. I walked around the corner and I saw her sitting there. She immediately looked up, lowered her bowl from her face and her jaw dropped and then slowly smiled. It was an awkward reaction to me, but a pleasant one! She remembered me immediately and was so taken aback that we hugged almost without saying anything. It was nice to see her again and to be able to thank her for giving me a hard time. She remembered my stay, even though it was over two months ago and after she’s treated many other patients. She asked about my mom, dad and Holly’s mom and wanted to know how I recovered so quickly. I told her about all the awesome people at NRH and all our friends and family who supported us through this. It was just wonderful to see her again – what a blessing. I just need to get in touch with my OT and PT at NNMC and I’ll be a happy camper.
On the way back south on the metro, I started feeling very tired. I almost fell asleep a few times on the train, which is rare for me right after noon. I decided I had better head home, especially since the doctor told me today to not overdo it. I called work, told them I wasn’t coming in and sat on the sofa. I think I fell fast asleep for about 15 minutes. I awoke and went to bed where I slept for another four hours. Either the radiation is starting to take its toll on me already, or I was just exhausted from the long day Monday and the early PT today – or a combination of everything. I’m tired again and need to get back to bed so that I can work a few hours tomorrow.
One last thing – I finally posted a few pics that Kezia took a few weeks ago while at Physical Therapy. They’re just some pics of me doing my workout. Click here to check them out. Lastly, Kezia took some video that day too. You can watch it below or click here to view it. I was undergoing electrical stimulation to try to get my ankle to move. Keep an eye on the tendon that goes from the foot to the leg. When the juice kicks on, the tendon pops out. I am trying to lift my toes off the ground. Looks like fun, eh? I'll have some other pics and videos up soon.
I walked up to the ICU and into the area I remember. I asked if she was working and they said she was eating lunch right around the corner. I walked around the corner and I saw her sitting there. She immediately looked up, lowered her bowl from her face and her jaw dropped and then slowly smiled. It was an awkward reaction to me, but a pleasant one! She remembered me immediately and was so taken aback that we hugged almost without saying anything. It was nice to see her again and to be able to thank her for giving me a hard time. She remembered my stay, even though it was over two months ago and after she’s treated many other patients. She asked about my mom, dad and Holly’s mom and wanted to know how I recovered so quickly. I told her about all the awesome people at NRH and all our friends and family who supported us through this. It was just wonderful to see her again – what a blessing. I just need to get in touch with my OT and PT at NNMC and I’ll be a happy camper.
On the way back south on the metro, I started feeling very tired. I almost fell asleep a few times on the train, which is rare for me right after noon. I decided I had better head home, especially since the doctor told me today to not overdo it. I called work, told them I wasn’t coming in and sat on the sofa. I think I fell fast asleep for about 15 minutes. I awoke and went to bed where I slept for another four hours. Either the radiation is starting to take its toll on me already, or I was just exhausted from the long day Monday and the early PT today – or a combination of everything. I’m tired again and need to get back to bed so that I can work a few hours tomorrow.
One last thing – I finally posted a few pics that Kezia took a few weeks ago while at Physical Therapy. They’re just some pics of me doing my workout. Click here to check them out. Lastly, Kezia took some video that day too. You can watch it below or click here to view it. I was undergoing electrical stimulation to try to get my ankle to move. Keep an eye on the tendon that goes from the foot to the leg. When the juice kicks on, the tendon pops out. I am trying to lift my toes off the ground. Looks like fun, eh? I'll have some other pics and videos up soon.
May 15, 2006
Full Day
Today was one heckuva busy day. Holly and I started at 0630 – we had to be out of the house by 0700 to be at Radiation Therapy before 0800. We got there and we were in and out in a jiffy. Holly took some pics and cool video of my treatment – I’ll try to get it up soon. Next, we whizzed across town for a 0930 appointment with Dr. Milani at NRH where I spent three weeks for therapy. The meeting went well and she’s impressed with my progress. We went upstairs to see all the therapists and staff that helped me get to where I am today. It was great to see them again and they were glad to see me! I promised Max I would get some pics up today, but we got home way too late. I promise I’ll get them up this week Max!
After that, we stopped at The Italian Store to pick up some tasty lunch to eat at home (I got an Italian sub and Holly got some Pizza – try the four cheese pizza, it is the best!) and then Holly went with me to Physical Therapy where we got some more great pics and videos. We then made a pit stop at the grocery store and came home again, I installed 2GB of memory in the desktop (it has been short and I needed to speed things up!) and we were off again to our church community group where I led the discussion tonight. I’d love to get all the pics and videos up tonight, but I really need to get to bed to get some rest after this extra long day.
One side note – I think the hair falling out has begun. I keep finding short dark hairs on my shirt, plate, desk… it must be the radiation doing its thing. But the doctors tell me it should just be temporary, so I’m not worried about it, but it really brings what I’m going through home to me. I need to get to bed… I’ll try to have something more tomorrow.
After that, we stopped at The Italian Store to pick up some tasty lunch to eat at home (I got an Italian sub and Holly got some Pizza – try the four cheese pizza, it is the best!) and then Holly went with me to Physical Therapy where we got some more great pics and videos. We then made a pit stop at the grocery store and came home again, I installed 2GB of memory in the desktop (it has been short and I needed to speed things up!) and we were off again to our church community group where I led the discussion tonight. I’d love to get all the pics and videos up tonight, but I really need to get to bed to get some rest after this extra long day.
One side note – I think the hair falling out has begun. I keep finding short dark hairs on my shirt, plate, desk… it must be the radiation doing its thing. But the doctors tell me it should just be temporary, so I’m not worried about it, but it really brings what I’m going through home to me. I need to get to bed… I’ll try to have something more tomorrow.
May 12, 2006
Thera-Band Magic
I do this exercise everyday at physical therapy where a Thera-Band (basically a big rubber band like tube) is attached to the wall and then around my left ankle. My right foot stays put on the ground and I have to do various exercises to help my balance. I face the wall and pull my left foot away from the wall; then with the wall to my left, I have to pull my left foot to the right; then I face away from the wall and finally with the wall to my right. I do two sets of ten repetitions in each direction, so that’s 80 reps total. When I first started doing these I had a heck of a time staying up without losing my balance with the green band, the third from the highest (next is blue and black is the toughest.) Anyway, we’ve been at this for about a month now and I moved up to the blue recently. Today was the first time I was able to do all 80 reps without having to touch the ground with my left foot or reach for the bar to stay upright. Yes, I lost my balance, but I was able to regain it and keep on going. This was a big improvement for me! It was so great to see some progress and to be able to know that I am still getting better! It is an awesome feeling, but I know that we’re going to move up to black soon, so new challenges await!
We’re still working on getting my right ankle to lift my foot to a higher angle. When I walk, it almost falls flat on the ground. I’m seeing a little bit of improvement there, and today walking seemed to be a little easier. Early in the day walking is easier than later in the day when I get tired. I think that I put too much thought and work into walking and that wears me out too. We’re still doing the electrical stimulation to try to get my foot to lift higher. Holly might go with me to PT on Monday; maybe we’ll take some video so that you can see what I’m talking about. My legs are getting stronger as is my arm. I am able to write clearer now and rounded letters don’t look jagged anymore. I also have a follow-up appointment with Dr. Milani at NRH. She was my doctor when I was an inpatient there. She’ll have some say regarding how much more PT I’ll need. Since we’re still seeing improvement and there are still things that can be better, I think I’ll be in PT through June. I’ll fill you in on that when I find out. The weekend is shaping up to be a wet one at times. We’re taking our good friend, Johnny, to lunch and shopping tomorrow as a housewarming gift. I have no idea what the evening holds in store. Have a great weekend!
We’re still working on getting my right ankle to lift my foot to a higher angle. When I walk, it almost falls flat on the ground. I’m seeing a little bit of improvement there, and today walking seemed to be a little easier. Early in the day walking is easier than later in the day when I get tired. I think that I put too much thought and work into walking and that wears me out too. We’re still doing the electrical stimulation to try to get my foot to lift higher. Holly might go with me to PT on Monday; maybe we’ll take some video so that you can see what I’m talking about. My legs are getting stronger as is my arm. I am able to write clearer now and rounded letters don’t look jagged anymore. I also have a follow-up appointment with Dr. Milani at NRH. She was my doctor when I was an inpatient there. She’ll have some say regarding how much more PT I’ll need. Since we’re still seeing improvement and there are still things that can be better, I think I’ll be in PT through June. I’ll fill you in on that when I find out. The weekend is shaping up to be a wet one at times. We’re taking our good friend, Johnny, to lunch and shopping tomorrow as a housewarming gift. I have no idea what the evening holds in store. Have a great weekend!
May 11, 2006
Itchy
The top of my head is starting to get kinda itchy. Actually, it’s the area that would appear to be right where the tumor was and where the radiation is focused. At first I thought I was just thinking it was irritated, but now I know it’s not just me. It feels kind of like… um… well… okay – I have a good example – have you ever slept hard… so hard that when you wake up - your hair hurts a little? Where you slept on your hair in a funky way to make it go the opposite way of how it grows out? It feels weird when you touch it, but it usually goes away after a shower or something. I don’t know if you’ve ever experienced that before or not, but that’s how my head feels – and now it’s getting itchy too. And even the hair on the front of my head right above my forehead it getting irritated. They hit me from the front, right, left and back of my head. The radiation beams all converge on the target area where the tumor is. The only places I have long (for a military guy) hair are on the top and front, maybe that’s why those bother me now. It’s not a big deal, but if it is irritating after just two weeks, I can’t imagine what another four weeks will feel like. Other than the hair thing, I feel fine. The last scab fell off the incision this week. The actual incision line itself is pink, but it must still be healing underneath.
Incidentally, we removed the throne from over the toilet and the shower transfer bench a few weeks ago. I’m getting around pretty good and can stand long enough to not need them anymore. I haven’t used the cane in weeks and I’m able to stand if necessary on the metro. But I usually target the first or last cars of a train, which always seem to be less crowded. I have not used the cane in weeks, but we’re going to keep the cane and wheelchair handy --- just in case the radiation takes its toll. But we’re praying against that (join us, will you?) The week has gone pretty good thus far. I was pretty pooped when I got to work around noon and didn’t snap out of it until after dinner. It may have been the big lunch I had at the hospital cafeteria. Let me tell you, I have been able to eat lunch there every day this week for under four bucks each time. Sometimes under two bucks and I get enough to eat. It is fantastic and the food is pretty balanced too. I’m going to continue to eat there as long as I have to go there to make sure I’m getting fed well.
That’s all for tonight… we got a ton of rain tonight. We’ve needed it, so it was nice to have it. We’re supposed to get rain all weekend.
Incidentally, we removed the throne from over the toilet and the shower transfer bench a few weeks ago. I’m getting around pretty good and can stand long enough to not need them anymore. I haven’t used the cane in weeks and I’m able to stand if necessary on the metro. But I usually target the first or last cars of a train, which always seem to be less crowded. I have not used the cane in weeks, but we’re going to keep the cane and wheelchair handy --- just in case the radiation takes its toll. But we’re praying against that (join us, will you?) The week has gone pretty good thus far. I was pretty pooped when I got to work around noon and didn’t snap out of it until after dinner. It may have been the big lunch I had at the hospital cafeteria. Let me tell you, I have been able to eat lunch there every day this week for under four bucks each time. Sometimes under two bucks and I get enough to eat. It is fantastic and the food is pretty balanced too. I’m going to continue to eat there as long as I have to go there to make sure I’m getting fed well.
That’s all for tonight… we got a ton of rain tonight. We’ve needed it, so it was nice to have it. We’re supposed to get rain all weekend.
May 8, 2006
Busy busy!!
I just love Mondays, don’t you? I have been able to slide into a somewhat regular schedule now that I know what the heck I need to do each day. Three days a week my schedule looks similar to this:
0600-0750 Wake, shower, eat breakfast
0750-0800 Walk to Physical Therapy
0800-0930 Physical Therapy
0930-0940 Walk home
0940-1000 Change clothes and get ready for the rest of the day
1000-1100 Metro to Medical Center (Bethesda NNMC)
1100-1110 Walk to NNMC
1110-1120 Check In at Radiation/Oncology and Wait
1120-1150 Radiation Treatment
1150-1220 Lunch
1220-1230 Walk back to the Metro
1230-1330 Metro to Anacostia
1330-1400 Take shuttle bus from Anacostia to Work
1400-1700 Work
1700-1800 Shuttle and Metro back home to Virginia Square
1800-2200 Eat, chill, spend time with Holly
2200-0600 Sleep!!
Okay, so not every day goes exactly like this, but I had to work out something that is close to this so that I know when to be where. Most days it goes nothing like this, trains run late, shuttle busses run extremely late! Sometimes I score a ride from someone and I am able to get to stuff quicker. I hate the fact that I have to spend about three to three and a half hours a day commuting, but that won’t last forever. But I do get to listen to some good music, read and do easy exercises (sitting down – the ones that are inconspicuous, ya know?) on the train. I do have some good news though… I found out last week that I will be working a good part of the time at the Pentagon as a Liaison between our Branch and the IT folks over there. This will make commuting much easier since there is a Metro station right at the Pentagon and I won’t have to wait for a shuttle bus. I think it will be easier on my body too. Plus, I’ll be closer to Holly’s work, only two stations! I’ll be going to the Pentagon for the first time tomorrow; I’ll let you know how that goes.
0600-0750 Wake, shower, eat breakfast
0750-0800 Walk to Physical Therapy
0800-0930 Physical Therapy
0930-0940 Walk home
0940-1000 Change clothes and get ready for the rest of the day
1000-1100 Metro to Medical Center (Bethesda NNMC)
1100-1110 Walk to NNMC
1110-1120 Check In at Radiation/Oncology and Wait
1120-1150 Radiation Treatment
1150-1220 Lunch
1220-1230 Walk back to the Metro
1230-1330 Metro to Anacostia
1330-1400 Take shuttle bus from Anacostia to Work
1400-1700 Work
1700-1800 Shuttle and Metro back home to Virginia Square
1800-2200 Eat, chill, spend time with Holly
2200-0600 Sleep!!
Okay, so not every day goes exactly like this, but I had to work out something that is close to this so that I know when to be where. Most days it goes nothing like this, trains run late, shuttle busses run extremely late! Sometimes I score a ride from someone and I am able to get to stuff quicker. I hate the fact that I have to spend about three to three and a half hours a day commuting, but that won’t last forever. But I do get to listen to some good music, read and do easy exercises (sitting down – the ones that are inconspicuous, ya know?) on the train. I do have some good news though… I found out last week that I will be working a good part of the time at the Pentagon as a Liaison between our Branch and the IT folks over there. This will make commuting much easier since there is a Metro station right at the Pentagon and I won’t have to wait for a shuttle bus. I think it will be easier on my body too. Plus, I’ll be closer to Holly’s work, only two stations! I’ll be going to the Pentagon for the first time tomorrow; I’ll let you know how that goes.
May 3, 2006
Radiation Annihilation!!
Okay – so it has been a pretty busy week. Three days a week I have to walk a few blocks to be at physical therapy for an hour and a half of what lately has been very tiring work. But I am not complaining… I need it and it’s all good. I have to walk back home and gather my things for the hour metro trip to NNMC for my radiation. I may or may not eat a pretty darn good lunch for a couple of bucks and then I have to metro to work another hour to work, take a shuttle bus (which is not timely) and try to get some work done. Then hop on the shuttle again for another long metro ride home. I was lucky enough to score a ride from Kezia today, but trying to pin down a constant schedule has been a challenge. Every day has been different, and that is tiring in itself. I am trying to work out a more normal schedule that makes everyone happy. But right now, it’s a little confusing and I am relying heavily on Outlook and my Cingular 2125 Windows 5.0 SmartPhone to keep me on track. Thank goodness for technology!
On another note, my surgery was two months ago today (Mar 3) and I’m feeling great! I really am doing quite well. The radiation is going fine – the sessions actually only last about ten minutes. It takes me much longer to get there and wait for them to call me back than it does to do the treatment. I saw the radiologist’s report from the planning MRI I had a few weeks ago and it appears that the sliver of whatever they see (could be scar tissue or tumor that was left behind) has grown. How much? I’m not sure, but it is not significant. And, the radiation therapy should kill off any remaining tumor, if there is any left behind. So, we’re going down the right path and I’ve put this squarely in God’s hands. I’m just going to stay as healthy as possible during the therapy. I’m going to continue to go to Physical Therapy, start riding my bike (on the trainer which I recently bought, not outside yet) and eat healthy too. My body needs as much help as possible to combat the effects of the radiation so that it can rebuild damaged cells and teach them how to do their job. I just want to make sure that only tumor cells are being annihilated, not the good ones! :-P
That’s all for now… Sorry we haven’t been posting a lot this week, but getting back into a routine where I am out of the house this much has been taxing and tiring. When I get home, I just want to drink some cool water and rest with my one and only, my Holly. I’ll try to get some more new pics and videos up soon.
On another note, my surgery was two months ago today (Mar 3) and I’m feeling great! I really am doing quite well. The radiation is going fine – the sessions actually only last about ten minutes. It takes me much longer to get there and wait for them to call me back than it does to do the treatment. I saw the radiologist’s report from the planning MRI I had a few weeks ago and it appears that the sliver of whatever they see (could be scar tissue or tumor that was left behind) has grown. How much? I’m not sure, but it is not significant. And, the radiation therapy should kill off any remaining tumor, if there is any left behind. So, we’re going down the right path and I’ve put this squarely in God’s hands. I’m just going to stay as healthy as possible during the therapy. I’m going to continue to go to Physical Therapy, start riding my bike (on the trainer which I recently bought, not outside yet) and eat healthy too. My body needs as much help as possible to combat the effects of the radiation so that it can rebuild damaged cells and teach them how to do their job. I just want to make sure that only tumor cells are being annihilated, not the good ones! :-P
That’s all for now… Sorry we haven’t been posting a lot this week, but getting back into a routine where I am out of the house this much has been taxing and tiring. When I get home, I just want to drink some cool water and rest with my one and only, my Holly. I’ll try to get some more new pics and videos up soon.
May 1, 2006
Radiation Starts Today (8:45 a.m. EDT)
Please keep Roger in your prayers today. He had to be at Bethesda Naval Hospital this morning at 8:45 a.m. for his first radiation session. From there he goes to physical therapy near our apartment, home to change and then work in DC. This will require six Metro trips. It's going to be a long day for him. Please ask God to protect him and give him strength, endurance and wisdom to know when he needs to rest or go home for the day. Pleasae pray that his employers remain understanding during this time and continue to encourage him that his health and recovery are first. Thank you all for your prayers.
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