This is the year!
DAY 8
Tuesday, January 27, 2015
8:09pm
I'm all done!!!!!!!!!!!!!!!!!! (for now)
My last test was this morning. I had an MRI of the spine at 6:45am. I didn't have to fast today so I actually got to eat breakfast food at the cafeteria before my appointment at the Pheo/Endo Clinic. The first 45 minutes of the appointment was vitals and answering questions in detail about my medical history. Then I sat down in the conference room with the team and finally met Dr. Pacak. It was so great being able to talk with him and learn about what has been going on with me. I felt kind of dumb asking so many questions, but we've really known nothing about this for 9 years.
I have the SDHD mutation. He broke that down for me in terms that I would understand, which was great. I had 4 different PET scans done here: FDA, DOPA, FDG, and DOTATATE. My body responded best to the DOTATATE. There is one more scan that he wants me to have done, but I'll have to do that when I get home. It's an MIBG scan. If it's positive, then they can easily treat me here. If it's negative, then there are a couple other options of treatments. I'll probably be back here in a few months.
Dad got his wristband today. He has to fast and go in tomorrow morning for bloodwork before we head home. This "snowmageddon" thing was a joke. Every news story we've heard over the last few days has sounded ridiculous. Calling it the storm of the century..oh please. Anyways, we shouldn't have a problem flying out of here tomorrow evening. I can't wait to get home. I need a massage and some wine. I miss my dogs. We check out of the lodge at 11:00 and fly out of DC at 5:45pm. Yay.
I'm all done!!!!!!!!!!!!!!!!!! (for now)
My last test was this morning. I had an MRI of the spine at 6:45am. I didn't have to fast today so I actually got to eat breakfast food at the cafeteria before my appointment at the Pheo/Endo Clinic. The first 45 minutes of the appointment was vitals and answering questions in detail about my medical history. Then I sat down in the conference room with the team and finally met Dr. Pacak. It was so great being able to talk with him and learn about what has been going on with me. I felt kind of dumb asking so many questions, but we've really known nothing about this for 9 years.
I have the SDHD mutation. He broke that down for me in terms that I would understand, which was great. I had 4 different PET scans done here: FDA, DOPA, FDG, and DOTATATE. My body responded best to the DOTATATE. There is one more scan that he wants me to have done, but I'll have to do that when I get home. It's an MIBG scan. If it's positive, then they can easily treat me here. If it's negative, then there are a couple other options of treatments. I'll probably be back here in a few months.
Dad got his wristband today. He has to fast and go in tomorrow morning for bloodwork before we head home. This "snowmageddon" thing was a joke. Every news story we've heard over the last few days has sounded ridiculous. Calling it the storm of the century..oh please. Anyways, we shouldn't have a problem flying out of here tomorrow evening. I can't wait to get home. I need a massage and some wine. I miss my dogs. We check out of the lodge at 11:00 and fly out of DC at 5:45pm. Yay.
DAY 7
Monday, January 26, 2015
8:37pm
Happy birthday to my brother, Brian, my sister, Hannah, and Ellen DeGeneres!
I know you're all hearing about this "storm of the century", but it's really not as bad as they're saying on tv. At least not down here. I know Boston is supposed to get hit bad. There was actually more snow last week than today.
This morning I had an appointment at the Eye Clinic. They were all the same tests I had done back at home, but with a nicer doctor. I got some pretty good information from her, yet still, no one knows what is causing the double vision. I was there for over 2 hours. It started at 9:00, I had an appointment with phlebotomy at 10:00, and a PET scan at 11:00. So everything got backed up a little. Luckily all I had to do was pee in a cup at the lab, and they weren't ready for me yet at radiology to give the injection. Once, I got the injection, I had to sit there for 45 minutes anyways. I finally got to eat at 1:45pm. Today was my last day of fasting. Thank God! I do have to be up early tomorrow though. I have an MRI at 6:45am. Yuck. Tonight we are back at the hotel. So we have to take a taxi onto the NIH campus in the morning. Hopefully we don't have another incident like last week...
Happy birthday to my brother, Brian, my sister, Hannah, and Ellen DeGeneres!
I know you're all hearing about this "storm of the century", but it's really not as bad as they're saying on tv. At least not down here. I know Boston is supposed to get hit bad. There was actually more snow last week than today.
This morning I had an appointment at the Eye Clinic. They were all the same tests I had done back at home, but with a nicer doctor. I got some pretty good information from her, yet still, no one knows what is causing the double vision. I was there for over 2 hours. It started at 9:00, I had an appointment with phlebotomy at 10:00, and a PET scan at 11:00. So everything got backed up a little. Luckily all I had to do was pee in a cup at the lab, and they weren't ready for me yet at radiology to give the injection. Once, I got the injection, I had to sit there for 45 minutes anyways. I finally got to eat at 1:45pm. Today was my last day of fasting. Thank God! I do have to be up early tomorrow though. I have an MRI at 6:45am. Yuck. Tonight we are back at the hotel. So we have to take a taxi onto the NIH campus in the morning. Hopefully we don't have another incident like last week...
My legs are extremely sore from yesterday's festivities. Here are some of the highlights:
DAY 6
Sunday, January 25, 2015
9:58pm
Well, I am worn out!! What a busy, but FUN day. Woke up at 6:00am, and we didn't get back to the lodge until 9:00pm. We took the metro into D.C. this morning to do a Big Bus Tour. I would say the majority of the day was spent walking rather than on the bus. The first place we went to was the Air and Space Museum. Very very cool. Tons of planes. Lots of interesting information in the museum. Amelia Earhart, WWII, Vietnam, Wright Brothers.
Then we walked over to the Smithsonian Castle. Not much to see there, but an awesome building.
The Holocaust Memorial Museum actually had a Holocaust survivor there speaking when we arrived. She was such a sweet lady. Those stories really hurt my heart. Great museum if you're into that sort of thing.
The Washington Monument could be seen all around the capitol. We didn't bother taking the elevator to the top. The best was seeing it from the Lincoln Memorial. This was probably the first thing on my dad's list of what he wanted to see...standing where Forrest Gump gave his speech about "the war in Vietnam". And, they's only one thang he could say about the war in Vietnam. hahaha.. That whole area was probably the most crowded of the day.
Next was the Arlington Cemetery in Virginia. I was completely mesmerized. I have never seen so many graves in my life. Each one has a number. There would be a Korean War Vet next to a WWI Vet next to a Vietnam Vet. They were all randomly scattered, and I think that made it so much more memorable; that all these men from every war were not just put off in their own sections, but mixed together as one entire military family who fought to protect our country. It was so heart-breaking, but a truly beautiful place. We didn't walk all the way to the top because my legs were starting to wear out by that time, so we walked to JFK's memorial and then back down.
The Iwo Jima Statue wasn't apart of the tour, so we ended up walking all the way over to it from the cemetery. All we did was take a few pictures before trekking on to the next metro station, which wasn't close at all, and taking us to the Pentagon Shopping Mall. We hadn't eaten all day, so that was basically just a food pit stop. I really wanted to go over to the Pentagon 9/11 Memorial, but we just didn't have time. So I'll have to go back when I'm visiting my best friend in Virginia over the next year and catch everything I missed. I didn't get to see the American History Museum or the White House up close either.
Our tour ticket included a free pass to Madame Tussauds, so that was the last thing we did. The bus ride from the Pentagon to there was miserable. We sat on the top deck. It was freeezing! Plus, there was tons of traffic by that time, so it took forever to get over there. Ford's Theatre was closed when we got there, so I missed that too. But the wax museum was fun.
Our night ended at the Hard Rock Cafe across the street. I am so glad I had yesterday to rest so that I could enjoy today. Also, my leg pain that I had been feeling the last few days was gone, so thank you if you prayed for that. I never would have been able to do the walking I did all over the place today.
Dad is already knocked out. Here are just a few of the photos from today's adventure. I'll post all the ones from my camera tomorrow when I'm done with my tests.
Today was quite bittersweet for me, but especially for my dad. My grandpa had already been on my mind knowing some of the places we were going to be seeing. When we were in the WWII section of the Air and Space Museum my dad said, "We would never have been able to get dad out of here." The whole day I was thinking how great it would've been to bring my big papa here before he died. I kind of felt unworthy to all the history we took in today because I never lived through it. If you have a relative that's still alive who served our country, I would recommend taking a trip to Washington D.C. I know how much my papa would've loved seeing everything my dad and I saw today. It really was an amazing experience. I'm thankful I had the weekend off from testing to enjoy this day with my dad.
Sweet dreams everyone.
Well, I am worn out!! What a busy, but FUN day. Woke up at 6:00am, and we didn't get back to the lodge until 9:00pm. We took the metro into D.C. this morning to do a Big Bus Tour. I would say the majority of the day was spent walking rather than on the bus. The first place we went to was the Air and Space Museum. Very very cool. Tons of planes. Lots of interesting information in the museum. Amelia Earhart, WWII, Vietnam, Wright Brothers.
Then we walked over to the Smithsonian Castle. Not much to see there, but an awesome building.
The Holocaust Memorial Museum actually had a Holocaust survivor there speaking when we arrived. She was such a sweet lady. Those stories really hurt my heart. Great museum if you're into that sort of thing.
The Washington Monument could be seen all around the capitol. We didn't bother taking the elevator to the top. The best was seeing it from the Lincoln Memorial. This was probably the first thing on my dad's list of what he wanted to see...standing where Forrest Gump gave his speech about "the war in Vietnam". And, they's only one thang he could say about the war in Vietnam. hahaha.. That whole area was probably the most crowded of the day.
Next was the Arlington Cemetery in Virginia. I was completely mesmerized. I have never seen so many graves in my life. Each one has a number. There would be a Korean War Vet next to a WWI Vet next to a Vietnam Vet. They were all randomly scattered, and I think that made it so much more memorable; that all these men from every war were not just put off in their own sections, but mixed together as one entire military family who fought to protect our country. It was so heart-breaking, but a truly beautiful place. We didn't walk all the way to the top because my legs were starting to wear out by that time, so we walked to JFK's memorial and then back down.
The Iwo Jima Statue wasn't apart of the tour, so we ended up walking all the way over to it from the cemetery. All we did was take a few pictures before trekking on to the next metro station, which wasn't close at all, and taking us to the Pentagon Shopping Mall. We hadn't eaten all day, so that was basically just a food pit stop. I really wanted to go over to the Pentagon 9/11 Memorial, but we just didn't have time. So I'll have to go back when I'm visiting my best friend in Virginia over the next year and catch everything I missed. I didn't get to see the American History Museum or the White House up close either.
Our tour ticket included a free pass to Madame Tussauds, so that was the last thing we did. The bus ride from the Pentagon to there was miserable. We sat on the top deck. It was freeezing! Plus, there was tons of traffic by that time, so it took forever to get over there. Ford's Theatre was closed when we got there, so I missed that too. But the wax museum was fun.
Our night ended at the Hard Rock Cafe across the street. I am so glad I had yesterday to rest so that I could enjoy today. Also, my leg pain that I had been feeling the last few days was gone, so thank you if you prayed for that. I never would have been able to do the walking I did all over the place today.
Dad is already knocked out. Here are just a few of the photos from today's adventure. I'll post all the ones from my camera tomorrow when I'm done with my tests.
Today was quite bittersweet for me, but especially for my dad. My grandpa had already been on my mind knowing some of the places we were going to be seeing. When we were in the WWII section of the Air and Space Museum my dad said, "We would never have been able to get dad out of here." The whole day I was thinking how great it would've been to bring my big papa here before he died. I kind of felt unworthy to all the history we took in today because I never lived through it. If you have a relative that's still alive who served our country, I would recommend taking a trip to Washington D.C. I know how much my papa would've loved seeing everything my dad and I saw today. It really was an amazing experience. I'm thankful I had the weekend off from testing to enjoy this day with my dad.
Sweet dreams everyone.
<<click on the photos to make them bigger>>
DAY 4&5
7:29pm
Sorry I didn't post yesterday. I was so exhausted last night, and I've been sleeping all day today.
Yesterday I had to be over at Phlebotomy at 7:15am. I have to do a pregnancy test everyday. My CT was on my schedule for 8:15, but they seemed to be held up quite a bit over there. Turns out they only had one CT scanner working in the morning. I had to down this jug of water from the pharmacy before the scan. There's something in it for the CT. Once they finally called my name, they took me back to ANOTHER waiting room. I was in there for a while before they took me to check on my IV, which apparently wasn't flushing well, so they needed to put another one in. They use ultrasounds here to find veins. This nurse checked for a while before sending me upstairs to the Procedure Unit to have them do it. They needed a large needle, and my veins are terrible if you know me. So this wasn't out of the ordinary at all for me. I was up there for a looong time. She got me on her second try, but she was searching with the ultrasound for like 30 minutes before even starting. I had to go back down to CT when I was done there, only to wait some more. I didn't get called in for the scan until 11:00, which was making me nervous because at 11:15 I had to take these 8 Carbidopa tablets for my next PET scan which was at 11:45. Luckily CT's are only about 5 minutes. I really hate them though because the injection makes your body burn, especially the bladder.
My PET scan injection had to happen exactly an hour after the pills were taken. So that was done at 12:15pm. Then I had to sit for 20 minutes until they could take me back for the scan. That one was about 40 minutes. About 1:30pm I was all done and could FINALLY eat. Yesterday was very exhausting for me. My leg has been in tons of pain. I can't walk normal, so I've been limping around everywhere. The pain is so sharp. I really hope it goes away soon. It on my hip/femur replacement side. My femur and knee are just killing me when I'm walking.
The rest of the evening was spent resting and napping. My dad went over to the cafeteria to get food and bring it back to the lodge. I wasn't very hungry last night. This morning we got to sleep in. That was great. Dad went over to the cafeteria this morning again while I was sleeping. He brought back some breakfast for me and left it in the fridge til I was ready to get up. And then I slept until about 5:45pm. I'm glad we have the weekend off. I needed this day to do nothing, rest my leg, and sleep. We ordered food for dinner tonight, so we're just waiting on that to be delivered. And then we've just been planning our day for tomorrow. We are going into DC to do a Big Bus Tour.
I added a new Forum section to the page where you can respond to my posts. It's under the "2015" tab.
See you guys tomorrow!
Sorry I didn't post yesterday. I was so exhausted last night, and I've been sleeping all day today.
Yesterday I had to be over at Phlebotomy at 7:15am. I have to do a pregnancy test everyday. My CT was on my schedule for 8:15, but they seemed to be held up quite a bit over there. Turns out they only had one CT scanner working in the morning. I had to down this jug of water from the pharmacy before the scan. There's something in it for the CT. Once they finally called my name, they took me back to ANOTHER waiting room. I was in there for a while before they took me to check on my IV, which apparently wasn't flushing well, so they needed to put another one in. They use ultrasounds here to find veins. This nurse checked for a while before sending me upstairs to the Procedure Unit to have them do it. They needed a large needle, and my veins are terrible if you know me. So this wasn't out of the ordinary at all for me. I was up there for a looong time. She got me on her second try, but she was searching with the ultrasound for like 30 minutes before even starting. I had to go back down to CT when I was done there, only to wait some more. I didn't get called in for the scan until 11:00, which was making me nervous because at 11:15 I had to take these 8 Carbidopa tablets for my next PET scan which was at 11:45. Luckily CT's are only about 5 minutes. I really hate them though because the injection makes your body burn, especially the bladder.
My PET scan injection had to happen exactly an hour after the pills were taken. So that was done at 12:15pm. Then I had to sit for 20 minutes until they could take me back for the scan. That one was about 40 minutes. About 1:30pm I was all done and could FINALLY eat. Yesterday was very exhausting for me. My leg has been in tons of pain. I can't walk normal, so I've been limping around everywhere. The pain is so sharp. I really hope it goes away soon. It on my hip/femur replacement side. My femur and knee are just killing me when I'm walking.
The rest of the evening was spent resting and napping. My dad went over to the cafeteria to get food and bring it back to the lodge. I wasn't very hungry last night. This morning we got to sleep in. That was great. Dad went over to the cafeteria this morning again while I was sleeping. He brought back some breakfast for me and left it in the fridge til I was ready to get up. And then I slept until about 5:45pm. I'm glad we have the weekend off. I needed this day to do nothing, rest my leg, and sleep. We ordered food for dinner tonight, so we're just waiting on that to be delivered. And then we've just been planning our day for tomorrow. We are going into DC to do a Big Bus Tour.
I added a new Forum section to the page where you can respond to my posts. It's under the "2015" tab.
See you guys tomorrow!
DAY 3
10:34pm
Today was pretty chill. I had to go to the lab at 8:00. Then at 9:30 I had a DOTATATE PET scan. This was an injection, and then waiting an hour to do the scan. This injection stung a little. As soon as she flushed my IV I got extremely nauseous and asked her if I was supposed to be feeling sick from it. She told me she didn't want to tell me that ahead of time because everyone reacts differently, and didn't want it to be all in my head. Sneaky. It went away after a minute, but it was not a good feeling. After that scan I was allowed to eat. I have to fast every morning until it says on my schedule that I'm allowed to eat. Like tomorrow, I can't eat until 1:00pm. Anyways, we had about 6 hours to ourselves after that, so SLEEP it was! Haha.. I took a loooong nap. We found out today that one of the cafeterias is open until 8:00pm on the weekdays, so we had dinner there before my MRI at 8:00. It took about an hour and a half. I had to stay awake for this one because they had me holding my breath for a lot of the images. I have to say that I really don't like doing that. I'm not a fan of holding my breath, but I got through it okay.
Dad is already asleep, as usual. I was up til about 2:00am last night updating my blog and talking to friends. Hopefully I don't stay up that late again tonight.
Good night everyone!
Today was pretty chill. I had to go to the lab at 8:00. Then at 9:30 I had a DOTATATE PET scan. This was an injection, and then waiting an hour to do the scan. This injection stung a little. As soon as she flushed my IV I got extremely nauseous and asked her if I was supposed to be feeling sick from it. She told me she didn't want to tell me that ahead of time because everyone reacts differently, and didn't want it to be all in my head. Sneaky. It went away after a minute, but it was not a good feeling. After that scan I was allowed to eat. I have to fast every morning until it says on my schedule that I'm allowed to eat. Like tomorrow, I can't eat until 1:00pm. Anyways, we had about 6 hours to ourselves after that, so SLEEP it was! Haha.. I took a loooong nap. We found out today that one of the cafeterias is open until 8:00pm on the weekdays, so we had dinner there before my MRI at 8:00. It took about an hour and a half. I had to stay awake for this one because they had me holding my breath for a lot of the images. I have to say that I really don't like doing that. I'm not a fan of holding my breath, but I got through it okay.
Dad is already asleep, as usual. I was up til about 2:00am last night updating my blog and talking to friends. Hopefully I don't stay up that late again tonight.
Good night everyone!
DAY 2
Wednesday, January 21, 2015
11:55pm
Finally getting a chance to sit down and write a detailed update. Today was my first day of tests. I had labs at 6:30 this morning, and then another special lab where I had to be lying flat and resting. Only 2 pokes today: one for my first set of labs, and the other for an IV. I would say that's a win. I got to meet Karen Adams today. She is the coordinator of this whole operation. I hadn't heard from her in almost a week, so I was a bit on edge, and eager to meet her. You guys, I love her! Thank you for all the prayers. They were truly answered during this meeting. I also got to meet the team working with her. They were very nice as well. There was so much information thrown at me this morning, and after talking things over with her, she ended up adding some more tests to my schedule. I have never felt so taken care of. When she left, my eyes filled up with tears. I was so overwhelmed, but in the best way because I have never met people so knowledgeable with this disease. When I brought up my concerns about the schedule and explained more about why I was here, they shared my concerns and wanted to make sure my problem areas were focused on, which led to the extra tests. I cannot believe I am actually here.
I had an hour long PET scan this afternoon, and an MRI this evening. Lying there for so long with nothing to do is usually when I do my best thinking, and praying. The last 9 years I have been trying to be so patient. It's not my best quality. I feel like I spend most of my life "waiting". Waiting for answers. I have not stopped praying for answers. I have been so alone since my diagnosis. People left me. I shut others out. I kept to myself. I never wanted to talk to anyone because nobody understood. I have only been here a day and a half, and I have never felt more free. This really is the year. No more waiting! And I mean this in every aspect of my life, not just medically. I can feel it. This is going to be my year.
I finished my PET around 1:00pm and was finally able to eat. I had to fast all morning, and that will be my routine everyday while I am here. When I got out of the scan, my dad told me to look out the window. It started snowing while I was in there. Oh, it was so beautiful. We hurried over to the front entrance and everyone was standing around looking out. My dad rushed me outside so that we could take a "selfie" in the snow. Everyone inside was laughing. We didn't care.
After lunch we were able to check-in to lodging here on the campus. That took a while, but we have a great corner room with a view of the main building. And lastly, I had an MRI at 6:15 tonight. When we got there they said it wasn't until 7:00. That was delayed 20 minutes by someone ahead of me. And then I was in there for about 3 hours. It was a long MRI. This might be weird, but I love looking at Open MRI machines. Lol. I'm so used to the one I use all the time that is all old and enclosed. It was just so pretty. Haha.
Oh! I almost forgot!! So this morning we had to get a taxi to take us and our luggage from the hotel to NIH because the shuttles don't run that early. The hotel called us one. It smelled so bad in there and our driver wasn't friendly at all. In fact, nobody here has been very friendly, but of course my dad tries to make everybody laugh with his lame humor, which tends to do the trick. Anyways, entering NIH is a miserable task. If you don't have a badge(we finally got ours today) you have to stop at the gate, get out of the vehicle, bring your luggage over through a scanner, then walk through a metal detector, hand over your license, get a temporary badge, and then you can finally get back in the vehicle and drive on. So we had to do that with the taxi driver. Well, apparently he had an open alcohol container, and perhaps drugs, in the cab, which held us up even longer, and he's just racking up the meter with all this time rolling by. What a jerk. He was so full of it. He knew what he was doing, stalling everything. That's how our morning got started.
It's been a long day, and dad is already asleep. I should get some rest too. Enjoy these photos from today!
Finally getting a chance to sit down and write a detailed update. Today was my first day of tests. I had labs at 6:30 this morning, and then another special lab where I had to be lying flat and resting. Only 2 pokes today: one for my first set of labs, and the other for an IV. I would say that's a win. I got to meet Karen Adams today. She is the coordinator of this whole operation. I hadn't heard from her in almost a week, so I was a bit on edge, and eager to meet her. You guys, I love her! Thank you for all the prayers. They were truly answered during this meeting. I also got to meet the team working with her. They were very nice as well. There was so much information thrown at me this morning, and after talking things over with her, she ended up adding some more tests to my schedule. I have never felt so taken care of. When she left, my eyes filled up with tears. I was so overwhelmed, but in the best way because I have never met people so knowledgeable with this disease. When I brought up my concerns about the schedule and explained more about why I was here, they shared my concerns and wanted to make sure my problem areas were focused on, which led to the extra tests. I cannot believe I am actually here.
I had an hour long PET scan this afternoon, and an MRI this evening. Lying there for so long with nothing to do is usually when I do my best thinking, and praying. The last 9 years I have been trying to be so patient. It's not my best quality. I feel like I spend most of my life "waiting". Waiting for answers. I have not stopped praying for answers. I have been so alone since my diagnosis. People left me. I shut others out. I kept to myself. I never wanted to talk to anyone because nobody understood. I have only been here a day and a half, and I have never felt more free. This really is the year. No more waiting! And I mean this in every aspect of my life, not just medically. I can feel it. This is going to be my year.
I finished my PET around 1:00pm and was finally able to eat. I had to fast all morning, and that will be my routine everyday while I am here. When I got out of the scan, my dad told me to look out the window. It started snowing while I was in there. Oh, it was so beautiful. We hurried over to the front entrance and everyone was standing around looking out. My dad rushed me outside so that we could take a "selfie" in the snow. Everyone inside was laughing. We didn't care.
After lunch we were able to check-in to lodging here on the campus. That took a while, but we have a great corner room with a view of the main building. And lastly, I had an MRI at 6:15 tonight. When we got there they said it wasn't until 7:00. That was delayed 20 minutes by someone ahead of me. And then I was in there for about 3 hours. It was a long MRI. This might be weird, but I love looking at Open MRI machines. Lol. I'm so used to the one I use all the time that is all old and enclosed. It was just so pretty. Haha.
Oh! I almost forgot!! So this morning we had to get a taxi to take us and our luggage from the hotel to NIH because the shuttles don't run that early. The hotel called us one. It smelled so bad in there and our driver wasn't friendly at all. In fact, nobody here has been very friendly, but of course my dad tries to make everybody laugh with his lame humor, which tends to do the trick. Anyways, entering NIH is a miserable task. If you don't have a badge(we finally got ours today) you have to stop at the gate, get out of the vehicle, bring your luggage over through a scanner, then walk through a metal detector, hand over your license, get a temporary badge, and then you can finally get back in the vehicle and drive on. So we had to do that with the taxi driver. Well, apparently he had an open alcohol container, and perhaps drugs, in the cab, which held us up even longer, and he's just racking up the meter with all this time rolling by. What a jerk. He was so full of it. He knew what he was doing, stalling everything. That's how our morning got started.
It's been a long day, and dad is already asleep. I should get some rest too. Enjoy these photos from today!
Stuck in my head all day thanks to being in Maryland! Hahaha ------>
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DAY 1
Tuesday, January 20, 2015
7:44pm
We made it! My dad and I arrived in DC this morning. This whole day has been a lot of back and forth between NIH and our hotel, which is not on campus. The security is very tight here. We have to get out of the shuttle and go through a metal detector, then back onto the shuttle every time we drive on the site. Other than filling out some paperwork, today was pretty boring. I have blood work tomorrow morning at 6:30, so I'll be heading off to bed pretty soon. Traveling is always so exhausting. Good night! |
Monday, January 19, 2015
8:03pm
Well, I'm about to head off to the airport with my Dad. I can't believe this is finally happening. Things were kind of bumpy last week trying to coordinate with NIH, but hopefully once we get there it will go a lot smoother. I'm going to need a lot of prayers for that because I've heard it can be quite chaotic and stressful.
I want to thank everyone from the bottom of my heart for all of the donations. The total cost ended up being three times what I had originally planned on, and I wouldn't have been able to afford any of this without your help. The kind words of encouragement and constant prayers have lifted my spirits up more than ever. It makes me so emotional to think about how many of you have been following my story and praying for me over the years. And I know this because of everyone telling me how much I deserve this chance to finally get the answers I've been longing for. It is like you have all been waiting along with me.
Keep checking back for updates while I am in Maryland. I will do my best to post daily on here and/or Facebook.
Cheers!
-Michelle
Well, I'm about to head off to the airport with my Dad. I can't believe this is finally happening. Things were kind of bumpy last week trying to coordinate with NIH, but hopefully once we get there it will go a lot smoother. I'm going to need a lot of prayers for that because I've heard it can be quite chaotic and stressful.
I want to thank everyone from the bottom of my heart for all of the donations. The total cost ended up being three times what I had originally planned on, and I wouldn't have been able to afford any of this without your help. The kind words of encouragement and constant prayers have lifted my spirits up more than ever. It makes me so emotional to think about how many of you have been following my story and praying for me over the years. And I know this because of everyone telling me how much I deserve this chance to finally get the answers I've been longing for. It is like you have all been waiting along with me.
Keep checking back for updates while I am in Maryland. I will do my best to post daily on here and/or Facebook.
Cheers!
-Michelle
Wednesday, January 7, 2015
9:49pm
I cannot express how excited I am for 2015, but I'm going to try.
Right after Christmas, I came down with the flu. I was so sick last week. On Tuesday, I couldn't even get out of bed. I had a fever that lasted all day, and didn't break until 11:30 that night. I can honestly say I have never felt that sick before. Chemo comes pretty close if I recall a few memories. I was in bed for a week, which was probably a good thing because I got a stress fracture in my foot from getting the house all cleaned up and ready for family to come over on Christmas and Christmas Eve. Keeping off of that foot made it heal a whole lot faster. I'm much better now. I still have a little congestion left.
If you follow me on Facebook, you will have noticed that the past three months have been a whirlwind of problems for me. At the end of September I got the results of my annual body scans, which showed growth in the residual brain tumor. Since then, I have seen a handful of new doctors; none of which helped me at all or gave me any hope. Each doctor said something completely different about the tumor: it grew, it didn't grow, it's stable, there's fluid, and "I don't even see a tumor." -__- Yea, that last one made me laugh. I couldn't get any of them to agree on what was wrong. The double vision that started at the end of the summer is now in full force. I have to wear glasses with a prism to help my eyes focus. It's called 6th Nerve Palsy, but nobody knows why this is happening to me yet again or if it's going to be permanent. This occurred at the beginning of the year of my first diagnosis in 2005. I only had it for four months back then. I have definitely surpassed four months this time.
At the end of October/beginning of November, I was able to use my miles to fly to Fairbanks, Alaska to visit my best friend and Godson. It felt so good to get away. While I was there I decided to do a bit of my own research. I had heard there was this place in Maryland that work with patients similar to me. What I found was incredible and has set me on the path I am on today. I found forums with so many patients' stories relating to this disease. I was told back in 2006 that I was the only one in the world with this cancer. I still don't really know what they call it or much about it, and it has been nine years. It started with a Glomus Jugulare Tumor, and then they found over 30 tumors down my spine, ribs, and femurs. It's now referred to as some kind of Paraganglioma. Even with these two names, my family and I have been given very little information over the years.
I ended up finding a Facebook group with 1400 people in it, all being touched by this disease. I posted a short paragraph about my story, and got over 100 responses in a couple of days. Most of them wanted to let me know that I am not alone. And the majority told me to get my butt to NIH in Maryland to see this specific doctor who specializes in Paragangliomas. I got some contact information and made an inquiry. It took two months, but on January 2, I finally got the call from the National Institutes of Health (NIH). They want me to fly out at the end of the month for 10 days of testing. If they see what they like in the tests, they might put me in a study for further research. Everything is covered except airfare and meals. Getting this phone call has given me the boost I needed. I already feel loads of stress leaving my body. This is the miracle I have been waiting for for nine years. I can't wait to get out there and learn all about this cancer. I'm excited to share all the information with my family and friends who have been kept in the dark all this time as well.
This is the best start to 2015. This is my year. Nothing is going to hold me back from my hopes and dreams. God has blessed me incredibly. Like I said, airfare and meals will not be covered by the institution. I am already in debt and have to pay for tons of medical bills on a monthly basis. So if you have been touched by my story over the years or just recently and would like to support me in making this dream come true, you can DONATE on the Home page of my website. www.michellelynneford.weebly.com. $5 and $10 donations can add up quick, so if that's all you can give, I am truly grateful for your help.
Thank you for being apart of this journey with me.
God Bless,
Michelle
I cannot express how excited I am for 2015, but I'm going to try.
Right after Christmas, I came down with the flu. I was so sick last week. On Tuesday, I couldn't even get out of bed. I had a fever that lasted all day, and didn't break until 11:30 that night. I can honestly say I have never felt that sick before. Chemo comes pretty close if I recall a few memories. I was in bed for a week, which was probably a good thing because I got a stress fracture in my foot from getting the house all cleaned up and ready for family to come over on Christmas and Christmas Eve. Keeping off of that foot made it heal a whole lot faster. I'm much better now. I still have a little congestion left.
If you follow me on Facebook, you will have noticed that the past three months have been a whirlwind of problems for me. At the end of September I got the results of my annual body scans, which showed growth in the residual brain tumor. Since then, I have seen a handful of new doctors; none of which helped me at all or gave me any hope. Each doctor said something completely different about the tumor: it grew, it didn't grow, it's stable, there's fluid, and "I don't even see a tumor." -__- Yea, that last one made me laugh. I couldn't get any of them to agree on what was wrong. The double vision that started at the end of the summer is now in full force. I have to wear glasses with a prism to help my eyes focus. It's called 6th Nerve Palsy, but nobody knows why this is happening to me yet again or if it's going to be permanent. This occurred at the beginning of the year of my first diagnosis in 2005. I only had it for four months back then. I have definitely surpassed four months this time.
At the end of October/beginning of November, I was able to use my miles to fly to Fairbanks, Alaska to visit my best friend and Godson. It felt so good to get away. While I was there I decided to do a bit of my own research. I had heard there was this place in Maryland that work with patients similar to me. What I found was incredible and has set me on the path I am on today. I found forums with so many patients' stories relating to this disease. I was told back in 2006 that I was the only one in the world with this cancer. I still don't really know what they call it or much about it, and it has been nine years. It started with a Glomus Jugulare Tumor, and then they found over 30 tumors down my spine, ribs, and femurs. It's now referred to as some kind of Paraganglioma. Even with these two names, my family and I have been given very little information over the years.
I ended up finding a Facebook group with 1400 people in it, all being touched by this disease. I posted a short paragraph about my story, and got over 100 responses in a couple of days. Most of them wanted to let me know that I am not alone. And the majority told me to get my butt to NIH in Maryland to see this specific doctor who specializes in Paragangliomas. I got some contact information and made an inquiry. It took two months, but on January 2, I finally got the call from the National Institutes of Health (NIH). They want me to fly out at the end of the month for 10 days of testing. If they see what they like in the tests, they might put me in a study for further research. Everything is covered except airfare and meals. Getting this phone call has given me the boost I needed. I already feel loads of stress leaving my body. This is the miracle I have been waiting for for nine years. I can't wait to get out there and learn all about this cancer. I'm excited to share all the information with my family and friends who have been kept in the dark all this time as well.
This is the best start to 2015. This is my year. Nothing is going to hold me back from my hopes and dreams. God has blessed me incredibly. Like I said, airfare and meals will not be covered by the institution. I am already in debt and have to pay for tons of medical bills on a monthly basis. So if you have been touched by my story over the years or just recently and would like to support me in making this dream come true, you can DONATE on the Home page of my website. www.michellelynneford.weebly.com. $5 and $10 donations can add up quick, so if that's all you can give, I am truly grateful for your help.
Thank you for being apart of this journey with me.
God Bless,
Michelle