Wednesday was my last day of radiation. It was a bittersweet experience. I cried when I left. The people there are so friendly and encouraging. They always have smiles on their faces and open arms. I don't know if it is for everyone or for a select few. I have been with them for an overall total of 3 months and 3 weeks. I've gotten to know them and they are my friends!! I try to stop by and visit them whenever I have an appointment with my other doctors and I will continue doing that but it is always hit and miss who I get to see.
I brought them cookies and gave them a card:
And wrote on it with all the radiation you all have given me I might end up growing more arms and legs. We joke around!
I also met a couple of really wonderful ladies Beverly, Jackie and Kathryn who all have wonderfully beautiful spirits. I am sad I am not going to have the opportunity to see them everyday and talk with them but I will always remember them in my prayers along with so many others! I cried when I left... I'm such a sap :( but I will continue visiting them every time I go visit my other doctors!
Monday, March 28, 2011
DC
I was given permission from my doctors to make the trip out to DC for the National Science Foundation conference. I went last year and present my research and co-lead a discussion on incorporating research into the K-12 education system. I had submitted abstracts again for this year but ended up being VERY thankful that they were not accepted.
Cherelle and I went down to Boulder to stay with her parents on Thursday night because our flight left at 6:00 in the morning. That evening we had dinner at her ?college ministers? house and my cousin Elliot was able to make it over after his training. It was absolutely great having the opportunity to chat with him! He lives an hour away and I probably have only seen him once a semester and he is graduating this semester! Totally going down for his graduation!
Friday morning Cherelle and I left for the airport and were shocked to see that everyone was already there. Cherelle had been amazing and had worked with the airline for me to have a wheelchair... which meant we got to bypass the security line and we got to pre-board :) We made it to Baltimore and then had to do lots of walking and bus/train riding to make it to DC and then much more walking to make it to the conference.
Saturday morning I woke up with a massive migraine and could not force myself to get up and moving. I felt so horrible, I wanted to be at the conference but physically couldn't do it... I had worked myself too hard the day before. Finally around 2:30 I was feeling much better and was all ready to go to the conference. I was on my way out the door when Cherelle and Kate showed up and said let's go sight-see. I had missed the conference for that day :( Turns out our team had done really well, we got awarded for our progress report and Kate was given an award for preparing the best GK-12 website! She is so talented and you should hire her for all your website designs (shameless promotion). I was also very sad that the keynote speaker discussed geckos feet and how we can use their feet "technology" in the scientific community, a lesson which I had come up previously for my high school students. So of course we ended up going sight seeing, this time taking cabs everywhere!
Then we went to the museum of nature and science we were all on the same page with what we wanted to see in the short time we had... the rocks and the dinosaurs! The three of us were inspired by the gems and all the different forms and colorations they could take on that we started discussing a lesson for our students! That night we all met up together and ate at a very yummy ?chineese? food restaurant. I even tried jelly fish, not too bad actually. We had so much food and variety to choose from!
The next day I was feeling well and was up and ready for the conference! I went over to have the continental breakfast and the group was told by our boss to go out and sightsee, so we did! Cherelle, Kate and I went to the Lincoln memorial and got our pictures with Honest Abe. We had someone take a picture of the three of us in front of him.... they cut of his head.... really?!?!?! We took Kate back to the hotel so that they could catch their flight. Cherelle and I went back out to have dinner on the Potomac river I believe it was. it was an absolutely gorgeous day. We stopped by the White House and took a couple of pictures, there were snipers standing on the roof, the president very well could have been there that day. We then went to the museum of American history and looked around there for awhile. That night for dinner we sought out a restaurant where I could get a lobster roll, and MMMMMM it was delicious!
Cherelle and myself had stayed an extra day so that we could do some more sight seeing, well once again I couldn't make myself get out of bed. So Cherelle went out exploring without me :( She got to see the supreme court and she went to the postal museum and got to go shopping and found some pretty cool stuff... I was so jealous.... but I have to look out for my health first and I needed to stay in and rest.
We left that afternoon and we made it back safely and had radiation the next day. I am so thankful for Cherelle and Kate and their knowledge of traveling and sense of direction. Couldn't have done it myself! They are great travel buddies!
Cherelle and I went down to Boulder to stay with her parents on Thursday night because our flight left at 6:00 in the morning. That evening we had dinner at her ?college ministers? house and my cousin Elliot was able to make it over after his training. It was absolutely great having the opportunity to chat with him! He lives an hour away and I probably have only seen him once a semester and he is graduating this semester! Totally going down for his graduation!
Friday morning Cherelle and I left for the airport and were shocked to see that everyone was already there. Cherelle had been amazing and had worked with the airline for me to have a wheelchair... which meant we got to bypass the security line and we got to pre-board :) We made it to Baltimore and then had to do lots of walking and bus/train riding to make it to DC and then much more walking to make it to the conference.
Saturday morning I woke up with a massive migraine and could not force myself to get up and moving. I felt so horrible, I wanted to be at the conference but physically couldn't do it... I had worked myself too hard the day before. Finally around 2:30 I was feeling much better and was all ready to go to the conference. I was on my way out the door when Cherelle and Kate showed up and said let's go sight-see. I had missed the conference for that day :( Turns out our team had done really well, we got awarded for our progress report and Kate was given an award for preparing the best GK-12 website! She is so talented and you should hire her for all your website designs (shameless promotion). I was also very sad that the keynote speaker discussed geckos feet and how we can use their feet "technology" in the scientific community, a lesson which I had come up previously for my high school students. So of course we ended up going sight seeing, this time taking cabs everywhere!
Then we went to the museum of nature and science we were all on the same page with what we wanted to see in the short time we had... the rocks and the dinosaurs! The three of us were inspired by the gems and all the different forms and colorations they could take on that we started discussing a lesson for our students! That night we all met up together and ate at a very yummy ?chineese? food restaurant. I even tried jelly fish, not too bad actually. We had so much food and variety to choose from!
The next day I was feeling well and was up and ready for the conference! I went over to have the continental breakfast and the group was told by our boss to go out and sightsee, so we did! Cherelle, Kate and I went to the Lincoln memorial and got our pictures with Honest Abe. We had someone take a picture of the three of us in front of him.... they cut of his head.... really?!?!?! We took Kate back to the hotel so that they could catch their flight. Cherelle and I went back out to have dinner on the Potomac river I believe it was. it was an absolutely gorgeous day. We stopped by the White House and took a couple of pictures, there were snipers standing on the roof, the president very well could have been there that day. We then went to the museum of American history and looked around there for awhile. That night for dinner we sought out a restaurant where I could get a lobster roll, and MMMMMM it was delicious!
Cherelle and myself had stayed an extra day so that we could do some more sight seeing, well once again I couldn't make myself get out of bed. So Cherelle went out exploring without me :( She got to see the supreme court and she went to the postal museum and got to go shopping and found some pretty cool stuff... I was so jealous.... but I have to look out for my health first and I needed to stay in and rest.
We left that afternoon and we made it back safely and had radiation the next day. I am so thankful for Cherelle and Kate and their knowledge of traveling and sense of direction. Couldn't have done it myself! They are great travel buddies!
Tuesday, March 15, 2011
I can’t believe I forgot to put this in
Monday evening the elders met with me and my mom to have a prayer session. I updated all of them on the results of the MRI and what the plan was for treatment. They were so encouraging and I felt the Spirit of God in the room with us.
There have been other times when I have met with the elders and we would pray but this time it was different. The other times I was a lot more emotional, sad and scared for what the future held. This time I was more at peace of course I’m sill emotional and slightly scared but I feel much more at peace. I know that God is holding my future in His hands and He has amazing plans for me!! I know that He is daily working in my life refining me making me into His beautiful creation.
Do I want to have this disease, no. Am I thankful that I have this disease, yes. I know that might be hard for people to comprehend and even hard for them to understand. In my opinion one can not go through something like this and not come out of it changed, changed for the bad or changed for the good. I feel like this experience and struggle has changed me for the better.
1) My relationship with God has gotten so much stronger. I thought God and I were pretty tight when I was in college, boy was I wrong! I am so thankful that He keeps teaching me and showing me new things through everything I’ve experienced and been through in the last few years.
2) This has brought my family closer together. We still have our struggles and times when we don’t get along and we still have problems communicating. But we love each other deeply and are working towards learning to understand each other better.
3) I realize more how important relationships are. I know I have been very bad at calling/texting/emailing back but to my friends I love you all so very much and miss all of the time we used to spend together. But please know that you all are always in my heart and I cherish all of our memories together!
4) I’m learning more of what is important in my life, I can’t speak for anyone else’s life. I’m figuring out what kind of impression I want to make on people, even if I only have a few seconds with them.
5) I have realized the hope that people have for themselves and for anyone who is going through these kinds of difficult times. Over the past 3 years of treatment I have not once experienced someone who didn’t have hope, regardless of what their doctor had told them. I have been spiritually encouraged by several of the other patients and caregivers. So many of them believe in a higher power and are not afraid to express it.
Jer 17:7 "But blessed is the man who trusts in the Lord, whose confidence is in Him"
Saturday, March 5, 2011
Family and Treatments
I'm not sure what all I have mentioned so far but the results of my MRI were not that great. For the first time I could actually tell that something wasn't right and could tell what was suppose to be there and what wasn't. I was very scared but I understood why I was having as many problems as I was. Being very lethargic and having lots of migraines. Things were randomly coming back in my brain and some in my cervical spinal cord and possibly in other areas of my spinal cord : / My doctor was trying not to cry, I could definitely see the tears welling up. She told me that this was beyond her expertiece and wanted to get in touch with the experts in the field to find out their suggestions.
After finding out this very sad news regarding the MRI results I decided I wanted my family to come out to be there when my doctors discussed my options. I had always gone out to visit them when I get this kind of news but based on the reaction from my doctor I felt it was time for them to come out to me and be there to hear what the doctor said.
My family (Mom, Dad, Rachel, Michael, my nephews and Stephanie) drove out on Wednesday and stayed in Denver that evening. I met them in Denver Thursday with Jana. Surprisingly we all stayed fairly calm throughout the discussion, which lasted over an hour I'm sure maybe even close to two hours. There were lots of things we discussed about possible treatments, even alternative treatments. I've (along with my family) have decided that I would stay out in Colorado to continue treatment. My mom has also decided to stay out here with me for awhile, not sure how long but at least for awhile.
After the doctors appointment we went out to the Old Spaghetti Factory with Wanda and Stacey Smith and their boys. Wanda had taken care of my nephews while we were talking with Dr. Dameck. They went over to the children's hospital and played over there. It was such a beautiful day. The OSF was so much fun I love the fact that they have balloon makers around. All the boys were so excited! Colton had a sword made and then when Triston had his turn he said that he wanted a sword that was bigger than Colton's, it was so funny, and he got just that!
For the weekend we stayed at the house that is owned by the church where my sister attends (Tri-Lakes). It didn't have as many rooms as I thought it did but it worked out well, 3 rooms and 6 beds for a total of 7 adults and 3 kids. All the boys in one room and the girls separated into the other two. It was nice that we could all be together for the weekend even though it did get kinda stressful on occassion. It was also very nice because various members of the church had prepared food for us along with stocking the refrigerator. There was LOTS of desserts too!
Saturday was a little more stressful, partially because there was going to be a fondue party at the house that evening for the people from the church along with us wanting to do. I wasn't feeling that great that day but I went ahead and went to garden of the gods with everyone and just chilled in the car while everyone else ran around. They all seemed amazed at how beautiful it was especially Michael, Rachel and the boys. I'm pretty sure everyone else had already seen the area at some point. I think Michael might have been the most impressed. Of course we had to make a stop at the gift shop. I didn't do much shopping but Rachel and Stephanie got some really beautiful stuff and of course my nephews picked out some really fun things!
We had some troubles when we got back to the house and ended up having a family discussion in the basement while people were arriving for the fondue party that night. It's just so hard bringing together so many people with all their expectations, opinions and agendas. Yes everyone came because I asked them to, but at the same time it was like a family vacation and then you have other people who have this as their life and still have responsibilities. It was tough but we made it through and I hope everyone is understanding each other better.
At some point we went to Five Guys Burgers and Fries, mmmm yummy! Just some advice we got two large things of fries for all of us and there was still some left over. Be cheap and share!
Monday mom and I went to meet with the radiologist. It was very interesting because I thought I had gotten the most radiation that I could but I guess I was wrong because they can and are giving me more. So I will be doing 15 treatments of brain radiation and radiation to a very small portion of my cervical spine. The circumstances aren't good but it was so great to see the radiation technologists again! They are such amazing people and such a joy to talk to! Dr. Chen said that I could still go to Washington DC. I'm hoping and praying that I am feeling even better by then!
Tuesday I had radiation and chemotherapy. The chemotherapy that I'm going to be taking are all pills. They had the lomustine for me but not the other one yet. My current insurance doesn't have enough prescription coverage so my doctor is getting in contact with the company that supplies it to get it for a reduced price. When I was on temodar I was able to get that for free which was such a blessing! Mom and I ended up staying at the infusion center and resting. My head was fuzzy and I wanted to rest so even though I just took pills and didn't do an infusion they let me stay there and rest in their reclining chairs and I watched ice age 3, it was so cute!
This week I've felt fairly decent. I want to say the radiation is already working. I haven't had really intense migraines or headaches. Although it's not that different from last time it seems much faster! We drive down, takes about an hour, and then within just a few minutes I go back to my machine they put my mask on me and then the radiation takes no more than a minute (maybe two (absolutely tops)) and then I'm done and we drive back! And then no worrying about rush hour traffic! :D
Mom and I worked on cleaning my room and the living space next to my room to get prepared for the bed that was being brought in for her. It feels so nice to have a clean room! Mom has been great with cooking and cleaning and helping out around the house. I'm so thankful for everything she is helping me with.
This morning I woke up with a migraine : ( I stayed in bed for a few extra hours and finally got out of bed around 10 but I'm feeling a ton better now!
Proverbs 3:5
Trust in the Lord with all thine heart; and lean not unto thine own understanding.
Psalms 121:1-2
I will lift up mine eyes unto the hills, from where cometh my help. My help cometh from the Lord, which made heaven and earth.
After finding out this very sad news regarding the MRI results I decided I wanted my family to come out to be there when my doctors discussed my options. I had always gone out to visit them when I get this kind of news but based on the reaction from my doctor I felt it was time for them to come out to me and be there to hear what the doctor said.
My family (Mom, Dad, Rachel, Michael, my nephews and Stephanie) drove out on Wednesday and stayed in Denver that evening. I met them in Denver Thursday with Jana. Surprisingly we all stayed fairly calm throughout the discussion, which lasted over an hour I'm sure maybe even close to two hours. There were lots of things we discussed about possible treatments, even alternative treatments. I've (along with my family) have decided that I would stay out in Colorado to continue treatment. My mom has also decided to stay out here with me for awhile, not sure how long but at least for awhile.
After the doctors appointment we went out to the Old Spaghetti Factory with Wanda and Stacey Smith and their boys. Wanda had taken care of my nephews while we were talking with Dr. Dameck. They went over to the children's hospital and played over there. It was such a beautiful day. The OSF was so much fun I love the fact that they have balloon makers around. All the boys were so excited! Colton had a sword made and then when Triston had his turn he said that he wanted a sword that was bigger than Colton's, it was so funny, and he got just that!
For the weekend we stayed at the house that is owned by the church where my sister attends (Tri-Lakes). It didn't have as many rooms as I thought it did but it worked out well, 3 rooms and 6 beds for a total of 7 adults and 3 kids. All the boys in one room and the girls separated into the other two. It was nice that we could all be together for the weekend even though it did get kinda stressful on occassion. It was also very nice because various members of the church had prepared food for us along with stocking the refrigerator. There was LOTS of desserts too!
Saturday was a little more stressful, partially because there was going to be a fondue party at the house that evening for the people from the church along with us wanting to do. I wasn't feeling that great that day but I went ahead and went to garden of the gods with everyone and just chilled in the car while everyone else ran around. They all seemed amazed at how beautiful it was especially Michael, Rachel and the boys. I'm pretty sure everyone else had already seen the area at some point. I think Michael might have been the most impressed. Of course we had to make a stop at the gift shop. I didn't do much shopping but Rachel and Stephanie got some really beautiful stuff and of course my nephews picked out some really fun things!
We had some troubles when we got back to the house and ended up having a family discussion in the basement while people were arriving for the fondue party that night. It's just so hard bringing together so many people with all their expectations, opinions and agendas. Yes everyone came because I asked them to, but at the same time it was like a family vacation and then you have other people who have this as their life and still have responsibilities. It was tough but we made it through and I hope everyone is understanding each other better.
At some point we went to Five Guys Burgers and Fries, mmmm yummy! Just some advice we got two large things of fries for all of us and there was still some left over. Be cheap and share!
Monday mom and I went to meet with the radiologist. It was very interesting because I thought I had gotten the most radiation that I could but I guess I was wrong because they can and are giving me more. So I will be doing 15 treatments of brain radiation and radiation to a very small portion of my cervical spine. The circumstances aren't good but it was so great to see the radiation technologists again! They are such amazing people and such a joy to talk to! Dr. Chen said that I could still go to Washington DC. I'm hoping and praying that I am feeling even better by then!
Tuesday I had radiation and chemotherapy. The chemotherapy that I'm going to be taking are all pills. They had the lomustine for me but not the other one yet. My current insurance doesn't have enough prescription coverage so my doctor is getting in contact with the company that supplies it to get it for a reduced price. When I was on temodar I was able to get that for free which was such a blessing! Mom and I ended up staying at the infusion center and resting. My head was fuzzy and I wanted to rest so even though I just took pills and didn't do an infusion they let me stay there and rest in their reclining chairs and I watched ice age 3, it was so cute!
This week I've felt fairly decent. I want to say the radiation is already working. I haven't had really intense migraines or headaches. Although it's not that different from last time it seems much faster! We drive down, takes about an hour, and then within just a few minutes I go back to my machine they put my mask on me and then the radiation takes no more than a minute (maybe two (absolutely tops)) and then I'm done and we drive back! And then no worrying about rush hour traffic! :D
Mom and I worked on cleaning my room and the living space next to my room to get prepared for the bed that was being brought in for her. It feels so nice to have a clean room! Mom has been great with cooking and cleaning and helping out around the house. I'm so thankful for everything she is helping me with.
This morning I woke up with a migraine : ( I stayed in bed for a few extra hours and finally got out of bed around 10 but I'm feeling a ton better now!
Proverbs 3:5
Trust in the Lord with all thine heart; and lean not unto thine own understanding.
Psalms 121:1-2
I will lift up mine eyes unto the hills, from where cometh my help. My help cometh from the Lord, which made heaven and earth.
Wednesday, March 2, 2011
More Radiation and Chemotherapy
I will write more hopefully tomorrow sometime, but for now the plan is:
brain radiation 15 days
CCNU (lomustine) every 6 weeks (pills)
EGFR inhibitor (tarceva) every day indefinitely (pills)
Started radiation yesterday along with the CCNU
My mom is here with me for the time being a great help and support!
I'm doing okay headaches and very very low on energy : /
LOVED seeing my family this past weekend!
brain radiation 15 days
CCNU (lomustine) every 6 weeks (pills)
EGFR inhibitor (tarceva) every day indefinitely (pills)
Started radiation yesterday along with the CCNU
My mom is here with me for the time being a great help and support!
I'm doing okay headaches and very very low on energy : /
LOVED seeing my family this past weekend!
Subscribe to:
Posts (Atom)