Here's the link to the video I watched up at Huntsman on the Stereotactic Body Radiation Therapy (SBRT).
http://www.abc4.com/news/local/story.aspx?content_id=D8D008E2-E87A-4326-A78A-BDBF42A54D60&gsa=true
Thursday, September 25, 2008
Hope
So, I wasn't sure if I should share or not what happened yesterday. Not sure if it false hope that was instilled or something that can really be done. I went to an appointment, yes another one, up at Huntsman for a follow up with my radiation oncologist Dr. Hitchcock. She said that I am healing well and everything looks good. She was glad I put some weight back on, and said I was too skinny before. She told me about something they are doing at Huntsman and only a few other places across the country. It is called Stereotactic Body Radiation Therapy (SBRT). They can do pinpoint radiation right on a tumor like the ones inside my lung. It would only take 3 treatments in a week to get rid of a tumor! How crazy is that? Also, the tumor in my rib, they could use electron radiation on that for 2-3 weeks and have it gone. Sounds too good to be true and like a quick fix. The only problem with that is we need to get the cancer out of my bloodstream first or it will keep going and we'll keep doing radiation on spots. Dr. Hitchcock recommended doing a therapy first and maybe reconstruction and then to talk to her about it. I emailed myself the video of it that they showed me up there. It was a video clip of the news talking about it. I'll see if I can post it on here from my email. I am not that technologically advanced yet.
Tonight, Dr. Bentz finally called. He was out of town all week. I was so glad to hear a familiar voice from Huntsman as he is my rock of a doctor. He was the first doctor I saw up there (even though I have a team of doctors). I needed his opinion about my decision on my next therapy as I have been given a big decision to make. I feel that he knows my whole situation and what I am facing. After much discussion about all my options and talking from a spiritual perspective, he left it up to me. He heavily warned me about how hard the Interlukin II will be. Obviously pretty rough because of the stay in the ICU. I felt much better after talking to him.
Tonight, Dr. Bentz finally called. He was out of town all week. I was so glad to hear a familiar voice from Huntsman as he is my rock of a doctor. He was the first doctor I saw up there (even though I have a team of doctors). I needed his opinion about my decision on my next therapy as I have been given a big decision to make. I feel that he knows my whole situation and what I am facing. After much discussion about all my options and talking from a spiritual perspective, he left it up to me. He heavily warned me about how hard the Interlukin II will be. Obviously pretty rough because of the stay in the ICU. I felt much better after talking to him.
Wednesday, September 24, 2008
Doctor's Appointment
So, yesterday I went up to Huntsman to meet with my reconstruction dr, Dr. Hunt. I brought up our theory about the spot by my rib. He thought it was worth checking into. We did two needle biopsies. The first was superficial, so they did it again even deeper. OUCH! I think he hit a nerve when Dr. Layfield did it! It still hurts this morning. They both came back looking like scar tissue. I will get the final on that probably tomorrow. So, Dr. Hunt decided to pull up my PET scan from a couple months ago and look into it. He came back and told me there was muscle between the spot on my rib and the scar tissue from the tumor five years ago. Not related at all. So our theory is now out the window and I am sitting in the exact same position I was anyways.
While I was being curious, I asked if he could get the results of my CT scan from Friday. (I wasn't supposed to get results till next Wed with Dr. Akereley) He pulled it up and started reading it. He said they now found 4 new spots in my right lung all 5mm or smaller. The PET scan only showed one 3.5mm 7 weeks earlier. Man that spread fast! Am I getting scared yet, oh yeah. So, after telling Justin, my parents and family (not everyone as it is hard to tell) I went for a girls night with some high school friends!
I desperately needed to get away and not think about it. But on the way home, it was quiet and of course that's when you start to think about things. I got about 5 minutes from home and called Justin and told him I needed a priesthood blessing. We both ended up getting one and were very comforted in our time of despair. I was losing faith fast up till the blessing. We had a long discussion about trials before hand. Let's just say that I now know that the Lord is aware of what I am going through. I know He is always there. We were both made some pretty strong promises and had all doubts dispelled. We were told that angels are around us and keeping doubts out of this house. The spirit was sooo strong. There was no denying it. It's been a while since I've had a blessing. It feels like I've done everything else I can think of. We went to the temple on Saturday night and I fasted two meals on Sunday just trying to get an answer on what I am supposed to do.
To me it is clear now. My choice is pretty much made up, unless my doc tries to talk me out of it, but I feel that I will do the Interlukin II. The one with the most hopital time, but the best outcome.
It's crazy how your perspectives change really quickly. Yesterday morning I was thinking maybe this cancer wasn't as bad as we were thinking it is, and now it's all of a sudden worse that we thought. I can't help but think back to one of my first appointments up at Huntsman with Dr. Bentz. He said the first place the cancer would most likely go if it spread would be to my lungs. Of course we did a chest CT then and it came back clear.
I am just thinking about how precious life is and wondering how much time I will have with my babies. They are everything to me. I will NEVER give up and stop fighting. But if I am playing tug of war with God, we all know who wins. If it's my time, there's nothing I can do, but I will FIGHT as long as it takes!!! I hope it says a lot about my fight by subjecting myself to 7-10 days in the hospital at a time. I am still not sure of how I will be feeling when I will be there. I will let you know how my appointment goes next week when we decide when and where and all the info on my next step of treatments. Until then...
While I was being curious, I asked if he could get the results of my CT scan from Friday. (I wasn't supposed to get results till next Wed with Dr. Akereley) He pulled it up and started reading it. He said they now found 4 new spots in my right lung all 5mm or smaller. The PET scan only showed one 3.5mm 7 weeks earlier. Man that spread fast! Am I getting scared yet, oh yeah. So, after telling Justin, my parents and family (not everyone as it is hard to tell) I went for a girls night with some high school friends!
I desperately needed to get away and not think about it. But on the way home, it was quiet and of course that's when you start to think about things. I got about 5 minutes from home and called Justin and told him I needed a priesthood blessing. We both ended up getting one and were very comforted in our time of despair. I was losing faith fast up till the blessing. We had a long discussion about trials before hand. Let's just say that I now know that the Lord is aware of what I am going through. I know He is always there. We were both made some pretty strong promises and had all doubts dispelled. We were told that angels are around us and keeping doubts out of this house. The spirit was sooo strong. There was no denying it. It's been a while since I've had a blessing. It feels like I've done everything else I can think of. We went to the temple on Saturday night and I fasted two meals on Sunday just trying to get an answer on what I am supposed to do.
To me it is clear now. My choice is pretty much made up, unless my doc tries to talk me out of it, but I feel that I will do the Interlukin II. The one with the most hopital time, but the best outcome.
It's crazy how your perspectives change really quickly. Yesterday morning I was thinking maybe this cancer wasn't as bad as we were thinking it is, and now it's all of a sudden worse that we thought. I can't help but think back to one of my first appointments up at Huntsman with Dr. Bentz. He said the first place the cancer would most likely go if it spread would be to my lungs. Of course we did a chest CT then and it came back clear.
I am just thinking about how precious life is and wondering how much time I will have with my babies. They are everything to me. I will NEVER give up and stop fighting. But if I am playing tug of war with God, we all know who wins. If it's my time, there's nothing I can do, but I will FIGHT as long as it takes!!! I hope it says a lot about my fight by subjecting myself to 7-10 days in the hospital at a time. I am still not sure of how I will be feeling when I will be there. I will let you know how my appointment goes next week when we decide when and where and all the info on my next step of treatments. Until then...
Monday, September 22, 2008
Awaiting a Phone Call
I am not sure what to expect, but Justin and I have a theory I want to run by Dr. Bentz before I make any decisions with Dr. Akereley. I am awaiting a phone call from him as he is out of town.
Our theory is this. Nine years ago I had a mole removed right under my jawbone on my left side. Cancer showed up two years ago in the same area. I had a tumor (benign) removed from the middle of my back 5 years ago and now I have another tumor there (supposedly cancer). Is there any chance this isn't coincidence? We think not. We want to do a biopsy to hopefully prove that this hasn't metastasized. We are willing to be proven wrong and be in exactly the same position they say I am in. So, it is not a risk to us to do this, right? Dr. Akereley saw the tumor in my back and immediately assumed it was cancer spread through the bloodstream. I'm not so sure that is the case. I don't think I will rest easy until I know.
I know it might look like we are grasping for straws here, but I need to know this if I am going to go through grueling and possibly life threatening treatments!
On a somewhat lighter note, tonight we took the kids to Brooklyn's school for the Fair they had to raise money for the school. On our way, Wyatt stepped in front of the stroller and ended up tripping because the wheel of the stroller hit his foot. He fell flat on his face and scraped his forhead, nose, and upper lip. Poor thing, he hit really hard because his hands were full and didn't get a chance to catch himself. It looked like it hurt really bad. He's a trooper, but I know it is hurting him. Not enough to turn around and go home. As long as we kept him busy winning candy and toys, he forgot about it. Brooklyn and Wyatt ended up with cotton candy, candy, and cupcakes. Great night for the kids. They were on a sugar high though!
Our theory is this. Nine years ago I had a mole removed right under my jawbone on my left side. Cancer showed up two years ago in the same area. I had a tumor (benign) removed from the middle of my back 5 years ago and now I have another tumor there (supposedly cancer). Is there any chance this isn't coincidence? We think not. We want to do a biopsy to hopefully prove that this hasn't metastasized. We are willing to be proven wrong and be in exactly the same position they say I am in. So, it is not a risk to us to do this, right? Dr. Akereley saw the tumor in my back and immediately assumed it was cancer spread through the bloodstream. I'm not so sure that is the case. I don't think I will rest easy until I know.
I know it might look like we are grasping for straws here, but I need to know this if I am going to go through grueling and possibly life threatening treatments!
On a somewhat lighter note, tonight we took the kids to Brooklyn's school for the Fair they had to raise money for the school. On our way, Wyatt stepped in front of the stroller and ended up tripping because the wheel of the stroller hit his foot. He fell flat on his face and scraped his forhead, nose, and upper lip. Poor thing, he hit really hard because his hands were full and didn't get a chance to catch himself. It looked like it hurt really bad. He's a trooper, but I know it is hurting him. Not enough to turn around and go home. As long as we kept him busy winning candy and toys, he forgot about it. Brooklyn and Wyatt ended up with cotton candy, candy, and cupcakes. Great night for the kids. They were on a sugar high though!
Friday, September 19, 2008
The response has been huge!
I never imagined that by posting my last blog that I would get so many people concerned. That was not my intention at all! I have received so many emails and comments and well wishes it is overwhelming! I am so grateful for everyone's concerns and prayers in my behalf. This will be a tough decision but the best one will be made! Love to all
Thursday, September 18, 2008
Tough Decisions!
As many know, I am fighting cancer and am now stuck in a bit of a tight spot. I tried to qualify for a clinical trial back east, but my HLA blood typing test (tissue typing) came back as the wrong one for the trial or any of their trials for that matter. I haven't posted anything for a while, because I myself have been waiting to figure out what I am going to do next.
Yesterday I met with Dr. Akereley at the Huntsman Cancer Institute. He gave me a few options.
The first being the most effective is the High Dose of Interlukin II, which would add about 5 years onto my life. This would include a week in the ICU in the hospital, a week out, another week in, four weeks out, and another week in. They inject foreign genes into my body that are supposed to fight off the cancer. In doing this, most of my major body organs would be almost shut down for that whole week and then after a few days I would be pretty much back to normal. Then obviously do it 2 more times. Sounds really grueling and out of a scale of 1-4, 4 being the worst side effects possible, my doctor gave it a 4+!
Second he gave me the option of Biochemotherapy. This would include a lower dose of the Interlukin II, Interferon, and a pill (I can't read his handwriting-not sure what the drug is called. Starts with a Tem-something). This would add about 4-5 years and the side effects are rated a 3+. This would entail being in the hospital for the first week, 2nd week would be 3 self injections at home, and have weeks 3 & 4 off. I would repeat this hopefully if tolerable, the rest of my life. He said most patients last 4-6 months and take a break from the side effects and start up again.
Third is something called DTIC (an IV given every 3 weeks) and the same pill I couldn't read his handwriting as before. This would add one year and side effects are a 1+.
Fourth is a clinical trial that would go one of two ways. The computer randomly picks which one you get. Arm one includes taking pills at home. Arm two includes taking one pill at home and a weekly IV. The side effects aren't rated as this is a clinical trial and also the years of life added are unknown. Looking throught the side effects it sounds really similar to the side effects of chemo. Not fun. The drugs in this study are ones they are already using for kidney cancer and leukemia. They are studying this as a secondary cure for melanoma since all three cancers are similar in that they are immune system cancers. The only way I would be able to do this trial is if I do it before any of the other three options. Otherwise I will NEVER be able to do it. The risks seem high and I am still not sure if I would do this first or not at all.
So as you see my decision is a tough one. I am getting a CT scan tomorrow at Huntsman to look at the tumor on my rib to see if it is measurable (big enough for them to see if it shrinks with treatment) for the clinical trial. The only other tumor I had was on my neck and suddenly disappeared! Yay.
I was told yesterday that now that my cancer is moving in my bloodstream it decreases my chances for survival. So I need to act fast on one of these. I have two weeks to decide what I am going to do. Prayers would help!
The reason for this post is to be informal for all those who keep asking what I am going to do next. As you can see this will not be easy. I know there will be a lot of opinions and questions. You can email me any concerns you have. I love you all! Thanks for all of your prayers and putting my name in the temple. All of your support has made all the difference in the world.
Yesterday I met with Dr. Akereley at the Huntsman Cancer Institute. He gave me a few options.
The first being the most effective is the High Dose of Interlukin II, which would add about 5 years onto my life. This would include a week in the ICU in the hospital, a week out, another week in, four weeks out, and another week in. They inject foreign genes into my body that are supposed to fight off the cancer. In doing this, most of my major body organs would be almost shut down for that whole week and then after a few days I would be pretty much back to normal. Then obviously do it 2 more times. Sounds really grueling and out of a scale of 1-4, 4 being the worst side effects possible, my doctor gave it a 4+!
Second he gave me the option of Biochemotherapy. This would include a lower dose of the Interlukin II, Interferon, and a pill (I can't read his handwriting-not sure what the drug is called. Starts with a Tem-something). This would add about 4-5 years and the side effects are rated a 3+. This would entail being in the hospital for the first week, 2nd week would be 3 self injections at home, and have weeks 3 & 4 off. I would repeat this hopefully if tolerable, the rest of my life. He said most patients last 4-6 months and take a break from the side effects and start up again.
Third is something called DTIC (an IV given every 3 weeks) and the same pill I couldn't read his handwriting as before. This would add one year and side effects are a 1+.
Fourth is a clinical trial that would go one of two ways. The computer randomly picks which one you get. Arm one includes taking pills at home. Arm two includes taking one pill at home and a weekly IV. The side effects aren't rated as this is a clinical trial and also the years of life added are unknown. Looking throught the side effects it sounds really similar to the side effects of chemo. Not fun. The drugs in this study are ones they are already using for kidney cancer and leukemia. They are studying this as a secondary cure for melanoma since all three cancers are similar in that they are immune system cancers. The only way I would be able to do this trial is if I do it before any of the other three options. Otherwise I will NEVER be able to do it. The risks seem high and I am still not sure if I would do this first or not at all.
So as you see my decision is a tough one. I am getting a CT scan tomorrow at Huntsman to look at the tumor on my rib to see if it is measurable (big enough for them to see if it shrinks with treatment) for the clinical trial. The only other tumor I had was on my neck and suddenly disappeared! Yay.
I was told yesterday that now that my cancer is moving in my bloodstream it decreases my chances for survival. So I need to act fast on one of these. I have two weeks to decide what I am going to do. Prayers would help!
The reason for this post is to be informal for all those who keep asking what I am going to do next. As you can see this will not be easy. I know there will be a lot of opinions and questions. You can email me any concerns you have. I love you all! Thanks for all of your prayers and putting my name in the temple. All of your support has made all the difference in the world.
California Trip with Dave and Patty!
We drove down in the motorhome (or should I say Dave and Justin drove)
We also went to the Ucla Tennessee game and had a blast
I forgot to take the camera to the game
I hadn't eaten sugar in two weeks! I crumbled and ate a couple bites!
Jenny got a swan! Some were walking out with full on mermaids!
They put Patty's dinner in a foil crab!
We had dinner at Gladstones right on the beach and even had
fireworks right after. They shot them off a barge in the ocean!
fireworks right after. They shot them off a barge in the ocean!
Patty, Karen, John, and Justin
(Justin looks so happy!)
(Justin looks so happy!)
Patty (left) and Karen at breakfast
Yeah, not ours but we wished! He did let us drive it though!
Thought I would be better at this!
I know I am brave for posting without makeup on!
Brooklyn didn't want water in her eyes
Brooklyn got up on ski's for about 5 seconds! I was so proud!
Justin loves to Wakeboard. Check out the backdrop
Here are some pics from Lake Powell in August!
Subscribe to:
Posts (Atom)