Huntsman Cancer Institute called me a couple of days ago. Boy do I feel intimidated to be going to such an important place. It's kind of scary.
I go there for a Phase 1 appointment which means they will see if I fit into any of their trials. The first time going could last several hours. I have no idea what I am getting myself into. None whatsoever. Maybe that's good that I don't have a clue. I go on Thursday March 3.
Saturday, February 27, 2016
Saturday, February 20, 2016
Huntsman........ And grieving
News from my oncologist!!!!
He called me on Thursday and said he had talked to a friend at Huntsman and that there was a couple of experimental studies on liver cancer that he wants me to do. He said he was optimistic about these studies. He said he had seen patients in my position being helped by these studies. He also said that he wasn't going to start me on chemo. He just wants me to start on these studies. He said that if he was in my spot that that is exactly what he would do. He said someone from Huntsman cancer institute will call me the first of next week. I am sooooooooo happy that I don't have to start chemo again!!!!! Yea!!!!!
The last two days, I have been to a viewing for a family friend who died from cancer, and the next day, a funeral for a relative who lost his battle with cancer. It has really rattled me. Both lost their lives to this terrible C word. I have spilled too many tears this weekend seeing myself in those caskets and it has been an emotional roller coaster. I am a little down and need a booster shot with some happiness in it. It's got me in a funky mood that I need to change. I don't like feeling negative like this. Tomorrow will be a better day. I just need to grieve I guess.
He called me on Thursday and said he had talked to a friend at Huntsman and that there was a couple of experimental studies on liver cancer that he wants me to do. He said he was optimistic about these studies. He said he had seen patients in my position being helped by these studies. He also said that he wasn't going to start me on chemo. He just wants me to start on these studies. He said that if he was in my spot that that is exactly what he would do. He said someone from Huntsman cancer institute will call me the first of next week. I am sooooooooo happy that I don't have to start chemo again!!!!! Yea!!!!!
The last two days, I have been to a viewing for a family friend who died from cancer, and the next day, a funeral for a relative who lost his battle with cancer. It has really rattled me. Both lost their lives to this terrible C word. I have spilled too many tears this weekend seeing myself in those caskets and it has been an emotional roller coaster. I am a little down and need a booster shot with some happiness in it. It's got me in a funky mood that I need to change. I don't like feeling negative like this. Tomorrow will be a better day. I just need to grieve I guess.
Thursday, February 11, 2016
a little miracle for me
I feel like I just got a golden ticket in my Oompa Loompa bar!!!!
I went to my oncologists office today assuming I was going to hear the same bad news I heard a few days ago and how there was nothing that could be done for me. I was prepared. But guess what? It didn't happen!!!!!!
He said that there was a medication he would like to try me on with minimal side effects. It isn't FDA approved though. And he has some friends at Huntsman Cancer Institute that know of studies on different cancers and he wants to see if a study is being done on my cancer, liver. And between the two things, he says that because I am still strong and not sickly and in pain and have a bad liver, he can try me on these medications. If I was sick, he would send me home and try to keep me comfortable as possible, end of story. But I haven't gotten sickly yet which is to my benefit.
He said he has worked with a man my age with the same cancer and in the same situation as me and he has been able to help him and it has been a year now. Wow. I was stoked!! He wasn't too concerned when I brought up how fast I felt the tumors were growing. He showed us how small they were and said if he could keep them that size and not grow any more, I could live a normal lengthy life even with those tumors and lesions. He was all about being positive and acting like this was not the horrible scenario I thought it was. He said he was going to do his homework and find out what Huntsman had and what drug to use for me and call our insurance. Wow!! I then got my port flushed in the chemotherapy room and I went home a much less stressed woman than when I came in. My life is still having miracles it seems. This was another miracle I felt. Thank you to all of you with your prayers for me. It has been the seeds of my miracles. I CANT GIVE UP!!!
I went to my oncologists office today assuming I was going to hear the same bad news I heard a few days ago and how there was nothing that could be done for me. I was prepared. But guess what? It didn't happen!!!!!!
He said that there was a medication he would like to try me on with minimal side effects. It isn't FDA approved though. And he has some friends at Huntsman Cancer Institute that know of studies on different cancers and he wants to see if a study is being done on my cancer, liver. And between the two things, he says that because I am still strong and not sickly and in pain and have a bad liver, he can try me on these medications. If I was sick, he would send me home and try to keep me comfortable as possible, end of story. But I haven't gotten sickly yet which is to my benefit.
He said he has worked with a man my age with the same cancer and in the same situation as me and he has been able to help him and it has been a year now. Wow. I was stoked!! He wasn't too concerned when I brought up how fast I felt the tumors were growing. He showed us how small they were and said if he could keep them that size and not grow any more, I could live a normal lengthy life even with those tumors and lesions. He was all about being positive and acting like this was not the horrible scenario I thought it was. He said he was going to do his homework and find out what Huntsman had and what drug to use for me and call our insurance. Wow!! I then got my port flushed in the chemotherapy room and I went home a much less stressed woman than when I came in. My life is still having miracles it seems. This was another miracle I felt. Thank you to all of you with your prayers for me. It has been the seeds of my miracles. I CANT GIVE UP!!!
Tuesday, February 9, 2016
The Beginning of the end
It is 4:00 in the morning and sleep is not possible. Yesterday was a changing day for me. A new chapter of my life.
I started the day having a CT scan in Ogden. Then I came home to wait for my radiation doctor to call and tell Kim and I the news about it and the MRI. I just haven't felt good about what I was going to hear.
Later in the day, around 4:00, 12 hours ago, we were told that I have 8 new tumors in a left quadrant of my liver. These have surfaced in the last few weeks. They have come fast. Not only that, I have two lesions in my left lung and 6 in my right lung. My doctor said that he can't do radiation to the liver tumors because I could have liver failure. And essentially, there is nothing he can do. I guess he called my regular oncologist and they talked. Between the two of them, they said that there wasn't anything more that they could do for me. I do see my regular oncologist this Thursday when I will ask about my time line. I feel in my heart that it won't be very long because the tumors are rapidly growing. The liver tumors are about a half inch each and the lesions in the lungs are about a quarter inch each. It is the beginning of the end.
We called our kids with the tearful news. How do you tell your kids something like this? And how do they respond? I then called my brothers and sister. I told each child and sibling of my love for them. Something I don't tell everyone as often as I should.
Kim and I had some tearful moments the rest of the day and evening. He called his sister and brother also. In our tender moments together, we talked about eternity. Our sealing in the temple was the beginning of our eternal family. That is the most important thing to me.
The bishop and his wife came over later in the evening and spent some time with us and I loved how he put it, that we will just be in different rooms is all. He gave us each a blessing which I was so appreciative of. Especially Kim getting one. He needed one as much as I did.
It makes me so sad to see my children sad. That is going to be hard is to watch them deal with this. And especially to see Kim grieve. To see the tears run down his cheeks is difficult for me. But like he keeps telling me, we need to get our heads above the clouds and look at this. Look at the big picture. We know when we come to earth, at some point, we will die. It's the plan.
Anyone reading this blog, I want you to know that I have a testimony in my heart. I know that Christ is real and that my Father in Heaven knows exactly what I am feeling and my family is feeling and he is comforting Kim and I at this time. I have been praying that he will comfort my children also.
I am not so good with words, but I have tried to write somewhat that is in my heart.
I started the day having a CT scan in Ogden. Then I came home to wait for my radiation doctor to call and tell Kim and I the news about it and the MRI. I just haven't felt good about what I was going to hear.
Later in the day, around 4:00, 12 hours ago, we were told that I have 8 new tumors in a left quadrant of my liver. These have surfaced in the last few weeks. They have come fast. Not only that, I have two lesions in my left lung and 6 in my right lung. My doctor said that he can't do radiation to the liver tumors because I could have liver failure. And essentially, there is nothing he can do. I guess he called my regular oncologist and they talked. Between the two of them, they said that there wasn't anything more that they could do for me. I do see my regular oncologist this Thursday when I will ask about my time line. I feel in my heart that it won't be very long because the tumors are rapidly growing. The liver tumors are about a half inch each and the lesions in the lungs are about a quarter inch each. It is the beginning of the end.
We called our kids with the tearful news. How do you tell your kids something like this? And how do they respond? I then called my brothers and sister. I told each child and sibling of my love for them. Something I don't tell everyone as often as I should.
Kim and I had some tearful moments the rest of the day and evening. He called his sister and brother also. In our tender moments together, we talked about eternity. Our sealing in the temple was the beginning of our eternal family. That is the most important thing to me.
The bishop and his wife came over later in the evening and spent some time with us and I loved how he put it, that we will just be in different rooms is all. He gave us each a blessing which I was so appreciative of. Especially Kim getting one. He needed one as much as I did.
It makes me so sad to see my children sad. That is going to be hard is to watch them deal with this. And especially to see Kim grieve. To see the tears run down his cheeks is difficult for me. But like he keeps telling me, we need to get our heads above the clouds and look at this. Look at the big picture. We know when we come to earth, at some point, we will die. It's the plan.
Anyone reading this blog, I want you to know that I have a testimony in my heart. I know that Christ is real and that my Father in Heaven knows exactly what I am feeling and my family is feeling and he is comforting Kim and I at this time. I have been praying that he will comfort my children also.
I am not so good with words, but I have tried to write somewhat that is in my heart.
Wednesday, February 3, 2016
MRI not read yet. More tumors. Black tumors
I need to write a little about my MRI and doctor appointment yesterday, since everyone on Facebook knew I was going to find out how well the radiation worked. The problem is, is that after we left St. Marks getting the MRI, we went to my doctors office to have him read the MRI and the radiologist hadn't sent the report yet. So my doctor tried to decipher what he thought he could see. What he did see was that the radiation had worked good on the tumors and there were a lot of black ones. This is good. In the left part of my liver, in December there was three dots. Those three dots are now small tumors. This is not good. There is also a spot on my lung that hasn't been there before. He wants me to have a CT scan to get a picture of the whole lung so we can see what is going on. After the CT scan, he will call me about both the MRI and CT. So...... I play the waiting game some more. I do that a lot it seems. That's all I have to report right now.
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