So, JoLynne and I are back in Houston. Today I finished my fifth day of chemotherapy and was discharged from the hospital. The objective was to deplete my immune system so that tomorrow, when they implant the new genetically enhanced immune system, there will be room for them to grow. Chemotherapy is not fun. It makes me tired and nauseated and this time it has given me a lot of headaches. But, if it accomplishes what they want then I am glad to suffer in order to gain the final desired result.
Tomorrow is a big day. The actual infusion really only takes a short time. From last time I remember that the injected cells had a golden color to them. Oh and they smell like some weird fruit. This dose will be much higher than what I was given last time. In January when they did this they were still trying to determine how much could be safely given. I was only the second patient so the dose I was given was very small. The result of that and other experiments has shown that the maximum dose had no safety concerns. So, this time I start at maximum dose. I like that. In addition, assuming that my tumor shrinks or even doesn't grow, they will give me another high dose every six weeks for six more times. I like that too. Last time when I was in this study my blood supply to the right side of my face was seriously damaged. Many of the major blood vessels had been destroyed by radiation. That makes it harder for the T cells to get where they are supposed to go. Part of my reconstruction in Miami involved rebuilding the blood supply to my face. Lots of fancy plumbing work. I think that should also work in my favor. But, mostly we are relying on the hand of God to direct the affairs of my health. Only He knows ultimately what the outcome will be and when I am cured, I will gladly give the credit to Him. He is in charge and for that I am eternally grateful. We are ready to celebrate "Independence from cancer" day.
Showing posts with label God. Show all posts
Showing posts with label God. Show all posts
Sunday, July 5, 2015
Friday, June 26, 2015
Packets of Spiritual Sunlight
I am long overdue to post something here. I don't know everyone that reads or follows this blog but I do know many of you. I am sorry that I have been slow in keeping you updated. Your prayers and faith in my behalf have been a great gift to me. I love and appreciate you.
Well, we fly out for Houston on Monday. Treatment will begin Tuesday and we will need to remain in the Houston area for about 3 weeks while they make sure that I don't have any adverse reactions to the treatment. We hate to be away from our children again but it is necessary.
For the longest time there was still a shadow of uncertainty about if they would allow us into the study or not. They seemed more inclined to allow us but wouldn't give us a solid answer. Finally I just had to pipe up and tell them. "Look, we don't want to whine, but we need some guidance here. Please let us know if we are going to be in the study or not." The lead investigator emailed back and said that he really needed to talk through the situation on the phone with me. We finally got together on Father's day and had a good talk.
It seems I am only the second person that this treatment has been attempted on. The first was a child and I am the first adult. They had expected that our insurance would pick up the bill for the chemotherapy and hospital stay that are involved in the study but our insurance was unwilling. The insurance saw that it was an "Investigational study" and said that our contract specifically permits them to deny payment for such treatments. The principle investigator, Dr Stephen Gottschalk, said that fighting with insurance companies was something he wasn't used to doing. His emphasis has always been on research. He had filed an appeal but didn't know how it would result. He was very concerned that we would end up having to pay something to be in the study. I told him that money wasn't our primary concern. Our concern is to find a cure. Then he told me "It might be even $3000 or more." I almost started to laugh. All this drama over that much money? I think that he has no idea how much money we have already spent in this fight. I told him that God had been very good to me in my profession and that we would have no problem finding the money to pay whatever was needed. He then said, "Then in that case lets get going. I will have the business office call you tomorrow to set up the start date." He said he had reviewed my health status and felt that there was nothing there to prevent my participation. What a lovely father's day present that was. We have spent a lot of time fretting and worrying about what we would do if we were not allowed to continue in the study.
This has been a rocky road to travel. It hasn't been easy but at the same time I pondered about what has happened to me and my family these last four years as we have faced these problems together and learned to lean upon the Lord for our support. I can honestly say that these last four years have been transformative for me personally and for my family. I am a better person because of what I have been through. My family is a better family. Even JoLynne and I, who have always had the sweetest relationship, have grown so much closer because of this. We walk every day. I wish you could listen in on our talks during those late night walks. Wow, we have some amazing discussions as we talk about how God is hearing and answering our prayers and how he is using the priesthood to bless and preserve me. Cancer is awful, but God somehow makes good things come out of bad ones.
We are still waiting for God to show us the great miracle that He has prepared. I still need to be cured. I know that I should be nervous. The cancer has progressed enough now that there is no time for us to make a mistake in our choices. We are poised at the brink of a great miracle or, frankly a certain death. I should be terrified but I'm not at all. There is a peace that has settled over both JoLynne and I. Somehow fear has vanished. It feels like God is illuminating the path before us with small beacons of light that seem to repel our fears. Richard G. Scott, one of the few apostles that I ever met in my life and had a chance to spend time with said it this way.
Well, we fly out for Houston on Monday. Treatment will begin Tuesday and we will need to remain in the Houston area for about 3 weeks while they make sure that I don't have any adverse reactions to the treatment. We hate to be away from our children again but it is necessary.
For the longest time there was still a shadow of uncertainty about if they would allow us into the study or not. They seemed more inclined to allow us but wouldn't give us a solid answer. Finally I just had to pipe up and tell them. "Look, we don't want to whine, but we need some guidance here. Please let us know if we are going to be in the study or not." The lead investigator emailed back and said that he really needed to talk through the situation on the phone with me. We finally got together on Father's day and had a good talk.
It seems I am only the second person that this treatment has been attempted on. The first was a child and I am the first adult. They had expected that our insurance would pick up the bill for the chemotherapy and hospital stay that are involved in the study but our insurance was unwilling. The insurance saw that it was an "Investigational study" and said that our contract specifically permits them to deny payment for such treatments. The principle investigator, Dr Stephen Gottschalk, said that fighting with insurance companies was something he wasn't used to doing. His emphasis has always been on research. He had filed an appeal but didn't know how it would result. He was very concerned that we would end up having to pay something to be in the study. I told him that money wasn't our primary concern. Our concern is to find a cure. Then he told me "It might be even $3000 or more." I almost started to laugh. All this drama over that much money? I think that he has no idea how much money we have already spent in this fight. I told him that God had been very good to me in my profession and that we would have no problem finding the money to pay whatever was needed. He then said, "Then in that case lets get going. I will have the business office call you tomorrow to set up the start date." He said he had reviewed my health status and felt that there was nothing there to prevent my participation. What a lovely father's day present that was. We have spent a lot of time fretting and worrying about what we would do if we were not allowed to continue in the study.
This has been a rocky road to travel. It hasn't been easy but at the same time I pondered about what has happened to me and my family these last four years as we have faced these problems together and learned to lean upon the Lord for our support. I can honestly say that these last four years have been transformative for me personally and for my family. I am a better person because of what I have been through. My family is a better family. Even JoLynne and I, who have always had the sweetest relationship, have grown so much closer because of this. We walk every day. I wish you could listen in on our talks during those late night walks. Wow, we have some amazing discussions as we talk about how God is hearing and answering our prayers and how he is using the priesthood to bless and preserve me. Cancer is awful, but God somehow makes good things come out of bad ones.
We are still waiting for God to show us the great miracle that He has prepared. I still need to be cured. I know that I should be nervous. The cancer has progressed enough now that there is no time for us to make a mistake in our choices. We are poised at the brink of a great miracle or, frankly a certain death. I should be terrified but I'm not at all. There is a peace that has settled over both JoLynne and I. Somehow fear has vanished. It feels like God is illuminating the path before us with small beacons of light that seem to repel our fears. Richard G. Scott, one of the few apostles that I ever met in my life and had a chance to spend time with said it this way.
"The Lord didn’t just deliver the faithful from their trials right away. Rather, He visited them with the assurance that He would deliver them in His own time. These assurances, to borrow the words of ElderRichard G. Scott of the Quorum of the Twelve Apostles, are like “packets of spiritual sunlight” that Heavenly Father places in our path “to brighten [our] way.”1Sometimes that assurance is all we need to persevere through trials, knowing that there will be an ultimate deliverance."We know that there are challenges yet ahead but we also know that with God's help we can meet them bravely and that all will be as it is supposed to be. What a great gift to know, beyond faith, that God is there. He is my loving Heavenly Father. He hears my prayers and cares about me personally. When I am afraid, He takes my hand. When I hurt, He feels my pain and helps me to bear it. I am in awe that the greatest being in the universe cares about me. I think that in the big picture I am not much at all but somehow God thinks I am worth His time.
Monday, July 1, 2013
Four down, one to go!
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| Pretty photogenic right? |
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| This is a High tech machine! |
Yesterday after church we drove to Wisconsin to look at the Mississippi. There is a park bench down there that we happened upon about 18 months ago that we believe had a message from God to us. We have looked but have never been able to find again. (See blog from 10/9/2011) Anyway, this time we managed to find it. The writing on the bench was faded but still legible. It says;
"It's okay to have bad day's, hold on, be strong"
Still good advice 18 months later.
This blog started out as a way to keep people who were worried up to date about my treatments. I hope that it has served that purpose well. Like many things it has grown into something somewhat unexpected. Unless you leave a comment I don't really know who is looking at this blog. I can, however, see maps of where it is being looked at. It is something that I don't fully comprehend. Most of the views are from the United States, that isn't surprising. What does surprise me is the number of people who are following from countries all over the world. From what I see I am approaching nearly 70,000 views. Many of those viewing are from Russia, Canada, Latvia, China, Germany, Spain, Denmark etc... I have traveled to many of your countries providing humanitarian service as a dentist. Perhaps some of you are following for that reason. Perhaps some of you are people I have never met. For whatever reason, I am happy to have you follow along. I hope that my experiences have in some way helped you to meet your own challenges in life. The prevailing message that I hope my blog conveys is to live with hope. For me that hope largely comes from my faith in God and from the faith and love of others who surround me.
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| The shag carpet car. |
Okay, here is the random thing we saw on Saturday. We made a wrong turn and came upon the most lovely car I have seen in a while. I'm not sure why someone would do this but it is unique. The car is completely covered in shag carpet and then has a few bones glued on to make it extra special. The question is: Would you wash your car or vacuum it?
Friday, June 14, 2013
Well, the saga continues....
We have had mostly good news lately.
After several calls, the oncologist at Mayo finally called us back. In the meantime several other parties had weighed in on my case. The radiologist at Mayo re-read my MRI and his conclusion was "One tumor with other areas impossible to differentiate" This is more consistent with what we were told by the radiologist here who said "One tumor with other areas consistent with radiation edema" Irregardless, these are all better reports than the surgeon who basically felt like the whole area was full of cancer. My dear friend, an oncology scientist, called it the VOMIT phenomenon, (Victim Of Modern Imaging Technology).
Also our friend, Dr. Foote, the head of radiation oncology at Mayo, also a good friend and the Stake President in Rochester, looked at my case and felt that we should use Stereotactic Body Radiation Therapy (SBRT) to cut out the tumor. This is sometimes called Gamma knife or Cyber Knife. It's kind of like Star Wars stuff. The tumor is mapped using CT scans into a computer and then robots operate on you using intense focused radiation as scalpels. It's supposed to be super precise. They never actually cut your skin, the SBRT can destroy tissue wherever they want without a surgical entry. After talking to their sarcoma board at Mayo they all agreed that chemo was not a good choice at this point and that SBRT was a better choice. As of right now we are scheduled at Mayo next Tuesday for the planning appointments and one week later for the surgery. Recovery is supposed to be pretty good. Not too much pain or time down.
In the meantime, we are working on backup plans just in case. We are having our tumor analyzed genetically looking for any weakness that might be attacked. This is being done at Harvard by a group called "FoundationOne". This takes about 3 weeks to analyze. We are also going to Huntsman Cancer institute on Monday to see if they have any other bright ideas. And in addition we are making arrangements in Philadelphia at the Fox Chase cancer institute, to gather living tumor tissue prior to my surgery. They are doing research where they implant your tumor into mice and basically give them your cancer. They then use the mice to try out various chemotherapuetic attacks to see if any combination of chemicals might prove to be effective against the tumor. They will take about 3 months to have results using this technique.
Mostly our good news is how we feel in our hearts. Both JoLynne and I are at peace. Others have told me the that they have the same impression. They have felt that everything is going to be fine. We called Peter on Sunday to tell him what was going on. We had asked permission from his mission president before calling. The mission president invited Peter to his house to make the call so that he and his wife could make sure that Peter was okay after getting the news. After our call the mission president asked Peter if he could give him a blessing. He placed his hands on Peter's head and quoted the scripture "Be still and know that I am God". What are the chances that of all scriptures he could quote he would chose that one? As I was driving to work the other day I had a profound feeling, hard to express in words, but there was a sense of awe and power. I guess if I had to put it in words it would be "Behold, the hand of God", or "Prepare to witness a miracle".
JoLynne and I refer to the "dark thoughts", the ones that creep into our minds and demand center stage. Thoughts filled with fear and doubt. Lately they haven't had much time at center stage and we are grateful.
In the meantime, my hair is crazier than ever and Vivian invited us to a great pool party last night. Life is good!
We have had mostly good news lately.
After several calls, the oncologist at Mayo finally called us back. In the meantime several other parties had weighed in on my case. The radiologist at Mayo re-read my MRI and his conclusion was "One tumor with other areas impossible to differentiate" This is more consistent with what we were told by the radiologist here who said "One tumor with other areas consistent with radiation edema" Irregardless, these are all better reports than the surgeon who basically felt like the whole area was full of cancer. My dear friend, an oncology scientist, called it the VOMIT phenomenon, (Victim Of Modern Imaging Technology).
Also our friend, Dr. Foote, the head of radiation oncology at Mayo, also a good friend and the Stake President in Rochester, looked at my case and felt that we should use Stereotactic Body Radiation Therapy (SBRT) to cut out the tumor. This is sometimes called Gamma knife or Cyber Knife. It's kind of like Star Wars stuff. The tumor is mapped using CT scans into a computer and then robots operate on you using intense focused radiation as scalpels. It's supposed to be super precise. They never actually cut your skin, the SBRT can destroy tissue wherever they want without a surgical entry. After talking to their sarcoma board at Mayo they all agreed that chemo was not a good choice at this point and that SBRT was a better choice. As of right now we are scheduled at Mayo next Tuesday for the planning appointments and one week later for the surgery. Recovery is supposed to be pretty good. Not too much pain or time down.
In the meantime, we are working on backup plans just in case. We are having our tumor analyzed genetically looking for any weakness that might be attacked. This is being done at Harvard by a group called "FoundationOne". This takes about 3 weeks to analyze. We are also going to Huntsman Cancer institute on Monday to see if they have any other bright ideas. And in addition we are making arrangements in Philadelphia at the Fox Chase cancer institute, to gather living tumor tissue prior to my surgery. They are doing research where they implant your tumor into mice and basically give them your cancer. They then use the mice to try out various chemotherapuetic attacks to see if any combination of chemicals might prove to be effective against the tumor. They will take about 3 months to have results using this technique.
Mostly our good news is how we feel in our hearts. Both JoLynne and I are at peace. Others have told me the that they have the same impression. They have felt that everything is going to be fine. We called Peter on Sunday to tell him what was going on. We had asked permission from his mission president before calling. The mission president invited Peter to his house to make the call so that he and his wife could make sure that Peter was okay after getting the news. After our call the mission president asked Peter if he could give him a blessing. He placed his hands on Peter's head and quoted the scripture "Be still and know that I am God". What are the chances that of all scriptures he could quote he would chose that one? As I was driving to work the other day I had a profound feeling, hard to express in words, but there was a sense of awe and power. I guess if I had to put it in words it would be "Behold, the hand of God", or "Prepare to witness a miracle".
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| Crazy Hair! |
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| Vivian's pool party |
In the meantime, my hair is crazier than ever and Vivian invited us to a great pool party last night. Life is good!
Monday, April 1, 2013
A new day
Do you ever wake up and realize it's the weekend and just feel excited for all the things you can do and get done that day? Sometimes I just lay in bed and think of what I am going to do, work in the garden, play with my kids, take my wife on a date, and on and on. Just thinking about it makes me happy. Then I jump out of bed and the day begins, a new adventure to experience.
In many ways that is how my life feels right now. I feel like I have woken up from this "dream" of cancer with all that it involved. I see my life looking forward not back and think of all the things I am excited to do and accomplish. Just thinking about it makes me happy. I have so many things running through my mind I don't know where to start. Here is a list of words that I jotted down this morning trying to describe how I feel on this "new morning of my life"
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| A new day waits |
- Gratitude
- Praise for God who looked down on me and helped me in my time of need
- Wanting to live worthy, let my life reflect my gratitude
- Humbled
- Loved and cared for
- Not alone
- Time is precious
- Life is fragile
- Appreciate the moment
- God’s touch is so gentle, almost imperceptible and yet so profound
- Family members who have passed through the veil still care about me and are involved in my life
- Gratitude for a wife who supports me in my trials
- Thankful that the pain is gone
- Grateful to run. Good to have sore muscle pain instead of post surgical pain.
- How can I give back, who can I help?
So, it's time to jump out of bed and get to work. No time to spare, time to get going. Somewhere in the back of mind is still the fear of "what if" the cancer comes back but the sun is shining and I just can't dwell there. I have too much to get done. It's going to be a beautiful day!
Thursday, August 30, 2012
A new plan of attack
Well, it has been a busy week. I feel like I have been running from one appointment to another. Yesterday we returned home from Mayo with a new plan of attack to kill this cancer once and for all. Mostly the news was very upbeat.
We flew to Minnesota on Sunday and started our consultations early Monday morning. We met with various doctors until Tuesday evening. After much discussion this is the tentative plan. I am to return home and have two rounds of chemotherapy here in Provo to try and shrink the tumor. Basically a round includes three days of chemotherapy, about 5 hours a day followed by 18 days of recovery. They will be using a different chemical combination this time, Ifosfamide and Etoposide. Along with several other support drugs. These drugs are supposed to be less damaging than the last ones that I was given.
If the tumor shrinks substantially in 6 weeks they may continue on with chemo for one or two more rounds. If it doesn't shrink or grows then I will be off to surgery. Everyone believes that the two tumors that they found are regrowth of the original tumor. Our doctor said today, "You can fit a million cancer cells on the head of pin", in other words, it's easy to miss something in surgery and not even know you missed it. The new surgery will be much simpler. They intend to take out the top tumor through my nose and the lower tumor through my mouth. It will be outpatient surgery!
After I have healed for about 4 weeks they intend to start radiation. For that part I will need to move to Minnesota for 6 or 7 weeks for radiation every day, five days a week. The doctors felt strongly that the radiation should be done at Mayo. The radiation oncologist is also the Stake President and a very nice person. He said that because the tumors are small the radiation beam will be very small and have very little effect on adjacent structures. Just a good sunburn on my right cheek. I could do that in Mexico for free. I should have mentioned that to him. I can't say that I am too excited about being in Minnesota for the winter with my newly bald head. Oh well, I have lots of hats.
After radiation I may have two more rounds of chemo or perhaps I will just be done. It kind of depends on how effective the first rounds of chemotherapy appear to be. The only other piece of depressing news came from my blood test. The numbers have come up but not really enough to call them normal. They talked about possible damage to my bone marrow from the first chemotherapy. Hmmm... I would offer to eat more liver but then I would have bad blood and an upset stomach.
So after hearing everything we were trying to decide if this was the right thing to do. JoLynne and I were out walking along the river talking about our options. Generally we felt good about it but still some lingering doubts. It was a beautiful evening and the sunset was beautiful. I was trying to get a picture but there was too much in the way. Finally I found a place to snap a picture. After taking it both JoLynne and I realized that the rays of sun all focused right on the building where my radiation and surgery would be performed. Maybe it was coincidence but it gave us both goose bumps. We think we are doing the right thing.
Tuesday evening we stopped at the temple in St. Paul. Again a beautiful sunset but this time the sun's rays were pointing to the Minnesota temple. I really felt like this was God's way of telling us that in these two places we would find the answers to our prayers.
Today we went to set up the chemotherapy appointments with my doctor. They drew blood again and by some miracle my blood levels have now returned to normal. It feels like God keeps clearing obstacles out of our way.
Sometimes when I think about this whole adventure I wonder why things are happening the way that they do. I don't really know the answers but this is what it seems to me. It feels like this whole cancer thing is like a big brain teaser puzzle. The kind where you have to move each piece in just the right way and the right time to solve the puzzle. Of course God could just heal me but instead he is managing my disease with the resources at hand, orchestrating events. For example, if they had a positive biopsy the first time they would have started me with chemotherapy instead of surgery. We now know that standard chemo didn't work against this cancer and it would have grown and probably made the tumor inoperable. If they had done radiation the first time it would have been a large area. The result would have been much greater damage to my other structures. Now the tumors are small and the radiated area will be small as well.
Really, all I know is that God is in charge and that I am going to get better. It just takes patience. In the meantime, thank you for your prayers. Please pray for my family. I sometimes think it would be just as hard to watch someone you you love go through this as it would be to go through it yourself.
We flew to Minnesota on Sunday and started our consultations early Monday morning. We met with various doctors until Tuesday evening. After much discussion this is the tentative plan. I am to return home and have two rounds of chemotherapy here in Provo to try and shrink the tumor. Basically a round includes three days of chemotherapy, about 5 hours a day followed by 18 days of recovery. They will be using a different chemical combination this time, Ifosfamide and Etoposide. Along with several other support drugs. These drugs are supposed to be less damaging than the last ones that I was given.If the tumor shrinks substantially in 6 weeks they may continue on with chemo for one or two more rounds. If it doesn't shrink or grows then I will be off to surgery. Everyone believes that the two tumors that they found are regrowth of the original tumor. Our doctor said today, "You can fit a million cancer cells on the head of pin", in other words, it's easy to miss something in surgery and not even know you missed it. The new surgery will be much simpler. They intend to take out the top tumor through my nose and the lower tumor through my mouth. It will be outpatient surgery!
After I have healed for about 4 weeks they intend to start radiation. For that part I will need to move to Minnesota for 6 or 7 weeks for radiation every day, five days a week. The doctors felt strongly that the radiation should be done at Mayo. The radiation oncologist is also the Stake President and a very nice person. He said that because the tumors are small the radiation beam will be very small and have very little effect on adjacent structures. Just a good sunburn on my right cheek. I could do that in Mexico for free. I should have mentioned that to him. I can't say that I am too excited about being in Minnesota for the winter with my newly bald head. Oh well, I have lots of hats.
After radiation I may have two more rounds of chemo or perhaps I will just be done. It kind of depends on how effective the first rounds of chemotherapy appear to be. The only other piece of depressing news came from my blood test. The numbers have come up but not really enough to call them normal. They talked about possible damage to my bone marrow from the first chemotherapy. Hmmm... I would offer to eat more liver but then I would have bad blood and an upset stomach.
Tuesday evening we stopped at the temple in St. Paul. Again a beautiful sunset but this time the sun's rays were pointing to the Minnesota temple. I really felt like this was God's way of telling us that in these two places we would find the answers to our prayers.
Sometimes when I think about this whole adventure I wonder why things are happening the way that they do. I don't really know the answers but this is what it seems to me. It feels like this whole cancer thing is like a big brain teaser puzzle. The kind where you have to move each piece in just the right way and the right time to solve the puzzle. Of course God could just heal me but instead he is managing my disease with the resources at hand, orchestrating events. For example, if they had a positive biopsy the first time they would have started me with chemotherapy instead of surgery. We now know that standard chemo didn't work against this cancer and it would have grown and probably made the tumor inoperable. If they had done radiation the first time it would have been a large area. The result would have been much greater damage to my other structures. Now the tumors are small and the radiated area will be small as well. Really, all I know is that God is in charge and that I am going to get better. It just takes patience. In the meantime, thank you for your prayers. Please pray for my family. I sometimes think it would be just as hard to watch someone you you love go through this as it would be to go through it yourself.
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