Before I actually get to the important stuff, I must share some things that I learned about myself during the trip to New York. I cannot sleep on domestic flights. I may close my eyes and fade in and out of consciousness, but I do not sleep. The other thing I learned is that going for over 24 hours without sleep in not a good idea. In an attempt to save money by not getting a hotel, I flew during the night to get to New York first thing in the morning and then flew straight back after I was done at the hospital. This placed my body in a weakened state and I caught a bug. I now have nice cold that I do not think I would have, had I made sure I got my 8 hours in every 24 hour period. I think most people come to this realization in their lives, but I was not expecting mine to come this soon. To be fare, I was not expecting to have had 10 months of chemotherapy at point in my life either. I now will travel more wisely and make sure I the rest I need. I will save the Superman routine for wrestling with the kids.
History: My oncologist, Dr. Wright, has a professional relationship with a cancer surgeon at Memorial Sloan Kettering Cancer Center in New York. They sent my scans and medical history to this doctor and the sarcoma team and the center. They agreed to meet with me and present a surgical option for removing my cancer. The surgeon is world renown and have performed over 100 of these operation on my specific type of cancer -which is something to be said since my type of cancer is so rare. The reason my doctor referred my case to them is because she has never had a patient with my type of cancer survive the 14 sessions of chemotherapy. They either get too sick or the cancer stops responding to the chemotherapy. This referral was an attempt to get more ideas on how to proceed with treatment.
On February 18th, I was able to visit three doctors at Memorial Sloan Kettering Cancer Center in New York. It is an amazing facility, and really big. After the hassle every new patient faces of getting registered, I got some CT scans performed and then started meeting with the doctors. I met an oncologist that specializes in chemotherapy and she explained what type of chemotherapy they would recommend for post-surgery. She was very helpful and provided a lot of useful information. Following her, I was able to talk to the surgeon. He did a very thorough job and explaining all aspects of the surgery. He answered all our questions completely and professionally. The surgery is basically this. I would have an incision from my neck to my pelvis. They open me up and harvest all the cancer that they can find. (They said that there is always more cancer in the patient than what shows up on the scan.) The surgery would take 12-14 hours - a long time. I would need at least one blood transfusion during the operation because of the bleeding. Recovery is 7-10 days in hospital and then a week out patient just to make sure all is well. After the surgery, I would undergo radiation and chemotherapy just to make sure no lingering cancer cells have a chance to grow. There are possible short term and long term side effects of the surgery. It will depend on how entwined the cancer is with other organs, nerves, and tissue. The short term effects do not sound fun but are do able. The long term ones - we will get a priesthood blessing for those - but not of them are debilitating. They said that by 6 months I should be back to normal routines and activities. I met with another doctor that has a medical trial he is leading that I would be a good candidate for. It involves flushing the abdomen with radiated proteins that are specific to my type of cancer. It sounded very promising. I did a few other tests while I was there and then came home. All the staff were friendly and helpful. It seems like a great institution. The most sober part about the visit is a phone call Angela made to one of the nurses that helped me, after I had returned home. The nurse said that in her experience, because my type of cancer is so aggressive, she felt I had 1-2 years if I did nothing. That was hard to hear. The other hard information is that this cancer has a 15% survival rate past 5 years. The surgery only increases that to 24%. They do not have the data to say how many make it past 10 years or beyond.
Since the visit, Angela and I have prayed earnestly to know what to do. This would have a major impact on our family - either way we decide. We talked about not doing the surgery and then asking "What if...?" if I did return to Father in Heaven in the next few years. How would the children feel about it as they got older and understood all the facts surrounding the decision? If something happened during the surgery, how would Angela explain it to the children? Is 24% really worth all the pain and potential side effects? There were so many mixed emotions going through us. We just didn't know what to do - what to think.
I know that Heavenly Father has a plan for me. I know that I will not die before my mission on this earth is complete. I may not understand the how or the why of his promises, but I trust in his promises. If I follow the Spirit, He will lead me down the paths that I need to take to be prepared to live with Him as an eternal family.
I have felt impressed to move forward and do the surgery. We are planning on leaving March 4th and returning March 27th. I do not think think will measure up to the Huntsman Hotel, but it will be new and I will a lot of attention from all sorts of people. I told Angela that if anyone tries to make me laugh too soon during recovery - I will kill them - if I survive the laughing. This was scary, but the Spirit had put peace in my heart about it. I can smile and joke about it instead of cry.
Thanks for all your prayers and all the love you give our family.
Eternally grateful, Doug.
Friday, February 21, 2014
Monday, February 3, 2014
Session 14 - What do we do now?
When you come to the end of something it may be because you have reached your goal, ran out of resources, got bored, the activity got to dangerous, someone told you to stop so you did, or you changed to a different activity for whatever reason. I am currently in Session 14 of chemotherapy - the last session initially prescribed by my doctor. Why 14 sessions? I do not know really. I am the first adult patient with my type of cancer that has made it past 8-9 sessions. The patients have either gotten too sick or the cancer stops responding to the chemo and starts growing. I have been very blessed. I have caused the doctor to enter new territory - which she is happy to enter.
I must admit that I am glad this is session 14. Even though I have not gotten really sick like other patients, I still don't feel all the way well. There is an underlying feeling of 'something not good is happening to your body' and it does not go away until I am done with the chemo. I will be glad to take a break - if only for a moment.
My doctor has been searching for other doctors that have had patients like me - to get ideas of what to do next. They don't want to keep pumping me full of the chemo at the dose they have been. We have talked about surgery, but the surgeon here at Huntsman did not think surgery was a good option. The radiation doctor suggested trying radiation on a couple of 'easy' sites that would have minimal side effects. We were thinking all this over when our doctor told us of a surgeon at Sloan-Kettering Hospital in New York City.
This surgeon specializes in rare cancers - one of which is my type of cancer. This a another testament of Heavenly Father's love for his children. My doctor happens to work with this surgeon once a year at a conference/clinic to educate other doctors on a rare cancer in children. This relationship has allowed us to get referred and get an appointment with the surgeon at Sloan-Kettering in a short amount of time.
I have an appointment for Feb 18th to get scans done in NYC and then meet with the doctor. I have been hesitant about surgery because of the many tumors that I have. We are praying hard for inspiration for us and the doctor so we make the correct decision.
If surgery does not work out, I will most likely go on "Chemo Lite" - a special blend with only a faction of the potency and takes only a fraction of the time to administer. How long this would last, I do not know. At some point they would stop and just do scans periodically. As long as the cancer did not grow, I would be able to stay off the chemo.
If surgery is a go, then I will be in NYC for most of March. They said that recovery takes about 3 weeks and I cannot fly until I am recovered. We will clarify with the doctor on Feb 18th how that all works.
Heavenly Father has truly blessed our family during this time. I have been able to work and perform normal activities. I have even been playing racquetball at work. We have the normal challenges of raising a family, but also the joys of raising a family. We have many people (angels) praying and fasting for us. We feel the power of your prayers. We are so thankful for YOU!!!!
The doctor said she has never had a patient like me. Never had someone with my type of cancer last this long. Lets keep beating the odds and live for another 60 years : )
I must admit that I am glad this is session 14. Even though I have not gotten really sick like other patients, I still don't feel all the way well. There is an underlying feeling of 'something not good is happening to your body' and it does not go away until I am done with the chemo. I will be glad to take a break - if only for a moment.
My doctor has been searching for other doctors that have had patients like me - to get ideas of what to do next. They don't want to keep pumping me full of the chemo at the dose they have been. We have talked about surgery, but the surgeon here at Huntsman did not think surgery was a good option. The radiation doctor suggested trying radiation on a couple of 'easy' sites that would have minimal side effects. We were thinking all this over when our doctor told us of a surgeon at Sloan-Kettering Hospital in New York City.
This surgeon specializes in rare cancers - one of which is my type of cancer. This a another testament of Heavenly Father's love for his children. My doctor happens to work with this surgeon once a year at a conference/clinic to educate other doctors on a rare cancer in children. This relationship has allowed us to get referred and get an appointment with the surgeon at Sloan-Kettering in a short amount of time.
I have an appointment for Feb 18th to get scans done in NYC and then meet with the doctor. I have been hesitant about surgery because of the many tumors that I have. We are praying hard for inspiration for us and the doctor so we make the correct decision.
If surgery does not work out, I will most likely go on "Chemo Lite" - a special blend with only a faction of the potency and takes only a fraction of the time to administer. How long this would last, I do not know. At some point they would stop and just do scans periodically. As long as the cancer did not grow, I would be able to stay off the chemo.
If surgery is a go, then I will be in NYC for most of March. They said that recovery takes about 3 weeks and I cannot fly until I am recovered. We will clarify with the doctor on Feb 18th how that all works.
Heavenly Father has truly blessed our family during this time. I have been able to work and perform normal activities. I have even been playing racquetball at work. We have the normal challenges of raising a family, but also the joys of raising a family. We have many people (angels) praying and fasting for us. We feel the power of your prayers. We are so thankful for YOU!!!!
The doctor said she has never had a patient like me. Never had someone with my type of cancer last this long. Lets keep beating the odds and live for another 60 years : )
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