I did have a milkshake today. I do still feel the effect of that in my throat, it's getting better and it was certainly worth it. Tasted very good!
Dr. Clark: Today was a meeting to see how I was recovering from the toxicity to chemo.
Questions answered: I can never take Oxilaplatin or 5 FU or its dirivities again. I have two enzymes (a jillion numbers and letters, so I didn't get them written down) that work as enemy agents against those two drugs.
With that piece now a known, what is next? The goal is to complete chemo. The question: what drugs are best with the least side effects? That is not answerable as of today.
He is consulting with research doctors and will get back with me by the end of this week of the beginning of next week. There are more things available in his "bag of tricks". I so appreciate he is consulting with others who are are on the cutting edge of chemo treatments.
The other questions I have: how many people have this? Not many. There are just not enough of us to have a lot of information to share. This situation is "Very rare". (ah! just like me! ha)
He did say my blood work is great and I am ready for more chemo. I almost completed 50% of my treatment. Jim and I both read between the lines, you need to complete chemo if at all possible.
I have two spots on my liver that are very small. If I cannot take any more chemo, I will have a scan to evaluate what they are. No one in the hospital or at Dr. Clark's office has ruled out cancer, nor have they ruled that it is. The spots are simply too small to make a determination.
The next question, how do you determine if the cancer is in remission at this time? My CEA levels have always been normal, meaning they have never shown any signs of going up. My question is will my CEA ever indicate cancer? Unknown. So the game plan now: IF I can receive more chemo, scans will come after chemo. If I cannot have more chemo, scans will begin pretty quickly.
I was channel surfing recently; I saw one of the Harry Potter movies was on. I love the crazy bus scene in this movie. Harry gets on the bus, believing it was a regular bus. It is anything but a regular bus. There are crazy characters everywhere. At one point this bus is heading right for two buses, coming in their direction. The bus squeezes itself between the two buses and comes out on the other side. I was thinking about that ride and how very similar my ride through this past few months has been like that bus ride. Many characters, many perils and dangers, some laughs and tears. Harry does made it out of the bus and back to school. Maybe a poor analogy, but it seems to fit to me. Nothing about this has been in the norm.
I pray that these good doctors will find a cocktail of drugs that will work for me; that I can complete chemo and most of all that we find no sign of cancer. If I cannot complete chemo - well, I will finish that sentence when I find this to be the fact. Until then, I turn to God, asking him to continue his faithful walk with us and most of all that we will continue to trust and walk with Him. Though I want answers and for things to start up immediately, there is great wisdom in caution. Dr. Clark's intent and will is to heal not harm. I have to slow down my 'hurry up' brain.
Dr. Clark: Today was a meeting to see how I was recovering from the toxicity to chemo.
Questions answered: I can never take Oxilaplatin or 5 FU or its dirivities again. I have two enzymes (a jillion numbers and letters, so I didn't get them written down) that work as enemy agents against those two drugs.
With that piece now a known, what is next? The goal is to complete chemo. The question: what drugs are best with the least side effects? That is not answerable as of today.
He is consulting with research doctors and will get back with me by the end of this week of the beginning of next week. There are more things available in his "bag of tricks". I so appreciate he is consulting with others who are are on the cutting edge of chemo treatments.
The other questions I have: how many people have this? Not many. There are just not enough of us to have a lot of information to share. This situation is "Very rare". (ah! just like me! ha)
He did say my blood work is great and I am ready for more chemo. I almost completed 50% of my treatment. Jim and I both read between the lines, you need to complete chemo if at all possible.
I have two spots on my liver that are very small. If I cannot take any more chemo, I will have a scan to evaluate what they are. No one in the hospital or at Dr. Clark's office has ruled out cancer, nor have they ruled that it is. The spots are simply too small to make a determination.
The next question, how do you determine if the cancer is in remission at this time? My CEA levels have always been normal, meaning they have never shown any signs of going up. My question is will my CEA ever indicate cancer? Unknown. So the game plan now: IF I can receive more chemo, scans will come after chemo. If I cannot have more chemo, scans will begin pretty quickly.
I was channel surfing recently; I saw one of the Harry Potter movies was on. I love the crazy bus scene in this movie. Harry gets on the bus, believing it was a regular bus. It is anything but a regular bus. There are crazy characters everywhere. At one point this bus is heading right for two buses, coming in their direction. The bus squeezes itself between the two buses and comes out on the other side. I was thinking about that ride and how very similar my ride through this past few months has been like that bus ride. Many characters, many perils and dangers, some laughs and tears. Harry does made it out of the bus and back to school. Maybe a poor analogy, but it seems to fit to me. Nothing about this has been in the norm.
I pray that these good doctors will find a cocktail of drugs that will work for me; that I can complete chemo and most of all that we find no sign of cancer. If I cannot complete chemo - well, I will finish that sentence when I find this to be the fact. Until then, I turn to God, asking him to continue his faithful walk with us and most of all that we will continue to trust and walk with Him. Though I want answers and for things to start up immediately, there is great wisdom in caution. Dr. Clark's intent and will is to heal not harm. I have to slow down my 'hurry up' brain.
"Hasten slowly."
--Augustus Caesar quoted by Suetonius 1st century A.D.
I'm going to have to learn to live on "Bahama Time" during these days. Back to the Navy years - hurry up and wait.
2 comments:
OK. There's a start to a plan, I know not a full plan, but I will be anxiously awaiting and praying for Dr. Clark and the research doctors he is consulting, and that you will hear from him in that time frame. Praying Praying Praying. Thanks for posting so quick. I've been checking a lot today. Praise God for your good blood counts that are ready to take on the next plan. Yes, not the norm, but your attitude is beyond what any normal person could wish for...you are an inspiration! Love you! God is good, all the time! Marilyn
I just keep thinking "in God's timing..." When all is said and done-we do all that we can do and ultimately it WILL all come together as God wills it to. Trust and Patience is needed now - these are becoming very much a part of your journey. Continue to rest and recuperate, enjoy another milkshake or two (add in some protein if allowed), and feel God's peace and love envelop you.
Always in prayer for you, Jim, Molly, Dr. Clark and all of your medical team.
Love you,
Deb
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