Journal entry by Heather Moret —
I am so happy to share that my scan went well today. Excellent news!!! There was no sign of cancer and my bloodwork looks good - the doctor said my bloodwork actually looks better than his! I'll certainly take that. Now to settle down my heart and mind from the anxiety that accompanied me the last few days and weeks.
Some pain in my left arm sent me to the ER the day before Thanksgiving just to be sure it was not heart related (surprisingly, that can be an indicator of a heart attack in women). My heart was fine and an ultrasound showed no obvious tumors in my arm. While the immediate discomfort did abate, it didn't go away entirely and throughout the last 6-8 weeks the pain has returned again many times, radiating through my left upper arm. When my right shin started aching in various places and the night sweats and mouth sores returned, I had to wonder what was going on inside my body. Dr. Google led me to the possibility of leukemia - one of the secondary cancers that can occur in people who have had the treatment regimens I've had. That thought sent me into a bit of a tailspin, though I was generally able to remind myself of the problems Dr. Google creates.
Stephen accompanied me today and we asked all of our questions, including raising my fears about a secondary cancer, which can be caused by intense treatment designed to address the primary cancer. The doctor put these fears to rest, at least for now. He said there are generally two periods when a secondary cancer can occur. The first is within the first three years after treatment (i.e., "early onset"). Since DA-R-EPOCH that I had the first time around is what could cause trouble, it is reassuring to know that come April I will have made it three years since that treatment ended. The second period when a secondary cancer can crop up is in the five to ten years post treatment. I'm a few years out from that period and our main goal is just to make it to two years post VIPOR-P so I can effectively shelve that concern for quite a while.
For some time now, Stephen and I have been referring to my doctors' visits as auditions. As in, as a patient you feel like you are auditioning for care. Pick me - I promise I'm not overly needy, I'll follow your protocol, and not cause too much trouble. Please accept me as a patient - I won't complain or be overly dramatic, unreasonable, or paranoid. Pick me, pick me, pick me!!! It seems insane, but that is actually how it feels. Perhaps the same has been true for you as well.
Today, I told Stephen I felt like I was having to walk that line between asking my questions to put my mind at ease and watching what I say so as not to make the doctors feel like I'm overly paranoid, frightened, or trusting Dr. Google more than them. As one of my girlfriends has always said about her work, it's all about managing perceptions. Except that as a patient, you'd like to believe you can just say what's going on, what you're afraid of and get a compassionate response without worrying that you might not get a coveted spot in a clinical trial or space on the doctor's calendar if you're deemed too much of a problem. I'm not sure what the solution is, but it does seem like a bigger problem than just my own experience.
The next milestone will be a BIG one - come the end of April it will have been two full years since I finished the VIPOR-P protocol. Wow. That really is hard to believe. In some ways so very much has happened in those months and in other ways it seems like yesterday that I was navigating the halls of NIH regularly. The doctor today emphasized that two years is a big milestone. We need to find a way to celebrate!! Put your suggestions in the comments below and let's see what we can come up with to mark this special occasion!
Following the suggestion of writer Tish Harrison Warren, I got AW Tozer's book, My Daily Pursuit, to use for daily devotionals. It's been great - short, but challenging and meaningful. The verse he had today was truly perfect. Here's the King James version of Isaiah 26:3-4:
Thou wilt keep him in perfect peace, whose mind is stayed on thee:
because he trusteth in thee. Trust ye in the Lord for ever:
for in the Lord Jehovah is everlasting strength
Now if I could only learn to keep my mind in a place of trusting in God's provision and strength, then I think I could get to a place of perfect peace. I'm certainly a work in progress, but this is what I long for - knowing and resting in God's perfect peace. May it be so for all of us! Thanks for following along and have a great night!
Some pain in my left arm sent me to the ER the day before Thanksgiving just to be sure it was not heart related (surprisingly, that can be an indicator of a heart attack in women). My heart was fine and an ultrasound showed no obvious tumors in my arm. While the immediate discomfort did abate, it didn't go away entirely and throughout the last 6-8 weeks the pain has returned again many times, radiating through my left upper arm. When my right shin started aching in various places and the night sweats and mouth sores returned, I had to wonder what was going on inside my body. Dr. Google led me to the possibility of leukemia - one of the secondary cancers that can occur in people who have had the treatment regimens I've had. That thought sent me into a bit of a tailspin, though I was generally able to remind myself of the problems Dr. Google creates.
Stephen accompanied me today and we asked all of our questions, including raising my fears about a secondary cancer, which can be caused by intense treatment designed to address the primary cancer. The doctor put these fears to rest, at least for now. He said there are generally two periods when a secondary cancer can occur. The first is within the first three years after treatment (i.e., "early onset"). Since DA-R-EPOCH that I had the first time around is what could cause trouble, it is reassuring to know that come April I will have made it three years since that treatment ended. The second period when a secondary cancer can crop up is in the five to ten years post treatment. I'm a few years out from that period and our main goal is just to make it to two years post VIPOR-P so I can effectively shelve that concern for quite a while.
For some time now, Stephen and I have been referring to my doctors' visits as auditions. As in, as a patient you feel like you are auditioning for care. Pick me - I promise I'm not overly needy, I'll follow your protocol, and not cause too much trouble. Please accept me as a patient - I won't complain or be overly dramatic, unreasonable, or paranoid. Pick me, pick me, pick me!!! It seems insane, but that is actually how it feels. Perhaps the same has been true for you as well.
Today, I told Stephen I felt like I was having to walk that line between asking my questions to put my mind at ease and watching what I say so as not to make the doctors feel like I'm overly paranoid, frightened, or trusting Dr. Google more than them. As one of my girlfriends has always said about her work, it's all about managing perceptions. Except that as a patient, you'd like to believe you can just say what's going on, what you're afraid of and get a compassionate response without worrying that you might not get a coveted spot in a clinical trial or space on the doctor's calendar if you're deemed too much of a problem. I'm not sure what the solution is, but it does seem like a bigger problem than just my own experience.
The next milestone will be a BIG one - come the end of April it will have been two full years since I finished the VIPOR-P protocol. Wow. That really is hard to believe. In some ways so very much has happened in those months and in other ways it seems like yesterday that I was navigating the halls of NIH regularly. The doctor today emphasized that two years is a big milestone. We need to find a way to celebrate!! Put your suggestions in the comments below and let's see what we can come up with to mark this special occasion!
Following the suggestion of writer Tish Harrison Warren, I got AW Tozer's book, My Daily Pursuit, to use for daily devotionals. It's been great - short, but challenging and meaningful. The verse he had today was truly perfect. Here's the King James version of Isaiah 26:3-4:
Thou wilt keep him in perfect peace, whose mind is stayed on thee:
because he trusteth in thee. Trust ye in the Lord for ever:
for in the Lord Jehovah is everlasting strength
Now if I could only learn to keep my mind in a place of trusting in God's provision and strength, then I think I could get to a place of perfect peace. I'm certainly a work in progress, but this is what I long for - knowing and resting in God's perfect peace. May it be so for all of us! Thanks for following along and have a great night!
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