For the past few months it seemed like I was on a cancer sabbatical.
DH and I hiked in Colorado and along the Blue Ridge Parkway. I visited a friend in Chicago, started knitting up a storm after a visit to a yummy yarn shop there, and joined Dr. Deanna Attai in San Francisco for ASCO's Breast Cancer Symposium, where she presented our poster on #BCSM, "Can Twitter Social Media be an Effective Tool for Breast Cancer Survivor Support and Education?" Later that month my sister and I had a marvelous time together at our nephew's wedding in Iowa. Her son and his girlfriend were able to join us as well and everyone was having such a great time no one took photos of all of us together. It's been an extraordinarily rich time, the colors brighter. I'll remember mountain air at dusk edged in lavender.
That's how life flows, in and out, as rhythmic as the sea.
My time between cancer check-ups had been moved out to four months from every three months.
It was like stretching out in newly discovered freedom. Due to a glitch with my new insurance injections of Xgeva were interrupted so all of a sudden I had NO cancer appointments for two months. No email reminders..... your appointment is in seven days, your appointment is in three days, your appointment is tomorrow. Excuse me, but you need to show up now. Any cancer patient will tell you that the never-ending appointments remind you all over again of your illness just about the time you've managed to reduce the dreads and dark thoughts down into a manageable size.
It never even occurred to me that this was too good to last but as I was leaving yesterday to meet with my oncologist for last Friday's scan results I suddenly tweeted: "cancer stirs up all the great uncertainties. Even tho I'm feeling well I'm holding on to the other shoe hoping it doesn't drop."
Well, the shoe didn't actually drop but I was reminded that cancer can change the trajectory of your life far like that. The good news is that my scans indicated stable disease. That is excellent given the scope of disease when my mets were diagnosed. Scans, combined with your physical well being and symptoms, are the key players in determining the course of treatment. Tumor markers, substances in the blood that measure your response to treatment, are also factored in. The challenge that presented itself is that my tumor markers have more than doubled since my last appointment. Something is happening cancer wise, we just don't know what that is yet, or even if there will be a problem. It could be growing disease that isn't yet visible. It could be disease that isn't doing anything, that is simply there. Because it is. kAll we have is a number, albeit a scary one. I can't treat a number, my oncologist said and I agree with that.
She was concerned and assertive. We wouldn't change treatment but we will change strategy. The four-month sabbaticals between appointments is over for now. I'll return in two months for more detailed imaging, MRI's of the abdomen and pelvis instead of CT's. In the interim, I'll meet with my GI oncologist again to see if a repeat endoscopy is in order. A year ago that's how metastatic breast cancer was discovered in my stomach lining. That's the dog that caused all the symptoms I was experiencing a year ago and have started to return, a bit at a time. For the time being I'm returning to my broth/bread/ice cream diet to stay on the safe side.
Earlier this year we celebrated when I was able to eat salad again, and enjoy a big glass of water at once. I'm sure those days will return. My cancer sabbatical has shored me up with a wealth of experience and images, long days where cancer never entered my mind. Whatever this is, we'll get through it. Earlier today a friend posted what seemed perfect for the next few months of uncertainty, "Hope for the best. Cope for the rest."
That's how we roll.
Tumor Markers -- NCI
ASCO Guidelines on Tumor Markers -- ASCO*
Thanks to @thecancergeek for tweeting this during out 11/3 #bcsm tweet chat, "Ask the Docs."
 |
| Outside Crested Butte, Colorado |
DH and I hiked in Colorado and along the Blue Ridge Parkway. I visited a friend in Chicago, started knitting up a storm after a visit to a yummy yarn shop there, and joined Dr. Deanna Attai in San Francisco for ASCO's Breast Cancer Symposium, where she presented our poster on #BCSM, "Can Twitter Social Media be an Effective Tool for Breast Cancer Survivor Support and Education?" Later that month my sister and I had a marvelous time together at our nephew's wedding in Iowa. Her son and his girlfriend were able to join us as well and everyone was having such a great time no one took photos of all of us together. It's been an extraordinarily rich time, the colors brighter. I'll remember mountain air at dusk edged in lavender.
That's how life flows, in and out, as rhythmic as the sea.
My time between cancer check-ups had been moved out to four months from every three months.
 |
| With Deanna Attai, MD. ASCO Breast |
It never even occurred to me that this was too good to last but as I was leaving yesterday to meet with my oncologist for last Friday's scan results I suddenly tweeted: "cancer stirs up all the great uncertainties. Even tho I'm feeling well I'm holding on to the other shoe hoping it doesn't drop."
Well, the shoe didn't actually drop but I was reminded that cancer can change the trajectory of your life far like that. The good news is that my scans indicated stable disease. That is excellent given the scope of disease when my mets were diagnosed. Scans, combined with your physical well being and symptoms, are the key players in determining the course of treatment. Tumor markers, substances in the blood that measure your response to treatment, are also factored in. The challenge that presented itself is that my tumor markers have more than doubled since my last appointment. Something is happening cancer wise, we just don't know what that is yet, or even if there will be a problem. It could be growing disease that isn't yet visible. It could be disease that isn't doing anything, that is simply there. Because it is. kAll we have is a number, albeit a scary one. I can't treat a number, my oncologist said and I agree with that.
She was concerned and assertive. We wouldn't change treatment but we will change strategy. The four-month sabbaticals between appointments is over for now. I'll return in two months for more detailed imaging, MRI's of the abdomen and pelvis instead of CT's. In the interim, I'll meet with my GI oncologist again to see if a repeat endoscopy is in order. A year ago that's how metastatic breast cancer was discovered in my stomach lining. That's the dog that caused all the symptoms I was experiencing a year ago and have started to return, a bit at a time. For the time being I'm returning to my broth/bread/ice cream diet to stay on the safe side.
Earlier this year we celebrated when I was able to eat salad again, and enjoy a big glass of water at once. I'm sure those days will return. My cancer sabbatical has shored me up with a wealth of experience and images, long days where cancer never entered my mind. Whatever this is, we'll get through it. Earlier today a friend posted what seemed perfect for the next few months of uncertainty, "Hope for the best. Cope for the rest."
That's how we roll.
Tumor Markers -- NCI
ASCO Guidelines on Tumor Markers -- ASCO*
Thanks to @thecancergeek for tweeting this during out 11/3 #bcsm tweet chat, "Ask the Docs."
12 comments:
Ah, Jode...loving the scan results so I'm gratefully holding onto them with you. So glad you've had some lovely time in recent months to enjoy life, friends, family and (almost) forgetting -- not to mention salad!!! xoxo, Kathi
Jody although we only met in person once, I continue to wish you all Google results on the uncertain Journe that we're on! :) mj
Little appointment sabbaticals are always welcome. I am happy when I don't have a doctor appointment for two or three weeks at a time. Sometimes it stretches to a month - but that is rare. I'm sorry to hear about the TM updates. Hugs
We all learn so much from reading your blog -- so much more than about navigating the ins and outs of a dreaded diagnosis. We learn about seeing what is important and beautiful in life. We learn not to take the precious moments with family and dear friends for granted. We learn how to look fear in the eye and do as much as possible to confront it head on. Most of all, my dear, we learn about the substance and strength a beautiful, dear lady has... and is willing to share with others who look to you for encouragement, knowledge and direction. I know I speak for all is saying how much we admire and love you, dear Jody.
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Much love to you and here's to hoping for the best and coping with the rest. I feel strengthened by this post, thought you should know. You shore me up like your sabbatical shored you up. You are my sabbatical:) xxoo
Jody, I've so enjoyed seeing all the pictures of your sabbatical - hiking, beautiful skies, happy dogs & smiles. I am wishing you more of those days and less uncertainty!! And all the strength and peace you need moving forward.
Thank you all:) This is such a small part of the reality that all metastatic cancer patients face. I feel fortunate that this is all I'm facing for now. It's difficult knowing what CAN happen.
So we celebrate today:)
I appreciate your comments so much.
Love,
jody
So well expressed. So well. Knitting soon?
Knitting soon, Christy! Great idea. When in doubt: knit with a friend. What could be better?
Hi Jody,
I'm glad you've been busy doing all those things. How lovely to nearly 'forget' the cancer crap at least for a while. I hate hearing about those tumor markers rising, but stable scans, I like that. I know you and your oncologist will figure out what you need to do from here. "Hope for the best. Cope for the rest." That's darn good advice. Much love to you dear friend. Thank you for the update. xx
How do you not think of cancer? I think of it every day, even when I'm doing well. Somedays just have more fear in them than others, but I always think of it. Knocking on wood about the further scans.
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