So I got to spend 4 days with my dear aunt and uncle - they drove from San Francisco to Portland just to hang out with us. Wonderful!!
On Thursday, they returned to the bay area, Then the CT scan was done, then Thursday evening my 2 youngest kids, and 2 of their friends all flew to Portland. Bliss!!
Friday - yesterday, the kids saw the infusion room, and they felt a lot better about where and how I was getting treatment. Friendly, efficient, compassionate nurses with a sense of humor. Bright, big windows, with an awesome view of sun setting on a snow covered Mt. Hood, with that delicate pink color of this time of day and this time of light.
Oh, and the CT scan showed NO new lesions, and a 25% or so decrease in volume of the liver mass. Looking like two more rounds of chemo, then maybe liver surgery in late January. Very very good news.
My eldest kiddo is gonna be here 12/27, so everyone but her hubbie, D, will here be together. Wish he could come, but I understand he has got other family members that need his presence this season.
Hope you are all enjoying this holiday season - I am being so blessed, it is ridiculous. God remains steadfastly in love with us. As I am learning, it is the presence, not the presents of loved ones that brings the joy.
Saturday, December 18, 2010
Monday, December 13, 2010
Finally back to writing
Hello:
The last 3 weeks have been more challenging than in the past. I am finishing up the 4th round of chemo, then Thursday a CT of most of my body, then more chemo starting Friday. and maybe a decision about whether i need surgery for the liver mass.
The frustrating change was adding neulasta - which increases the kind of white blood cells that fight bacterial infections - it retails for $6000.00 per shot, every two weeks. Whew! And it makes me really tired and crabby and feeling like I have a bacterial infection for about 5-10 days....
But another thing that is interesting. There is like NO sunlight here most of December - they call any sightings "sun breaks" - and I was getting pretty disheartened. So I tried a therapeutic light for seasonal affective disorder. Not only did my mood improve, but so did energy, and the neurocognitive testing, the results of which had been low and stable over 3 weeks, shot up by 10 points the first day, 15 points the first week of light therapy. (So if I use this daily for 5 weeks, I'll be smart?) Gotta see if there is any cognitive data for using light therapy.
Went to Yoga today, and realized that there is ototoxicity from at least one of the meds. The teacher, who has a wonderful British accent, kept telling us to roll up in a fecal ball to stretch. Sounds gross to me, but I am new to yoga. Finally I asked her - she mean "fetal ball" all this time.
Hope your are having a great time this holiday season. And taking time to give yourself and those you love your presence, not just presents.
The last 3 weeks have been more challenging than in the past. I am finishing up the 4th round of chemo, then Thursday a CT of most of my body, then more chemo starting Friday. and maybe a decision about whether i need surgery for the liver mass.
The frustrating change was adding neulasta - which increases the kind of white blood cells that fight bacterial infections - it retails for $6000.00 per shot, every two weeks. Whew! And it makes me really tired and crabby and feeling like I have a bacterial infection for about 5-10 days....
But another thing that is interesting. There is like NO sunlight here most of December - they call any sightings "sun breaks" - and I was getting pretty disheartened. So I tried a therapeutic light for seasonal affective disorder. Not only did my mood improve, but so did energy, and the neurocognitive testing, the results of which had been low and stable over 3 weeks, shot up by 10 points the first day, 15 points the first week of light therapy. (So if I use this daily for 5 weeks, I'll be smart?) Gotta see if there is any cognitive data for using light therapy.
Went to Yoga today, and realized that there is ototoxicity from at least one of the meds. The teacher, who has a wonderful British accent, kept telling us to roll up in a fecal ball to stretch. Sounds gross to me, but I am new to yoga. Finally I asked her - she mean "fetal ball" all this time.
Hope your are having a great time this holiday season. And taking time to give yourself and those you love your presence, not just presents.
Monday, November 22, 2010
Chemo in the rainforest
The chemo cycle continues. Trying to live life deliberately and "normally" in the context of the abrupt leaving the practice, selling the house, moving far from 2 of my kids, changing from doctor to patient role, ... it's been kinda weird.
But so much support from other people!! visiting and emailingt and facebooking and praying... THANK YOU!
So to add some normalcy, I made the traditional cookies for the kids and my brother and mailed them off. Strange even having to make friends with a new oven - cookies can be persnickety.
Anyway, after my daughter A visited and sampled them, I felt like Martha Stewart, but without a rap sheet.
Cognitive issues remain frustrating, but my doc here is interested in a research proposal I wrote up. To get neurocognitive measures throughout the chemo cycles, then see what the effects of interventions such as continuing oral calcium. An IV bolus is given just before the oxalliplatin to minimize peripheral neuropathy, but there does not seem to be anything in the literature about the cognitive effects of the chemotherapeutic agents for gastrointestinal cancers.
Anyway, I am doing a computer based test battery on myself every few days, and also doing a new york times sunday puzzle each morining - limit 45 minutes, no using the internet, oh, and a daily sudoku - timed. All I need is to add Tetris to get a measure of visuospacial effects.
But so much support from other people!! visiting and emailingt and facebooking and praying... THANK YOU!
So to add some normalcy, I made the traditional cookies for the kids and my brother and mailed them off. Strange even having to make friends with a new oven - cookies can be persnickety.
Anyway, after my daughter A visited and sampled them, I felt like Martha Stewart, but without a rap sheet.
Cognitive issues remain frustrating, but my doc here is interested in a research proposal I wrote up. To get neurocognitive measures throughout the chemo cycles, then see what the effects of interventions such as continuing oral calcium. An IV bolus is given just before the oxalliplatin to minimize peripheral neuropathy, but there does not seem to be anything in the literature about the cognitive effects of the chemotherapeutic agents for gastrointestinal cancers.
Anyway, I am doing a computer based test battery on myself every few days, and also doing a new york times sunday puzzle each morining - limit 45 minutes, no using the internet, oh, and a daily sudoku - timed. All I need is to add Tetris to get a measure of visuospacial effects.
Friday, November 12, 2010
Health and healing
Sorry about not posting in so long. Some side effects from chemo, and some laziness, and mostly missing A and D (not the ointment, the kids.)
I have started doing yoga. Great teacher, 3 days a week at the gym. It is so different from my previous approach to exercising - you know, attack the activity, pummel your body, it has got to hurt to build strength. This yoga stuff is slow and controlled. I kept waiting for the "real" exercise to begin. But it IS a workout.
So as I was leaving the gym today, I realized that my long term relationship with my own body has been pretty cold. Maybe abusive. Ignoring needs like sleep. Stuffing down lots of sodas and other caffeine to stay awake. Then stuffing myself with way too much junk food to stuff down any feelings that might try to slip out. Trying to be invisible to myself. Be a human doing, not a human being.
Since I got sick in September, I have been changing this. With some tremendous help from my sister C, get this - I am eating healthy, and sleeping at night, resting when I am tired, trying to respect my body as a gift from God, rather than a shameful burden.
Consequently, now while getting chemo, this is the best I have felt in years.
I have started doing yoga. Great teacher, 3 days a week at the gym. It is so different from my previous approach to exercising - you know, attack the activity, pummel your body, it has got to hurt to build strength. This yoga stuff is slow and controlled. I kept waiting for the "real" exercise to begin. But it IS a workout.
So as I was leaving the gym today, I realized that my long term relationship with my own body has been pretty cold. Maybe abusive. Ignoring needs like sleep. Stuffing down lots of sodas and other caffeine to stay awake. Then stuffing myself with way too much junk food to stuff down any feelings that might try to slip out. Trying to be invisible to myself. Be a human doing, not a human being.
Since I got sick in September, I have been changing this. With some tremendous help from my sister C, get this - I am eating healthy, and sleeping at night, resting when I am tired, trying to respect my body as a gift from God, rather than a shameful burden.
Consequently, now while getting chemo, this is the best I have felt in years.
Saturday, November 6, 2010
2/3 of the family is together!!!
It has been so sweet to have A and D here. all we need are E and L with us. God willing, that will be at Christmas. A and d are at the store right - so i have a few minutes to type.
Wait - I can make some FLAs of the kids (four leter acronyms) - LEAD or DALE or DEAL or...
So it's day two of second cycle of chemo.
The acute neurotoxicity is worse this time around - sharp needle like pains in fingers and toes with and cold or with touch, and who knows what it is doing to my mental status. So typing is an electrifying experience today.
So back to the story of how I got here, part 2:
So with a week's notice from diagnosis of colon cancer to diagnosis of uterine cancer to a colon resection last year, with seeing patients during that week, wrapping up loose ends at work, helping my family and friends deal with whatever may come, I could safely be in denial myself.
And family and friends WERE so there for me. I will never forget the may kind acts from you all during that time. Like S and K at the office jumping in above and beyond the call of duty, keeping things going office wise - they were great to me and kind and professional with my patients.
In the hospital my niece came in during an abdominal dressing change. She saw the incision - an upside down question mark, the bottome looped arund my belly button. around my belly button. She said "a question mark - she's the Mysterious Doctor! No, it is upside down - La Doctora Mysteriosa!"
4 weeks later I was able to go back to full time work, and grateful for this. But then 2 weeks later, a robotic radical hystrectomy. Then back to work after 2 weeks. In both cases - all the lymph nodes were negative -over 30 of 'em total. And no evidence of metastasis. So losing weight and exercising had a better prognosis for preventing recurrence than chemo or radiation.
Oh, the kids are back - and i don't want to miss any any time with them. Bye.
Wait - I can make some FLAs of the kids (four leter acronyms) - LEAD or DALE or DEAL or...
So it's day two of second cycle of chemo.
The acute neurotoxicity is worse this time around - sharp needle like pains in fingers and toes with and cold or with touch, and who knows what it is doing to my mental status. So typing is an electrifying experience today.
So back to the story of how I got here, part 2:
So with a week's notice from diagnosis of colon cancer to diagnosis of uterine cancer to a colon resection last year, with seeing patients during that week, wrapping up loose ends at work, helping my family and friends deal with whatever may come, I could safely be in denial myself.
And family and friends WERE so there for me. I will never forget the may kind acts from you all during that time. Like S and K at the office jumping in above and beyond the call of duty, keeping things going office wise - they were great to me and kind and professional with my patients.
In the hospital my niece came in during an abdominal dressing change. She saw the incision - an upside down question mark, the bottome looped arund my belly button. around my belly button. She said "a question mark - she's the Mysterious Doctor! No, it is upside down - La Doctora Mysteriosa!"
4 weeks later I was able to go back to full time work, and grateful for this. But then 2 weeks later, a robotic radical hystrectomy. Then back to work after 2 weeks. In both cases - all the lymph nodes were negative -over 30 of 'em total. And no evidence of metastasis. So losing weight and exercising had a better prognosis for preventing recurrence than chemo or radiation.
Oh, the kids are back - and i don't want to miss any any time with them. Bye.
Friday, November 5, 2010
Round 2 of Chemo
Back at the 7th floor - great view from the chemo unit - the view is nice, the clinical staff are friendly and professional yet relaxed.
The first week after chemo was not too bad, and this past week was wonderful - brilliant fall colors, and actual blue sky most days, perfect biking weather. And the most very wonderful thing is that my daughter A and my soninlaw D are visiting. I don't know the etiquette related to using their full names in a blog, but most of you know them already, and know that they are wonderful.
So 2 weeks ago, after the first chemo, we went to the library. I asked the woman at the desk if they had "Newcomer's guide to Portland" - she checked the computer, then said "No, but we do have "Newcomer's Guide to the Afterlife."" Bruce pointed to the chemo pump at my side and said "this is her first day of chemo." Silence. Then stammering. So I told her about the blonde who came into the library..."
Tuesday, November 2, 2010
too beautiful today to whine
I should continue the history of how I got here, but it is just too hauntingly beautiful today - cool - 60-70 degrees (that's Fahrenheit, Lisa), foggy, the colors of the leaves are like somebody over brightened the technicolor... perfect! Toto, we're not in Chandler any more...
Today's medical status - day 11 of the 14 day chemo cycle.
OK, so the treatment plan is this. 3 or 4 14-day cycles of 3 days infusion, followed by 11 days of allowing the chemo to do its thing. Then if the liver lesion shrinks, i get surgery to remove it totally, then 3-4 more cycles...
Chemo, at least for me currently, is really not as bad as it used to be. In the olden days, you know, like the 1980's, when I was a med student and resident, it was hellish. Days of painful iv infiltrations and destroyed veins, nausea, becoming a human barf-atron, horrible gut pain, profound fatigue. Thanks to Emend (great name, you know, like emesis-end) and ativan and Oxycodone and dexamethsone, etc, and the invention of an implanted port in my chest wall that leads to my superior vena cava - none of these problems. And I have been exercising daily. Doc told me to.
The main thing I have experienced are some mood issues from the dexamethasone those first days. luckily I never have had mood problems before. Oh, and ...what is it.... uh...cognitive issues. Word finding difficulty, unable to stay on a task to save my, oh look out the window! no longer the paragon of multitasking.
Changed colors of the blog page - the black was meant to be sophisticated, but it looked too depressing, too "she looks so life-like" kinda thing.
The main feeling I have is one of grace, of feeling very loved and protected. By God, by family, by friends. It is so so nice.
Today's medical status - day 11 of the 14 day chemo cycle.
OK, so the treatment plan is this. 3 or 4 14-day cycles of 3 days infusion, followed by 11 days of allowing the chemo to do its thing. Then if the liver lesion shrinks, i get surgery to remove it totally, then 3-4 more cycles...
Chemo, at least for me currently, is really not as bad as it used to be. In the olden days, you know, like the 1980's, when I was a med student and resident, it was hellish. Days of painful iv infiltrations and destroyed veins, nausea, becoming a human barf-atron, horrible gut pain, profound fatigue. Thanks to Emend (great name, you know, like emesis-end) and ativan and Oxycodone and dexamethsone, etc, and the invention of an implanted port in my chest wall that leads to my superior vena cava - none of these problems. And I have been exercising daily. Doc told me to.
The main thing I have experienced are some mood issues from the dexamethasone those first days. luckily I never have had mood problems before. Oh, and ...what is it.... uh...cognitive issues. Word finding difficulty, unable to stay on a task to save my, oh look out the window! no longer the paragon of multitasking.
Changed colors of the blog page - the black was meant to be sophisticated, but it looked too depressing, too "she looks so life-like" kinda thing.
The main feeling I have is one of grace, of feeling very loved and protected. By God, by family, by friends. It is so so nice.
Sunday, October 31, 2010
Saturday, October 30, 2010
Why the blog?
I was asked to write about my life since the onset of colon cancer. So...
Summer 2008 - exhausted, worried for my oldest brother CE - who spent most of that summer in the hospital in AZ. Working too many hours. Loving my work, but missing too much time with my own family, and trying to be there for CE at the hospital, help run interference for creditors and doctors and help him negotiate the maze of medical land.
New heart murmur. Cardiac workup normal. It must be the stress.
My brother died on 8/31/08. It must be the grief.
My mom died 12/27/08. It must be the grief.
April 09 - heart pounding walking up the stairs - even more exhausted. Cannot even hike to the start of the trail head of Piestewa Peak. Cannot imagine living another year like this, I tell my husband.
Dr. Lucas checked labs - hemoglobin was 6.2. Not good. At all. Should be twice that much.
May 18, 09 - diagnosed with colon cancer. May 26 - diagnosed uterine cancer, too.
Summer 2008 - exhausted, worried for my oldest brother CE - who spent most of that summer in the hospital in AZ. Working too many hours. Loving my work, but missing too much time with my own family, and trying to be there for CE at the hospital, help run interference for creditors and doctors and help him negotiate the maze of medical land.
New heart murmur. Cardiac workup normal. It must be the stress.
My brother died on 8/31/08. It must be the grief.
My mom died 12/27/08. It must be the grief.
April 09 - heart pounding walking up the stairs - even more exhausted. Cannot even hike to the start of the trail head of Piestewa Peak. Cannot imagine living another year like this, I tell my husband.
Dr. Lucas checked labs - hemoglobin was 6.2. Not good. At all. Should be twice that much.
May 18, 09 - diagnosed with colon cancer. May 26 - diagnosed uterine cancer, too.
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