Finished up my last chemo session last Monday (got a certificate of completion and five stickers to prove it!) and had the usual suspects of residual effects for the last week, but that is ALL OVER NOW!!! Got the report from my doc today that my white blood cells are in the normal range, and the red blood cells a bit low (but that is to be expected) so onward we go!
According to my oncologist, there are no more tests to do--no more tracking, checking or looking. I now move into a 5-10 year phase of adjuvent (word-of-the-day!) hormone therapy. Why, you may ask, do they do follow up treatment if the surgery showed that the cancer had not spread? Well, I guess there is a teeny tiny chance that some cells may have slipped by undetected, so they use chemo and hormone therapy just in case. I have been having long chats with my cells, and feel confident that any that do no belong have been "re-purposed" for use elsewhere in the galaxy. But I will take my pills, say my daily gratitude, and think happy thoughts for the next 40+ years just to make sure. At some point early in the New Year I also have a follow up MRI on my spongy skull just to get an ultimate confirmation the the problem they saw there last fall is Padget's Disease.
The last steps in the process are reconstruction-related. I'm scheduled for surgery February 4th, which oddly, is the 20th anniversary of my first date with John. (Do you think he would have asked for a second date if I'd said, "How would you like to spend the day 20 years from now in the hospital waiting room?") Though I don't really relish another surgery, I will be happy to get this one under my belt as the "stunt boobs" (the saline-filled expanders that were put in post-mastectory) are not all that comfortable and I miss the luxury of long nights of uninterrupted slumber...
I want to take a moment to say a very special "thank you" to the love of my life, my knight in shining armor, and the number-one nurse on the planet, my Johnny. He always treats me like a queen, so I honestly couldn't imagine him being any more supportive, but he really shouldered the burden of keeping the household running, me fed, the dog walked, countless doctors' appointments attended to, and one or two (or many) spontaneous Ben-and-Jerry's runs. He's due a little pampering, so that is my plan for the New Year. OH! And he's even growing proxy-hair while mine is missing! He's turning into quite a shaggy hippy... his hair must be nearly an inch long now!!!!
So now imagine me standing at the podium with my golden Free-and-Clear award/statuette in my hands thanking each and every one of you personally, by name. And then imagine me giving you a big old hug. And then imagine that I'll be doing that soon in real life, because that is the plan. Every day of this journey has been buoyed up by the support of family, friends, and their friends... and most specifically, YOU!
At this point I don't think there is a need to post here any longer, so I think I'll let this blog reach its timely end. I am, however, starting up a new blog about our soon-to-commence home building adventure (see The Lone Oak Project at: http://loneoakproject.blogspot.com), so check it out from time to time and see the fun unfold.
Until I see you next, know that I love and appreciate you, and wish good health for you and yours for all your years on Earth.
oxoxoxox
"Free and clear, free and clear..."
Monday, December 16, 2013
Monday, November 25, 2013
3/4 of the way there!
Had 3rd chemo a week ago, and nadir panels today are great. One more to go in December and I'm done with chemo! The symptoms this round were about the same as the last (meaning very few... YAY!), though with more fatigue. I wasn't able to sleep for 3 days in a row and the effects started to show in that I just wasn't functioning well cognitively. Was making stupid mistakes and really couldn't add 1+1. Plus was a wee bit emotional and erratic. OK -- more so than usual... ;)
I've said it before and I'll say it again: I just don't know how parents deal with the lack of sleep. Let's just say that that the no-kids plan was right for me. The women in my family are all champion sleepers. On a drive from Minnesota to Utah once my sister once slept the entire 24 hours. I don't think she even got up to use the restroom. She has kids now and they seem to be thriving so I guess she's using up that backlog of Zs she collected for so many years. Though I'm not sure how she survived my early years, my night-owl mother solved the problem by the time I was in kindergarten; she bought me an alarm clock and went back to bed!
And speaking of mothers, those of you who know my mom know that she has long been a fan of the bandana headscarf. It's rather a signature piece for her. Now that I have no hair I too have taken a liking to the kerchief. She's probably 10+ years younger in the photo above than I am now, but some of you with eagle eyes may be able to spot the family resemblance. I personally scare myself when I walk past a mirror... "When did Mom get here???"
Anyhoooooo, I digress... I can see the end of the tunnel, and I'm really looking forward to this process being complete. Thanks for hanging in there with me!
xoxoxoxoxo
Kerstin
I've said it before and I'll say it again: I just don't know how parents deal with the lack of sleep. Let's just say that that the no-kids plan was right for me. The women in my family are all champion sleepers. On a drive from Minnesota to Utah once my sister once slept the entire 24 hours. I don't think she even got up to use the restroom. She has kids now and they seem to be thriving so I guess she's using up that backlog of Zs she collected for so many years. Though I'm not sure how she survived my early years, my night-owl mother solved the problem by the time I was in kindergarten; she bought me an alarm clock and went back to bed!
And speaking of mothers, those of you who know my mom know that she has long been a fan of the bandana headscarf. It's rather a signature piece for her. Now that I have no hair I too have taken a liking to the kerchief. She's probably 10+ years younger in the photo above than I am now, but some of you with eagle eyes may be able to spot the family resemblance. I personally scare myself when I walk past a mirror... "When did Mom get here???"
Anyhoooooo, I digress... I can see the end of the tunnel, and I'm really looking forward to this process being complete. Thanks for hanging in there with me!
xoxoxoxoxo
Kerstin
Tuesday, November 12, 2013
Televised Distractions
Nearly a year-and-a-half after taping completed, Cafe Racer finally aired John's episode -- as the premier of the new season!
For those who may not have heard, in 2012 John assisted his buddy Patrick Bell in retrofitting a T3 Moto Guzzi into a “cafĂ© racer,” a style of motorcycle with its roots in 1960s British rockers and the motorcycle series filmed them. Last week we joined about 100 people at a restaurant in Alameda to watch the premier. And by "watch," I do mean "watch." It was nearly impossible to keep a room of 100 people quite enough to hear the dozen or so TVs, so we had go to John's sister's house later in the week (we don't have cable TV) to see what he actually said! It was lots of fun (though they did get a bit overshadowed by the other story line, which included a Hollywood actress and an appearance by Jay Leno). You may be able to catch re-runs on the Velocity channel. Bravo, John!
And much thanks to Loretta for the photos!
For those who may not have heard, in 2012 John assisted his buddy Patrick Bell in retrofitting a T3 Moto Guzzi into a “cafĂ© racer,” a style of motorcycle with its roots in 1960s British rockers and the motorcycle series filmed them. Last week we joined about 100 people at a restaurant in Alameda to watch the premier. And by "watch," I do mean "watch." It was nearly impossible to keep a room of 100 people quite enough to hear the dozen or so TVs, so we had go to John's sister's house later in the week (we don't have cable TV) to see what he actually said! It was lots of fun (though they did get a bit overshadowed by the other story line, which included a Hollywood actress and an appearance by Jay Leno). You may be able to catch re-runs on the Velocity channel. Bravo, John!And much thanks to Loretta for the photos!
Tuesday, November 5, 2013
(Raph) Nadir Report
Round two of chemo, complete. I'm half-way there!
Had my infusion last Monday, and still felt fine by Wednesday afternoon, when suddenly I was overcome by the need to take a 2-1/2 nap. Luckily, while the fatigue is perhaps a bit greater this time, the other side effects were so minimal that if I wasn't looking I probably would not have even noticed them. I really could not ask for anything more. Hallelujah!
This fantastic outcome may be due in part to not only the thoughts and prayers of all my dear people, but also the healing powers of the prayer shawl my dad brought me from a group at his church, the Knotty Quilters. This ol' heathen appreciates the power of prayer, and I am grateful by the generosity of these folks who don't know me from a hill of soybeans.
I had my nadir bloodwork done yesterday, and the chemo pharmacist, who monitors these things, said my Blupersophengolophies were lower then they might want, but that my Xelonphiltrodites were even better than expected. As you can tell, some of the medical terminology goes over my head and down the block (presumably finding home with someone who understands), but he ended it all with a big smile on his face saying all was great, so THAT'S what I'm taking with me this week.
In an attempt to pay forward all the love and support that is coming my way, I'm holding good thoughts for all of you and hoping that you find yourself the recipient of a lovely surprise or unexpectedly fantastic outcome all of your own. And if you find yourself in a darker place in life, know that I am sending you my thoughts and prayers for happiers times on the very near horizon.
Love,
K
Had my infusion last Monday, and still felt fine by Wednesday afternoon, when suddenly I was overcome by the need to take a 2-1/2 nap. Luckily, while the fatigue is perhaps a bit greater this time, the other side effects were so minimal that if I wasn't looking I probably would not have even noticed them. I really could not ask for anything more. Hallelujah!
This fantastic outcome may be due in part to not only the thoughts and prayers of all my dear people, but also the healing powers of the prayer shawl my dad brought me from a group at his church, the Knotty Quilters. This ol' heathen appreciates the power of prayer, and I am grateful by the generosity of these folks who don't know me from a hill of soybeans.
I had my nadir bloodwork done yesterday, and the chemo pharmacist, who monitors these things, said my Blupersophengolophies were lower then they might want, but that my Xelonphiltrodites were even better than expected. As you can tell, some of the medical terminology goes over my head and down the block (presumably finding home with someone who understands), but he ended it all with a big smile on his face saying all was great, so THAT'S what I'm taking with me this week.
In an attempt to pay forward all the love and support that is coming my way, I'm holding good thoughts for all of you and hoping that you find yourself the recipient of a lovely surprise or unexpectedly fantastic outcome all of your own. And if you find yourself in a darker place in life, know that I am sending you my thoughts and prayers for happiers times on the very near horizon.
Love,
K
Sunday, October 27, 2013
Shaggy-Do
Even with my new short cut, I started shedding quite a bit this week so decided a proactive haircut was needed. I started with a lovely pompadour/mohawk look, and I must say I rocked it (though the photo does not do it justice). I've decided that after I get through treatment I'm going to have a mid-life crisis during which I sport age-inappropriate hair-dos. Shocking purple, spikes... that sort of thing. Nothing like a spot of cancer to instigate a "I don't give a rat's a** what anybody else thinks I look like" attitude! Let's see if I can still manage that frame of mind when I'm completely bald... ;)
I've heard that sometimes family members will also shave their heads in solidarity. Since "shorn" is John's typical look, he's decided to go the opposite direction; he's not cutting his hair until mine starts to grow back. I'm not certain I'll be able to survive that -- I already think he looks like a shaggy hippie.
My dad and step-mom have been here all week which has been fun though I've been somewhat hampered by throwing my back out. I had visions of hiking all over Sonoma County with them and getting my strength back before my next chemo treatment (tomorrow), but mostly we've done short little jaunts. They stayed in their Airstream on our land (they got to stay on the land even before we did, dagnabbit!), and they have had everything they need thanks to the ongoing kindness of our new neighbors, especially Bill & Cheryl, and Steve & Carrie, who let them hook up to both water and power. What a luxe life!
I made it through round 1 of chemo with flying colors and even my oncologist was impressed with how limited the symptoms were and how quickly I was able to rebound, so I'm crossing my fingers and toes that round 2 goes just as smoothly. Onward!
I've heard that sometimes family members will also shave their heads in solidarity. Since "shorn" is John's typical look, he's decided to go the opposite direction; he's not cutting his hair until mine starts to grow back. I'm not certain I'll be able to survive that -- I already think he looks like a shaggy hippie.
My dad and step-mom have been here all week which has been fun though I've been somewhat hampered by throwing my back out. I had visions of hiking all over Sonoma County with them and getting my strength back before my next chemo treatment (tomorrow), but mostly we've done short little jaunts. They stayed in their Airstream on our land (they got to stay on the land even before we did, dagnabbit!), and they have had everything they need thanks to the ongoing kindness of our new neighbors, especially Bill & Cheryl, and Steve & Carrie, who let them hook up to both water and power. What a luxe life!
I made it through round 1 of chemo with flying colors and even my oncologist was impressed with how limited the symptoms were and how quickly I was able to rebound, so I'm crossing my fingers and toes that round 2 goes just as smoothly. Onward!
Tuesday, October 15, 2013
The Bad Blogger is Back
Perhaps "bad" is a bit strong, but the Extremely Tardy Blogger is very accurate. Currently, my computer time is somewhat limited so I've mostly spent it on work, but really... a month without a post is waaaaaay too long. My apologies for the lengthy post.
SO! Last Monday the 7th was my first chemo treatment. It went very smoothly, though took about 4 hours since it was the first one and they had a lot to explain to me. The process itself is easy -- I just got hooked up to an IV, and sat around while it dripped in. I did a healing meditation, did some visualization, chatted with John, and zoned out.
I had help from various healing tchotchke friends and family have sent me, including: a beautiful scarf from John's mom (which received several unsolicited compliments!); a Zuni fetish healing bear made from Picasso granite (in the picture, he is covered with corn pollen; according to the Zuni, "When you offer corn to your fetish, in return you will be blessed."); a cheerful daisy bauble; a poem by Phillip Boothe called "First Lesson"; and my always-ready-for-a-hug Cubebot Julien (this is what he looks like when he is in cube mode: http://www.brilliantpuzzles.com/assets/images/Areaware/Cubebot_Julien_2.jpg). And of course, I also had the incredible assistance of thoughts and prayers from far and near.
The day after chemo I felt fine, but days 3 and 4 found me nested in the sofa. My stomach was sensitive (but no nausea), my mouth was a bit rough (it's made up of rapidly dividing cells, which the chemo kills), and I was tired, but honestly the effects were not any stronger than the flu might be so I consider myself quite lucky. By Friday I was feeling much better, and though I'm still getting my strength back I've felt better each day. I also had to do five days of self-administered shots to stimulate the growth of blood cells, so had some achy bones and a bit of a fever, but again, nothing worse than if I had done something physically taxing.
Johnny spent the weekend at a straw bale building conference (we'll start a blog about THAT process soon!), and my Three Amigas, Kelly, Loretta, and Jane, came up from San Francisco to Kerstin-sit. They came loaded with incredible food and trashy magazines, and not only kept me entertained and comfortable all weekend, they also did household chores and doggie duty. I felt like a slightly sleepy princess, and we all decided that we shouldn't wait for an excuse like chemo-care to treat ourselves to a fun weekend together, so hope to do it again soon.
Monday (yesterday), I went in for the "nadir" blood work. Nadir means "low point" and they want to make sure I'm back on an upward trajectory. So, yup, the blood cells were a bit low, but nothing to be concerned about. The next step is approximately two weeks more of recovery and then the next round of chemo on the 28th.
Unfortunately, today I threw out my back, so THAT is causing me some pain, but luckily for me I some some good pain pills at my disposal. My dad and his wife Nancy (and the dog and the new kitten) arrive in their Air Stream at the end of this week, so I'm hoping I'm in fighting shape to keep up with them by that time. (Who am I kidding; even when I'm at full steam keeping up with them is difficult.)
Continued thanks for the emails, cards, flowers, and just plain good thoughts. I'm sending my best wishes to each and everyone one of you, and hoping they flow out to your family and friends too.
oxoxoxox
Kerstin
SO! Last Monday the 7th was my first chemo treatment. It went very smoothly, though took about 4 hours since it was the first one and they had a lot to explain to me. The process itself is easy -- I just got hooked up to an IV, and sat around while it dripped in. I did a healing meditation, did some visualization, chatted with John, and zoned out.
I had help from various healing tchotchke friends and family have sent me, including: a beautiful scarf from John's mom (which received several unsolicited compliments!); a Zuni fetish healing bear made from Picasso granite (in the picture, he is covered with corn pollen; according to the Zuni, "When you offer corn to your fetish, in return you will be blessed."); a cheerful daisy bauble; a poem by Phillip Boothe called "First Lesson"; and my always-ready-for-a-hug Cubebot Julien (this is what he looks like when he is in cube mode: http://www.brilliantpuzzles.com/assets/images/Areaware/Cubebot_Julien_2.jpg). And of course, I also had the incredible assistance of thoughts and prayers from far and near.
The day after chemo I felt fine, but days 3 and 4 found me nested in the sofa. My stomach was sensitive (but no nausea), my mouth was a bit rough (it's made up of rapidly dividing cells, which the chemo kills), and I was tired, but honestly the effects were not any stronger than the flu might be so I consider myself quite lucky. By Friday I was feeling much better, and though I'm still getting my strength back I've felt better each day. I also had to do five days of self-administered shots to stimulate the growth of blood cells, so had some achy bones and a bit of a fever, but again, nothing worse than if I had done something physically taxing.
Johnny spent the weekend at a straw bale building conference (we'll start a blog about THAT process soon!), and my Three Amigas, Kelly, Loretta, and Jane, came up from San Francisco to Kerstin-sit. They came loaded with incredible food and trashy magazines, and not only kept me entertained and comfortable all weekend, they also did household chores and doggie duty. I felt like a slightly sleepy princess, and we all decided that we shouldn't wait for an excuse like chemo-care to treat ourselves to a fun weekend together, so hope to do it again soon.
Monday (yesterday), I went in for the "nadir" blood work. Nadir means "low point" and they want to make sure I'm back on an upward trajectory. So, yup, the blood cells were a bit low, but nothing to be concerned about. The next step is approximately two weeks more of recovery and then the next round of chemo on the 28th.
Unfortunately, today I threw out my back, so THAT is causing me some pain, but luckily for me I some some good pain pills at my disposal. My dad and his wife Nancy (and the dog and the new kitten) arrive in their Air Stream at the end of this week, so I'm hoping I'm in fighting shape to keep up with them by that time. (Who am I kidding; even when I'm at full steam keeping up with them is difficult.)
Continued thanks for the emails, cards, flowers, and just plain good thoughts. I'm sending my best wishes to each and everyone one of you, and hoping they flow out to your family and friends too.
oxoxoxox
Kerstin
Thursday, September 19, 2013
Pre-chemo Hair Cut
When I was little, my mom kept my hair short.
There was the requisite childhood mishap with scissors (you should have seen the doll),
and at the age of 5 I told my mom I wanted long hair.
By second grade, I had established my "look."
The length vacillated from below my shoulders to down to my waist, was sometimes layered and sometimes blunt cut, there was a decade or so of bangs, and many years of Lucile Ball red, but I'll spare you photos because for the vast portion of the last 42 years this creature-of-habit had essentially the same hair cut.
Me this morning:
But guess what? Chemo is going to rid me of this not-so-glorious mane, and truthfully, it's probably time for a change anyway. So rather than finding foot-long dreadlocks in my shower drain a month from now I've opted for something new. And I LOVE it!
After treatment it will probably take me 8 months to regrow my hair to even this length, so I may just stay short-and-sassy. As we were wrapping up the appointment, I asked my hairdresser how often she gets women going from long hair to short, and she said, "Not often. And most of them don't laugh through the entire process... by this point they are usually wailing that they want their long hair back."
Not me. And I'm going to continue to laugh through the entire process... ;)
xoxoxox
Kerstin
There was the requisite childhood mishap with scissors (you should have seen the doll),
and at the age of 5 I told my mom I wanted long hair.
By second grade, I had established my "look."
The length vacillated from below my shoulders to down to my waist, was sometimes layered and sometimes blunt cut, there was a decade or so of bangs, and many years of Lucile Ball red, but I'll spare you photos because for the vast portion of the last 42 years this creature-of-habit had essentially the same hair cut.
Me this morning:
But guess what? Chemo is going to rid me of this not-so-glorious mane, and truthfully, it's probably time for a change anyway. So rather than finding foot-long dreadlocks in my shower drain a month from now I've opted for something new. And I LOVE it!
After treatment it will probably take me 8 months to regrow my hair to even this length, so I may just stay short-and-sassy. As we were wrapping up the appointment, I asked my hairdresser how often she gets women going from long hair to short, and she said, "Not often. And most of them don't laugh through the entire process... by this point they are usually wailing that they want their long hair back."
Not me. And I'm going to continue to laugh through the entire process... ;)
xoxoxox
Kerstin
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