Free and clear!

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

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

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 “café 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!

(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

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!

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

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

Tretament Plan

Greetings All!

It's still a bit uncomfortable to spend much time in front of the computer, so I've been slow to respond to all your encouraging messages, but it makes me so happy to hear from you all. Thank you!

I met with the oncologist, a young woman (I'm getting old enough now that doctors really start to look like Doogie Howser to me) who grew up in the Twin Cities and went to the University of Minnesota, so she is perfect for me! She confirmed that we do not need to do radiation which is more excellent news since it will shorten the treatment time and I'll avoid the extra complications of that treatment (including that radiation/reconstruction don't play well together).

I do, however, need to do four rounds of chemo, starting in early October. Each round is about three weeks apart, so that will take me to the end of the year. I plan to start out the new year in perfect health -- in January I turn 50, and in February John and I will celebrate 20 years of being together, so there is much to look forward to.

And in that list of things to look forward to is connecting with each and every one of you very, very soon!!!

Much love,
Kerstin

Exceptionally happy news!

Pathology back-- the nodes are clear!!!! The tumor was smaller than they anticipated (yay!), and it was far enough away from the chest wall that there is a chance I won't need radiation. They are calling it stage 2. The other breast showed "pre-cancerous" cells, so it's a very good thing we did the prophylactic mastectomy on that side-- don't want to go through this surgery twice! Tomorrow I see my surgeon for a follow up, then will meet with the oncologist in the afternoon to see what her treatment recommendations are. And I imagine I'll meet with the plastic surgeon soon too--he started the reconstruction during the first surgery but there are still quite a few steps to that process.

I have felt your prayers and good thoughts through every moment of this process and will continue to be carried on that flow through the remaining steps of the journey to HEALTH! Every good thought is gratefully appreciated.

Xoxoxoxox
Kerstin

Mystery flowers!

Still resting and healing... I suspect I'll see my doctor in the next couple of days to get drains removed and hear more about the plan of action. Nothing on pathology yet. I'm just enjoying my rest!!!!

I received the most gorgeous bouquet of roses yesterday from flowers.com. They came with a nice note about recovery, but it was not singed and I couldn't find any indicators on the packaging as to who might have sent them. So thank you, mystery well-wisher! They are absolutely beauuuuuuuutiful!!!!

xoxoxo
Kerstin

Original blogger back in semi-action

Hi Everbody,

First, thank you SO very much for all the kind wishes. It really gives me strength to know that you are all on my team in this march toward health. As you can imagine, I have quite a backlog of emails/phone calls/correspondence, and I do plan on touching base with everyone at some point this week, but until I get a chance to reach out to you each personally you can rest assured that we are doing very well!

I spent most of the weekend in front of the TV catching up on landscape design shows (got to get ready for our 2.6 acres!). I feel like a small garden tractor has run over my chest, and don't have a broad range of movement in my arms, but all-in-all the pain is manageable. I even went for a couple of short walks yesterday. My chest is all bandaged up like a mummy, and Johnny is an exceptional nurse, dealing with all the messy parts. Our lives are pretty simple in this little apartment and we're loaded with yummy food (thanks to John's mom and sisters), so all-in-all we're quite well taken care of. At this point all we need are continued good thoughts, so keep them coming!

As for the next steps, we await the pathology report which will give us a lot of information and set the course for follow up treatment.

Much, Much, MUCH love to you all!!!!
Kerstin

Resting at home...

John here again,
Kerstin is now resting at home. She's not yet up for phone calls as she's in a little bit of pain and tired but everything is good.

Out of surgery...

Hello, guest blogger John here.
Kerstin's out of surgery and in recovery. I should be able to see her in a bit. Everything went well but we're now back in a waiting mode to hear what the lymph node biopsy has to tell us.
We really appreciate everybody's good thoughts and we'll have more updates soon.

Surgery!!!!

Things move slowly, then things move QUICKLY. Surgery is now scheduled for tomorrow, Friday the 6th at 2:30pm. WOW. I'm soaking in all your good thoughts and prayers, so please keep them coming!!!!

Love,
Kerstin

Excellent news!

Based on the MRI and CT scan, the neurologist is very confident there is no cancer in the skull/brain. He thinks that what is showing up on those pictures is probably Padgett's disease or Fibrous Dysplasia, neither of which really concerned him. In fact he is so confident that he is not proceeding with the biopsy. YAY!

I haven't spoken with the breast care team yet, but I have to assume this means we're back to plan A, surgery and follow up treatment. I never thought I'd be so delighted at the possibility of surgery, but I am. Today's news opens the door again for cure (as opposed to management), so that is what I am focusing on.

I KNOW with every fiber of my body that the good thoughts and prayers that have been coming my way are helpful in every possible way, and I am eternally grateful. There are still many steps in this journey, but I feel truly strong because of the support and love I'm receiving from far and near, so thank you, thank you, THANK YOU!

Heading down to Redwood City for our appointments this morning, John and I turned on the radio, and this is the very first song we heard...

Three Little Birds
Rise up this mornin',
Smile with the risin' sun,
Three little birds
Each by my doorstep
Singin' sweet songs
Of melodies pure and true,
Sayin', "This is my message to you: "

Singin': "Don't worry 'bout a thing,
'Cause every little thing gonna be all right."
Singin': "Don't worry (don't worry) 'bout a thing,
'Cause every little thing gonna be all right! "

Bob Marley is RIGHT!!!!!

xoxooxxoxo
Kerstin

Weekend Respite

John, Andy (the dog), and I spent the weekend at Lassen National Park, camping next to a burbling river and under an incredible wash of stars. It was a lovely way to spend the weekend, and also to celebrate out 17th wedding anniversary!

As there is no traditional gift for year 17 (like pearl for the 1st and silver for the 25th), I previously  joked that it was plumbing supplies (we are the midst of designing/ building our new house -- just got the septic permit!). Given the recent state of things, maybe it's really new breasts... :) All joking aside, the real gift is obviously the love and support we are receiving from our family and friends, and even the friends and family OF our friends and family. There is nothing like a health crises to make one realize the absolute grace within which we reside. I can't thank you enough for keeping us in your thoughts.

Tomorrow, the MRI and consult with the neurologist. I suspect the only news that will come of this is a date for the biopsy, which I hope they can conduct post haste.

xoxoxox
Kerstin

New tests

Well, every day it's new information that makes me feel like we know less and less...

Because the area in question is in my skull, they need a neurosurgeon to do the biopsy. For some reason that doc wants another MRI done so he can plan the biopsy. So, new MRI is scheduled for the 4th of September, and then I guess they'll figure out when they'll do the biopsy.  I'm going to push back on my oncologist and see if there is anything he can do to move this forward more quickly, but I get the feeling the mechanisms of health care are stickier than I want them to be.

I can't tell you how much your comments here, private emails, prayers and general good thoughts to the universe help to buoy me up. THANK YOU THANK YOU THANK YOU!!!!

xoxoxo
Kerstin

Surgery postponed

The CT scans show something "suspicious" so they want to do a bone biopsy. Meantime they are postponing surgery. I appreciate each and every good thought, so please keep them coming!!!
xoxoxoxo

Update on tests

So, as is often the case with medical tests, there is nothing conclusive just yet. They want to do another test to get even more information, so stay tuned... and I REALLY appreciate all the good healing thoughts. XOXOXOX

Crappy News

I still have a hard time saying it out loud, but writing is a tad easier... I was recently diagnosed with breast cancer. Crap.

Here is what John and I know so far:

• The biopsy shows it's ductil carcinoma, but the docs have some concerns that it may also be lobular
• I'm scheduled for surgery on Thursday, August 29th. It will be a bilateral (double) mastectomy.
• They want to do some additional tests in the next week or so to see if it has metastasized (escaped to other parts of the body). If so, we may delay surgery and go right into chemo. 
• The next week's tests and the post-surgery pathology will determine the stage. So right now let's pray that the pesky critter has been (and continues until surgery to be) happy just hanging out in the left breast. 

I'm managing to keep a fairly good attitude; I figure there's no use being hysterical over the unknown. That said, the enormity of the  path I may be treading does occasionally wash up and overwhelm me.

We are slowly sharing the news. I know so many of you have been on this journey, and others like it, that I know I'm in good company. Plus, we joke that my family is good at growing things -- just between my two parents we have three cancers and a brain tumor. But the best part is they have kicked butt every time and everyone is happy, healthy, and thriving. I plan to continue that streak.

So please stay tuned. I'm certain there will be many ups and downs in the coming months, but hope that ultimately we'll have only the best news.

John, Andy, and I appreciate your thoughts and prayers so very much.

xoxoxox
Kerstin