Rainy Night in Chicago.

Night is falling.  Black rain clouds are close outside my windows.  The thunderstorms and lightning are dancing along the lake.   This morning was beautiful as we rode our bikes.  I have worked up from riding my bike 40 miles the first two weeks I was back on the bike to between 80-90 miles each of the last two weeks.  This morning we rode up the Chicago lakefront north almost 20 miles and then back.  Just about three hours with pit stops.  I am tired and my legs are sore (in a good way). 

I still have local pain and discomfort from my chest surgeries.  And doctors visits every few weeks or month but it is manageable.  The nerve damage may last up to two years.  I have decided there is no sense dwelling on it.

C, a survivor friend, summed up better than I could my current thoughts about my cancer, "I may get cancer again.  I can't help that.  But I'll know that I did everything I could to prevent it."  That is my current strategy.

I have been reading a book she suggested, a book called AntiCancer, A New Way of Life by Dr. David Servan-Scheiber.  It talks about how we should live and eat.  I almost wrote, "with cancer" but it really talks about how we should live and eat all the time.  More variety of fruits and vegetables (organic if possible).  Organic dairy.  Little meat.  Wild Fish.  Green tea.  Pomegranate juice.  Oh and for good stuff, dark chocolate with a minimum of 70% cocoa.  Little or no white sugar.  No hydrogenated oils.  Little white flour.  If you are interested I'd say read the book.  It is a great read.

I have been adapting my diet to incorporate these healthy and cancer fighting foods and eliminate the things that don't have a positive impact.  For those who know me, they know I usually eat pretty well.  I have watched my diet for 4 or 5 years.  But this has required extra concentration and effort for me.  I haven't had coffee since last Wednesday. 


I'm eating right.  Exercising.  I am adding my yoga back this week.  And keeping cancer at bay.  

Thank you for sharing my cancer journey.  I'm signing off this blog for now.  I will be preparing for the Apple Cider Century, a 100 mile bike ride the end of September.   I will be working on other writing projects and I am back to work full time.  I appreciate all of the prayers, support, suggestions and cheering throughout the last 8 months.  It was an enormous comfort to me as I wrote that I knew you were all there waiting, listening and caring.   I wouldn't have made it so easily without you.

I am looking forward...

Recovery .. different measures

Recovery:  I'm sure it's different for women, men and different people of different ages.

I know what it means to me:

Yesterday I put on perfume.
Today I put on lipstick and wore a pair of strappy sandals to work.
This morning, I danced in the bathroom while my favorite song was playing.

So, I am recovering.  Looking forward to a bike ride this weekend.

Writing and Yoga- a new project

Today is a day of new beginnings for me.  I have a doctor's release to start exercising today.  The limitations are I can exercise but I can't lift anything and can't put any pressure on my chest.  Piece of cake! So I will be at a biking class this afternoon, spinning my legs in little circles on a stationary bike in the dark while the music is playing.  I will be sweating happily.  I ate way too much delicious food at a business meeting yesterday (those brownies perched on the table just in front of me were unbelievable, I couldn't resist) so I will be happy to be able to burn some extra calories.

I have also started a new project today.  21-800-5.  A confluence of readings and events over the past few days got me thinking and stewing.  I'll take you through my thought journey.  One, Yogic Muse, a yoga writer I read blogged about this project. It is a community project for 21 days to write 800 words each day and do yoga 5 times a week. 

Two, I read an entry I read this entry yesterday from the Daily OM called Translating our Feelings.

It talks about how when we approach new things we might think we are scared about something but really it is excitement we feel.  Hmmm.

Three, I had a conversation with some friends about the trauma of the last six months.  Cancer is a tough road.  I've written about the testing, diagnosis, surgeries, chemotherapy and some of the millions of doctor's appointments (ok, so it seems like millions).  Cancer is tough not only for the physical hardships but for the mental ones as well.  There are so many life-altering conditions.  One of the comments from one of the doctors in the last few weeks was very specific, "don't make any major decisions in your life right now."   That in itself set me to thinking.  I think people act erratically as they sit in this tailspin of cancer.  I know in the last few weeks I have thought that chucking everything and living on a beach or on a mountain with just my family would be the right choice.  Of course that money thing always gets in the way!  I have chalked that up to just needing a vacation.  I have sat here and tried to imagine what other people do as they recover from cancer.  Quit their jobs? Move?  Change their friends?  I can't think of them, just a lack of imagination this morning.  But I have felt more and different kinds of stress in the last few months than I have ever felt before. 

So I joined this writing-yoga project in time to start today. New Project I decided to join so I can explore my writing a bit more deliberately.  Writing takes me to a wonderful place.  It calms my mind and heart.  For me, every time, starting to write is scary.  As I walk toward my desk, I feel my heart pounding in my ears and my skin gets hot.  I am not sure why.  Once I get there I am engaged.  It is about capturing the essence of truth as I see it at that particular moment.

Am I scared because I am putting myself out there for so many people to see?   Is it because it isn't safe?  I'm not sure why.  Is it because we are scared to be successful?  If I, or anyone who takes risks, is scared of how it will change their current life?  Or am I scared at all and is it like the writer wrote about in the Daily OM, is it really excitement I feel?  I think true fulfillment in life comes in identifying what you want and then figuring out a way to get those things in your life.  I have done it, in my work and in my life but each time requires diligent effort and thought.  Each time, I have had to make a deliberate decision, make a goal and then work hard to meet that goal.  It doesn't come easily to me.  I know some people that it comes easily to and I am just a little bit jealous of them.  I also know people who have not been willing to take any risks at all and have lived a sheltered life.   Of all them, I know many happy people but is there a difference between happiness and fulfillment?  I want to explore all these thoughts in my writing. 

The yoga is a bonus.  I went to a great meditation class with a Buddhist monk sponsored by a local hospital that I have been meaning to tell you about for the last few weeks so I hope to weave his story into a blog entry or two.  

I started my first novel when I was 12.  I remember sitting on the basement stairs in our house in suburban Chicago.  The typewriter was perched in front of me precariously.  I typed two pages.  I remember coming up and proclaiming prophetically to my mother, "I don't know enough to write yet."  I want to see if I know enough now.   I will stretch and write both personally and fictionally over the next 21 days.  I won't make you suffer through all of it.  But if I think it might be interesting, I'll post some of it here on my blog.  I'm looking forward...

By the way this is my first day and my first 917 words...

Summer Rain

It seems more like spring than June.  All weekend in Chicago bursts of rain have come and then just as quickly gone.  Yesterday I sat on our balcony most of the day and I marveled at how lush and green the trees are in Lincoln Park.  I drank coffee and watched the soccer and baseball games off in the distance.  I am resting.    Well resting for me.  Today I cleaned my home office and filed stuff that has been piling up for a couple of years.  I also laid out the plans for how to train for the Apple Cider century bike ride that I want to do in the fall.  I am not allowed to exercise yet.  No yoga.  No biking.  No lifting anything over 10 lbs. 

I am amazed at how tired I am.  Perhaps I shouldn't be surprised.  Two surgeries and twelve weeks of chemo since December 14th.  I used to get up in the middle of the night and read, or write but now I never get up.  I wouldn't say I sleep but I don't get out of bed.  I am struggling with working all day.  Yet I am not in my "chair" anymore.  You know, there was a big, black leather recliner I lived in post surgery and during chemo.  I haven't sat in it in a month.  Not even after surgery 12 days ago.   Weekend afternoons I lie on the couch and watch cycling races on television and nap.   Cycling races are very long so I usually don't miss much.

I am worried that the tiredness is menopause.   I am on Tamoxifen for the next five years to prevent a recurrence and it guarantees menopause.    But I think that mostly it has caused hot flashes.  I don't have terrible hot flashes, just 20 or so a day.   I only wear short sleeves shirts and layer everything.  At night, I crawl into bed cold, cover up with a sheet, blanket and comforter.  And every half hour or so I wake, adding or subtracting layers.  Usually I wake, flipping the covers off, then wake every 15 minutes adding a layer back on. 

I wish I could go away for a few days.  It's not possible right now.  But tonight I felt like we were on vacation.  We walked to a neighborhood place, a romantic dinner at a little French bistro and I sat with the open windows at my back while it rained.  I could hear the car tires hissing through the water on the street and people racing, squealing through the showers.  I sat and enjoyed the soft music and the gentle conversations of the room. 

Dinner was delicious, fresh summer fish.  I'm not sure when that happened but things taste normal again.  I snacked on a couple of ginger snaps yesterday and I thought while I was eating them, "now why did I live on these for a month?"  I celebrated that things taste normal again tonight and had my favorite Profiteroles, which are little puff pastry shells stuffed with ice cream and covered in hot fudge. 

I'm looking forward ....

Bike The Drive

Bike the Drive happens every Memorial Day weekend in Chicago.  The city closes down the entire length of Lake Shore Drive.... roughly 20+ miles along the lake... and turns it over to cyclists from 6 a.m. to 10 a.m. and it is a riot.  There are kids with parents, tandems, reclining bikes and people who have their bikes decorated. 

As I sat and watched it from my window in our apartment I thought what a difference a year makes.  Last year, we biked 10 miles with our son and some friends of his and then hosted a breakfast open house for 25.  It was a great way to spend the day.   I love cooking for company.

I wish I was riding today as it is a beautiful day; sunny with no clouds in the sky and the park is filled with green tree tops.  The water looks like there are diamonds shimmering on the surface.   The temperature is in the 70's.  I do not have a doctors OK yet after my surgery to get back on the bike (not that I am well enough anyway, I have been up on and off since 3 a.m. in pain and feel like I will not be better for another couple weeks )  Ken ran out for a quick ride up north to Hollywood and back and our friends Ruth and Jonathon have gone south downtown on Bike the Drive to the museum campus.  The four of us will be here for breakfast, which I am cooking.    




It has been a hectic week, Monday evening while I was just home recovering from surgery,  Ken got ill from a kidney stone and Jonathon took him to the Emergency Room while I sat home and waited.  He finally returned at 4 a.m., on painkillers with lots of interesting stories about cops in the ER, and motorcycle accidents. 

I am surprised by how much pain I have been in.  I thought this surgery would be simple and that recovery would be easy.  I have some nerve damage on one side and am having lots of pain.  I started to have allergic reactions to the pain killers again so I wobble between pain or pain killers combined with Benadryl which puts me straight to sleep.   Then yesterday I got a cold.  Today Ken woke up with one.   Talk about too much drama.



So we are having a quiet holiday weekend, hopefully one with lots of rest and without any trips to the hospital.  I did run out to the store for a roast.  Even though it is warm, a good pot roast with potatoes and onions will make the apartment smell good and will provide comfort food as we look forward to feeling better. 

Back under the Knife

Today, I underwent surgery to work on reconstruction of my breasts.  Here is the latest on my construction project! 

At the initial massive excavation on December 14th , they inserted some place holders that expanded to make room for my new TA TAs.   Now that I am expanded and healthier, they have to swap those expanders out for the real silicone TA TAs.  Thank goodness as the equipment felt like two hockey pucks (sorry had to throw a little Blackhawks humor in--at least they didn't knock my teeth out!). 

Surgery happened this morning at 7:30 a.m. (see they even have construction hours).  And while they were in there they fixed a dog leg (I swear that is what they call it).  Moved one Ta Ta up a floor (the ground was soft, it had slipped down).  And then they took some dirt (ok, fat from my tummy) and used it to fill in the landscape where there were some holes where they had scraped down to the bone.  The procedure was successful, they say.  Who can tell with the swelling and bandages!  

I was home by early afternoon.  In a lot of pain so we upped the dosage of pain killers a bit and now I feel good.  The doctor said no biking for a week but I think he was kidding.  No lifting and no jogging for 60 days.  The jogging he does not have to worry about! 

A week sounds a little aggressive, even for me.  So I will take it day by day and start with gently yoga stretches in a week.  That worked well last time.  This is perhaps the last procedure I need so I am excited and looking forward. 

Good News

Last week I had a follow up appointment with my surgical oncologist.  After the exam, I asked him if he thought I was cancer free.  He answered cautiously, "I think you are cancer free for now."

I have been replaying it and celebrating in my brain all week.  Please celebrate with me.

Kedging

I am re-reading a book, called Younger Next Year for Women by Chris Crowley and Henry S. Lodge, M.D.,   to kick start me mentally back into a healthy lifestyle as I recover from cancer.  There is an important term in it,  that really struck a chord for me.   Kedging.  It is a nautical term that means to move (a ship) by means of a line attached to a small anchor dropped at the distance and in the direction desired. (Merriam-Webster)   So what does that mean for sailing?  On a windless day, if you really need to go a particular direction on a sail boat, you take a little kedge anchor and put it on a dinghy and you row out the direction you want the boat to go.  You go as far as you can and then you drop and secure the kedge anchor.  Then the people in the boat PULL the boat to the kedge anchor.   It is done by brute force. 

These authors first wrote a book called Younger Next Year that was all about men growing older (or how not to).**  I felt like I was missing something after Ken chuckled his way through it, so I read it too.  Then a few years ago, they wrote one for women and I read that one.  The book tells us pretty much what we should know being healthy as we age but in a way that boils it down to some basic rules and easy takeaways.  And it has some great stories. It gave Ken and I a vocabulary to use with each other to talk about healthy aging. It has been at the heart of our trying to get healthier over the last few years. 

Younger Next Year encourages you to kedge.  I have made up variations of the word.  I am a "kedger".  I live my life to Kedge.  So, what does it mean to kedge in life?  It is setting a goal and then pulling yourself to it, come what may.  Ken and I have been kedging trips since we first read the book. Last winter ('08-'09), Ken and I made plans for an early '09 summer bike trip in N. Carolina.  The highlight was riding a couple of hundred miles in 5 days.  In case you didn't know, N. Carolina has lots of hills!  It forced us to put in a lot of miles in Chicago and the hills of Wisconsin last spring.  I remember one particularly morning in May on the Chicago lakefront,  I swear there were only 6 people that morning running and biking in the freezing drizzle.  We were kedging.  We were biking 22 miles as the sun rose, able to see our breath, before work, so we would be ready for our trip.  

I am a kedger, (perhaps to the chagrin of the people who work with me).  I set goals and then I figure out how to get there.  My personal short term kedge is to ride the Apple Cider Century in late September in Michigan.  100 miles in one day.  The brochure is stuck with a magnet to my white board.  Hold me to it.  You can join us, they offer long and short rides and lots of families come.

This morning, it was sunny and a very brisk 45 degrees in Chicago, staying in bed seemed like a luscious option.  Instead, we went and rode 12 miles alongside the glistening lakefront.  Yoga this afternoon.  I am working on my kedge.  The kedge gets me out of bed.  My long term kedge is to ride bikes with Ken across the country.  The Apple Cider gets me one step closer to that.

Kedge with me.  I am looking forward.


**Thanks to Nick for suggesting Younger Next Year all those years ago,  I  I have given it to people and they have given it to people and so on.  It is a life changing book and you started the positive wave.

Pain and Memory

"We do not remember days, we remember moments."  

I have decided only 7 weeks after chemo that I can't remember the pain of the chemo or of surgery.  That is a very good thing.  I have an example that only women will feel, sorry but it is the only thing I can come up with.  I remember the surgery and chemo the same way that I remember going through labor. .  Women who have had children will get this I think.  Or perhaps others who have gone through an accident, surgery or perhaps even a heart attack will get it.  My memory says labor was awful.  And the pain was real and at moments agonizing.  I remember that much.  But I don't really remember the physical pain of labor, all these years later.  It doesn't touch me.  The memory thankfully has slipped away.  I can remember moments but I don't remember the pain of that moment.  With labor, it slipped away within a day or two.  Perhaps because of sleep deprivation!  Or perhaps with the joy of a newborn.

The pain of chemo and the surgery is like that.  I can look back and say, "the bone pain was the worst."  But I don't remember what that felt like.  Even though I was only done 7 weeks ago, the physical memory of the pain has slipped away.  That ought to be reassuring to any one who has to go through something like this. Our brains are wonderful things and somehow they protect us from the physical memory of the pain while we are awake. 

This came to over the last few days because of the nightmare.  Only in my dreaming memory did the physical feeling of the pain resurface.   I wonder if it is like this for others.  And last night I slept fine.  I'm looking forward ...

Nightmare

My life is divided right now.  I have been in the office the last few weeks 6 hours a day and am just getting back into the rhythm of "working".  It's not that I haven't been there for the last three weeks, it is just that I am finally getting my concentration and focus back.  Who knew you could lose that?  It's my role to drive the business forward and I finally feel like I am doing that again.  When I am home, we are getting back into our more normal routine of family dinners, and family things (like laundry!).


Weekends I have been devoting to getting into better shape.  During the week, I just don't have the energy to do both. This last weekend, we biked both mornings.  The first day I biked so slowly, I am surprised I didn't fall over.  And when I got home I had to lay on the floor and recover before showering.  Follow that up with a long Saturday afternoon walk.  Why was I so purposeful? The real answer was I wanted to try a huge FiveGuys cheeseburger and fries and couldn't in my mind justify the calories and splurging without a huge workout day to support it.  (The burger was great!)

Sunday morning, we were back on the bike and I felt better.  The answer is that it is always tough to get into shape, the cancer just makes it harder.  You have to want it.  And I do. My plan is to continue to alternate between during the week and weekends.  But everything is a little off plan today. 

Last night I had my first nightmare about having breast cancer and surgery.  I woke up crying this morning.   I am an optimist.  I have not had even one moment where I have doubted that this will be fine.  That I will make it.  That I will be cured of cancer.  But reliving the surgery in my dreams was terrifying.  It made today a little longer.  It made me a little more tired.  I struggled to get to work this morning.

I am looking forward and I will plan on more restful sleep for tonight. 

Up the Road a piece

My father's father used to tell us when we were very young and driving with him anywhere that where we were going was up the road a piece.  He would never answer "the question".  The "How long until we get there?" question.   Every place was up the road a piece.  


I went for a follow up visit to the oncologist yesterday.  Six weeks since my last chemo session.  Three weeks since I was sinking, now I am on the mend.  Or, some days I am on the mend.  I went to the doctors with a list of questions in hand.  My overall sense is that somehow I have to make friends with my body again. It has changed so much in more ways than I can really share (you don't really want to hear me discuss menopause do you?).  So I had issues to discuss with the doctor. Two issues related to menopause and one issue I'll review with you: why am I having so much joint and muscle pain.  I feel like I have arthritis and every muscle hurts every time I use it. 

Now, let's be clear.  My doctor does not tolerate my drama and my humor very well.  Ok, he doesn't handle them at all.  He ignores them.  So, there I am asking questions sincerely, from my little green index card clutched in my hand.  "Why do I have so much pain in my joints?"  This at least he has an answer for, "your bone marrow is rebuilding."  But then I ask the killer follow up question.  "How long will this last?"  His answer, "a while."  


On to muscle aches and pains.  Why, I ask.  How long?  He volleys it back, am I taking any drugs?  An occasional Advil, I answer.  Does that help, he counters.  Yes.  Ok, then do that when it hurts, he answers.  I feel like saying, DUH!  But I push gently, how long will this last.  You'll feel better in a while, he says again.  A while.... 

It isn't until today that I realize he is answering symptoms and I am looking for a longer term answer.  Perhaps he knows and doesn't want to answer.  Perhaps for every person it is different and he can't answer.  But the question is still there on the edges of my mind.  When will I feel better?  Will I ever be back to normal?

And the answer is in "a while" or as my grandfather would say, "up the road a piece".

ART

I was in D.C on business from Sunday to Tuesday night.  When I arrived in DC on Sunday I had an extra couple of hours before my meetings began.  So I did one of my all time favorite things.  I went to the National Gallery of Art.

Sunday was a beautiful spring day.  70 degrees and sunny.  Unbelievably mild.  DC is wonderful in the Spring, so much warmer than Chicago.  I haven't been able to exercise as much as I would like.  I took off my jacket as I walked and then I got so warm I took off my scarf. 

I always try to visit the National Gallery of Art when I am in DC.  I tend to be an East building girl if I am there for a short visit.  The east building is where they have special exhibits and it is a more modern building.   There were two modern exhibits and a special Spanish exhibit of oil paintings and sculptures called "The Sacred Made Real",  of Spanish work made between 1700-1800.

In the modern exhibit I saw a Jackson Pollock painting (whose work I have never really appreciated) called Ritual painted in 1957.  It just sucked me in.  It was so complicated. And an Andy Warhol painting of the Campbell soup can.  Not the Tomato soup, this one was Chicken Noodle soup.  And it was so clear and straightforward.

I saw a Salvador Dali painting of The Last Supper that was one of the most beautiful paintings I have ever seen.   The light and detail.  There is something to me about turning on my Ipod to classical music which drowns out the murmurs and other conversations, and soaking up art.  It makes me feel light.  The beauty of art brings peace to my heart. 

I'm going to find something beautiful to look at today to keep that lightness of spirit going.

How Brains Work

I am back to being busy.  Just like most people.  We are working, taking care of our children, helping in our communities.  Sometimes we are busy staying or getting healthy.  Somewhere along the line I learned that being busy was important.  I learned that getting things accomplished meant I had value and worth. 

Over the last 25 or 30 years I got addicted to being busy.  Internally I thought, if I had nothing to do I wasn't worth anything to anyone, even to myself.   At times busy thoughts attacked my brain to the point where I joked that I had monkey mind.  I swore there were monkeys careening around in my brain unwilling to let me settle down and be at peace.  Or maybe that is just the ADHD.

Cancer changed things.  Being sick caused me to look at being busy and time differently. This last week as I have been plunged back into work, I see those busy feelings chattering like monkeys, just at the edge of my sight, threatening to come back in. I am doing my best to keep them caged and out of my mind.

When I was in treatment, it was much easier to treat each day just as it was.  To sit and watch the sun rise and set from my chair.  To breathe and deal with the pain and understand my body and reflect.  I rarely had thoughts of wash that needed to be done or dishes that needed to be cleaned or projects that deserved more time than I am capable of giving at work.

How can I just be (not do!) and have value?  I think that is a tough lesson in American culture.   I am imperfect, scarred and damaged.  We are all.  What am I afraid of? How come when I was sickest and I had the most time I was most accepting of myself? 

I keep thinking that I have to rush to get done.  I have to get enough money to retire (and isn't that looking more difficult every day!), I want to reach my growth goals for my business, eat healthy and be active physically (which takes work at any age!) and the list goes on.

I realize that the I am my best on my bike.  There is no hurry.  On the bike, I am in the moment.  Of course, there is no rush because I'm a very slow bike rider.  It just is.  I am the same when I do yoga. 

For now, I am not looking forward.  I am living in the moment.  I will appreciate all that I have and that I am.  I will try to keep the monkeys in the trees in the distance.

Web Resources for Breast Cancer Patients

I haven't written all week because I worked and I forgot how time consuming work is.  I worked what seemed like all day, every day last week and then on Friday I went to a funeral (the father of a friend).  Man, work is exhausting!  I had forgotten.   Or perhaps work was not this hard before. Add into the week two doctors appointments (one of which I canceled), a couple of association meetings with drive time, a dinner out and a husband with a bad cough and cold.  

All of this left little time to think about the fact that I am a recovering cancer patient.  Not to say that it didn't come up.  Everywhere I went most people notice I am very bald.  I paint on eyebrows and eyelashes so most people don't notice that.   But people who know me say I look tired.  Perhaps because I am.

I find again and again, everyone talks to me about someone who was just diagnosed or has breast cancer.   It seems a little overwhelming but gives me opportunity to share what I have learned.  I realize I read more than most and I did lots and lots of research about treatments and options for care because it made me feel more in control of my situation and my life.  So, I decided to post a few links here that I found most helpful to give other people a shortcuts.

I asked all sorts of questions of my doctors, I couldn't find all the sites I used but now I found a list of questions that was almost identical to the list I put together.  Interestingly, it was written by my oncologist.  Here is the link: Breast Cancer Questions to ask your Doctors.The entire website has lots of information from him about breast cancer.  I wish I had found it earlier.

In addition, I had a great guide to the exercises to do after surgery that several women have told me they didn't have access to from their hospital.  My surgeon from Northwestern Memorial gave me this one. I thought they helped me feel better but (here is my disclaimer) I would certainly suggest you talk to your doctor  post-surgery before starting to stretch and exercise! Stretching and regaining resiliancy after Breast Cancer Surgery


I hope this helps one person.  I spent the weekend resting and I'm looking forward to next week with a plan for a better balance so I can get some exercise time mixed in with work.

Just a final note:
This week my thoughts are with my friend Grumpy.  He couldn't make a meeting I was at as he has had a mini-something (tests to be done).  I missed him as he has been a constant supporter sending me funny videos or uplifting emails throughout my entire illness and I was hoping to see him and thank him.  So thanks Grumpy, Get Well Soon! 

The Health of the Patient, not the Diagnosis

My goal all week was to work 1/2 days and rest to build up my strength.  Thursday I worked a 1/2 day.   Not exactly the 1/2 day I started out thinking I would work.  It was more like the 1/2 day my Dad used to talk about when I was young.  I used to ask about working a 1/2 day and he would answer, "Sure, you can work a 1/2 day, you pick which twelve hours."  

But I made it and next week I have another few longs days staring at me.  I feel a bit of a mess.  My arms, neck and back are tight.  I lift my arms to stretch and I feel like I am pulling on a string that is tied into the middle of a knot that I can't untie.  I am sure I am holding my shoulders and head awkwardly.   I actually feel awkward generally.  Emotionally, I feel like I am not on solid ground.   I feel like I am walking on a muddy path with the mud caking up on my boots slowing me down.     

My body is a mess.  My stomach doesn't work the same.  Pizza doesn't taste good (this is perhaps a good thing).  Exercise doesn't feel the same.  My skin isn't  the same.  Driving feels different.  My balance isn't the same. I certainly don't look the same.   (Please don't take this as whining, this is just explaining my new "normal").


I am still on the journey of a cancer patient.  There is no road map and my journey is not done.  When you get cancer, there are millions of sites that tell you about the diagnosis, the treatment, picking a doctor, options for surgery and types of chemotherapy, side effects of chemotherapy.  But there aren't many helpful web sites for what to do when you are done. A friend described it as doctors treating the diagnosis and not your health.  That feels right.  I am "treated".  The medical community doesn't treat my getting healthy as anything they have a stake in.  They have "finished" with this stage and in a couple of weeks I see the doctor to start medications to avoid a recurrence. 


It is just by chance that the LiveStrong blog this week sent an article about a doctor who had breast cancer and talked about her recovery period as rehab. 
http://www.livestrong.com/blog/blog/how-julie-survived-cancer-then-survived-treatment/

Her article talks about how with stroke patients, heart attack patients and many other types of illness there is a much more coordinated post-care treatment plan.  With cancer, you just finish.  That is where I am right now.  I am finished with the treatment part of my journey but I am not sure what is next .  This would have been a chemo week.  I am filled with joy that I didn't have to go through another round.  I am filled with joy that now, three and 1/2  weeks later, I have physically been as low as I will have to go (hopefully for a long time to come). 

I am wonderfully, beautifully alive.   I'm looking forward and finding my way there slowly. 

A Regular Doctor: Neutrophils

Monday morning.  I went to see a new general internal medicine doctor at Northwestern, where my cancer doctor and my cancer surgeon practice.  It helps to have someone there that can see all my medical records and tests.  Before Cancer, I didn't have a "regular" doctor.  A couple of times in the last few years if I got a bad cold, I went to the office of ...my big sister... friend...family: Chris.  All right, I am not sure what to call her.  We have spent holidays with Chris and her husband for 25 years.  She has stopped and brought dinners and visited almost every week while I have been sick.  She is the closest thing to family that I have that is not family.  You have those relationships too I am sure. Chris is also a general internal medicine doctor. 

Tuesday, I got my blood results back from doctor visit Monday.  My white count is 2.5.  Normal is 4-11.  From a blood test a year ago at a health fair, my white count was 5.8.  So, I have less than half of my normal ability to fight off infection.  The doctor sent me an email.   She, Dr. U (my new general medicine doctor) talked to Kelly, my oncology nurse, and said I can go back to eating raw fruits and vegetables.  For the last several weeks, it was cooked vegetables and only fruits with the skin peeled (like oranges, bananas, apples and pears).  In her email she said it is all right because my neutrophil is 1100. Of course, I had no idea what Neutrophils even were.  So I looked them up.  Here is an excerpt from Medicine.net

Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.  In practical clinical terms, a normal ANC is 1.5 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that the patient's activities do not need to be restricted (on the basis of the ANC).

So at 1100, my Neutrophil is safe but not normal.  No sushi yet.  I am still washing my hands and using hand sanitizer 7 times a day.   I'm not touching many people voluntarily.  No shaking hands.  No hugs unless I am really really sure you aren't sick! 

In the tests, my Vitamin D level came back very low.  I had stopped using all Vitamins and supplements while on chemo.  But perhaps my Vitamin D level was low before and I just didn't know.  With blood results in hand, I got the go ahead to start taking vitamins again and the doctor started me on a prescription of Vitamin D for 12 weeks to boost my Vitamin D level. 

I have a sore throat.  For a while today, my voice wavered.  I am just not used to talking so much!  No one who knows me will think that is true, but it is.  Looking forward.  

Weird Chemo issues for $150

I am back to work.   Yesterday I went to a doctor's office visit first and then to the office for four hours. But today from 9:30-2:30.  The longest stretch I have worked at the office in months.  The wig didn't last more than hour or two.  They seem too tight and I got a brutal headache.  Thank goodness for all the cool scarves, turbans and scarves you can wear now.  I bought mine from two sites www.4women.com and http://www.headcovers.com/headwear/hats-turbans/

It did feel strange to come home carrying my hair in my hand.   I wonder if spending the money on the wigs was a waste.  So headaches are one of my weird chemo issues.

Other weird issues: Sunburned eyelids.  I have almost no eyelashes (or eyebrows for that matter).   When I went out for a walk with my dad for 30 minutes, I burned my eyelids.  We were only out for 30 minutes and I couldn't quite figure out why I was in so much discomfort.  That was Thursday.  I laugh now.  It was kind of funny.  My eyes also tear up alot.   Ken asked what was wrong this morning.   I was sitting wiping tears off my face.  Nothing.  I'm fine.  And I really was.  My eyes just water.

Sunburned lips.  Sunday it was beautiful in the morning.  Another sunny, spring day in Chicago (until noon, like I said Chicago).  It was almost 65 degrees by the lake.   I took my first bike ride since surgery.  15 minutes out and 15 minutes back.   A nice first effort.  This time I was smart enough to wear sunscreen and dark sunglasses.  But I forgot about my lips!  So two days of sunburned lips were next.  Are you noticing a trend here?  I'm going to have to get this sunscreen thing going.

No hair in my nose.  My nose runs a lot at random times.  I don't understand how all these pieces of our body really work together.  The evolution of why every piece is the way it is.  No hair is a big deal. Who knew?

But I am off all prescription pain or other medicines.  I found out last week that the lovely Ativan I was taking at night (which I thought was a mild sleeping pill) was really like Valium!  Probably just as well I didn't know that.  So I quit taking that and didn't sleep for a couple of days.

A couple of Advil for the headaches and we'll see how working in the mornings for the rest of the week goes. 

Tackling the tough questions

The other night I had this random thought that I needed to go take a shower and wash my hair.  Then I remembered I had no hair. 

My last chemotherapy session was two weeks ago.  I am still losing my eyelashes but this week I am feeling better.  It is sunny and 70+ degrees in Chicago so I took a walk this afternoon with my Dad who has been visiting.   Next week I am going to work 1/2 days in the morning at the office instead of in my pj's at home.  When I work from home with only an occasional visit to the office it doesn't create a lot of questions.   When I have gone out, there are always odd looks and raised eyebrows.  I don't think the looks are offensive.  Everyone is curious.  I have been thinking a lot about the looks and the questions.  How do I answer them?  Do I answer them? 

Which leads to the even more basic question of how do I describe who I am?  How do I describe what I am going through?  How do I describe my progress? How is the experience of having cancer changed my life?

Am I a cancer survivor? Am I still battling cancer?  Am I cancer free?  The one thing I know is that I am a mix of emotions.  Or perhaps a mess of emotions is a better way to put it.  I have been so deep in battle with being sick, I haven't processed this yet.  When my mind drifts to those thoughts I push them away and tell myself to just hang on.  I try to work on getting through feeling sick.  I concentrate on eating right for today.  Then I try and rest and get enough sleep. 

But I know that soon enough I have to tackle the tough questions. 

Locks of Love

This is my beautiful friend, Robin.  I've mentioned her family before in a blog posting I wrote about getting ready for surgery.   "Centered"  Dinner with her family and another family from our old block was instrumental for my mental health!  Robin is smart and able to joyously laugh at differences.   She finds differences interesting and is willing to look and it seems to me say, "all right, it is enjoyable that we are different."  People who can do that and mean it with a sense of joy are amazing.   We taught Sunday School together for a few years.  I was always the one with the detailed lesson plan. She was always the one going with the flow of the kids.  Add in Bill, a great Dad, and we were a good team.  An architect, Robin has found work that is of value to herself and the community and does it on schedule that works for her family and her kids. 

Robin showed up right after my surgery.  She brought me scarves. She went with me on the scary trip to buy eyebrow pencils and stencils.  I'd look scarier still in public right now if I didn't have those.  Robin emails me and reminds me that things are going to be all right.  She makes life seem more normal.  She helps me laugh, sometimes even about our teenagers! 

And now, she has donated her hair to Locks of Love in my honor.  Locks of Love is a charity that helps children who have lost their hair.   Robin got a great cut from Suzie at the Mario Tricoci salon in Oak Brook.  Some hairdressers have experience with how to cut for Locks of Love, Suzie does.  Robin looks great with short hair!


My heart is warm and I am feeling better day by day.  So many friends have done so much to help keep me tied to the present.  Last week, one of my (adopted) brothers joked with me that I had gone a little dark in my writing.  Perhaps.  It is scary here.  But I feel hundreds of hands and prayers reaching out for me helping to keep me from sliding too far into the dark.  Thank you. 

Lockdown

I am in lock down.   No one is allowed to touch me without washing their hands.  I am not allowed to touch anything.  No door knobs.  No visits to the grocery store.  After my last chemo session, I went to Whole Foods and picked up organic fruit just for some real fun and excitement.   Now, I can not even cut my cuticles.  No raw food.  Best not to have even salad right now.  Everything should be cooked well.  I am washing my hands 20 times a day.

I am home-bound and bored.  Bored with DVD's of TV series, bored with food, bored with movies, struggling to read between the headaches.  During the weekdays at least I can work from home and bug the people at the office with questions and irritating suggestions about things I have been thinking up from left field.  I am sure they are ready for me to come back and do some real work and leave them alone. 

My white count is low.  When I got chemo last Monday it was 4.  Normal values are 4-11.  And this type of chemo causes Neutropenia, which leads to a reduction in white blood cells.  White blood cells are what fight infections.  And the treatment for Neutropenia is a drug called Neulasta.  The typical side effects of Neulasta: bone pain, joint pain and headaches.  Not anything the doctors want to put me through again if they can help it.  And definitely not somewhere I want to go again.  I think we have all figured out if there are side effects, I will have the worst of them. 

Who knows how low my white blood count is now.  I don't know how low it can go.  Friday afternoon I started to get an infection at the site where I had my lymph nodes removed.  My scar got red and raised and my temperature started to go up.  The whole area started to swell and feel uncomfortable all the way around my back.  I still had a headache and felt like I had the flu.  I have felt like that since chemo and that hasn't changed. 

The infection started at noon on Friday.  Perhaps the infection was caused by the craziness of trying to organize and pay hospital, doctor, lab bills after comparing them to the insurance explanation of benefits and deductibles.  That activity alone is enough to make a person sick.  I paged Kelly at 3 pm.  Kelly is an APN,  which stands for Advanced Practice Nurse.  I trust Kelly.  I didn't want to wait until the weekend and even though I wasn't that sick yet, I would rather deal with her than the on-call doctor who doesn't know my case as well.

She was worried.  She wanted me to take my temperature every two hours and start on antibiotics immediately.  If the redness and swelling around the scar increased I was to call immediately.  She mentioned drawing pen marks on my body to trace the redness to see if the area got bigger.  If my temperature went up even with the antibiotics, I was to call immediately.  She mentioned getting to the hospital immediately if the antibiotic didn't work.  Now, Ken was worried. 

Thankfully, now 48 hours later the antibiotic is working.  My temperature this morning is back to my normal 97.5.  The pain and swelling are down.  Antibiotics for 8 more days.  Looking forward.

Charity begins with Friends

My industry, the call center industry, where we answer phones and provide services 24 x 7 x 365 is a wonderful one.  It is full of caring, generous and very hardworking people.  For the past 28 years, I have learned at the sides of experts.  Their advice and experience has helped me buy and continue to grow a business my mother and I started.  And in the call center world, everybody knows everybody and everybody helps everybody.  There aren't six degrees of separation, there are two degrees of separation MAX.  I've always been happy to be part of this group.  Today, I am humbled to be part of this group.

These last few days there was a user group meeting.  A user meeting is where companies who all use the same equipment or who work in the same region get together and figure out how to do things better and smarter and they do it together sharing ideas.   We share ideas even though sometimes we are competitors, it makes the industry better if we all provide better service.  This one was for the software provider that we use.  Ken usually goes to these meetings but this time he stayed home to be there for my last chemo session.

A few weeks ago, I got a phone call from a friend in the group asking me if it was all right that they were going to do a raffle to raise money for a breast cancer charity in my name.  I was flattered and a little embarrassed by the attention but said,  "of course".  In my mind, I swear he said "a little raffle".  I appreciated that they were thinking of me and were thoughtful enough to find a way to be supportive.  In my mind, they would all pitch in $5 or $10 and they would raise a couple of hundred dollars and I was grateful.

Today I got an email.  The little raffle, which was supposed to be buy a ticket and 50% went to a breast cancer charity and 50% went to the winner, ended up being big.  The ticket sales were $1810.  And the winner Susan, generously donated her winnings back to charity.  Then my vendor, Professional Teledata, matched the donation.  So $3620 was donated today to find a cure for breast cancer.

These are good tears.  Thank you all very much.  I am very appreciative to work with such a generous group of professionals and friends.  I'm looking forward to being well enough to see you all soon.

Final Chemo Treatment was administered

Chemo round 4 went uneventfully.  My friend Ellen came and hung out with me and got to see how boring it all is and how doped up they make me.  She also got to see the beautiful care that I have been getting from the great team at Northwestern.  When you first get in, they take your blood to make sure you your white count is high enough to get the chemo treatment.  Mine was pretty low 4.1.   It is supposed to be between 4 and 10.5.  So I worry that the next two or three weeks I have to stay away from anyone that is sick.  Then off to see the oncologist and who knows what they he and his resident are really looking at or checking on.  Lines from Monty Python ran through my head, "I'm not dead yet," but I didn't say anything.

It feels like I have fallen off a cliff a little bit.  I don't have a next oncology appointment.   I asked, "when will I see you again?"  I felt like it was a date and I was getting dumped when he said, "I'll see you in a couple of months". I wish they would just give me a worksheet.  Some list to check off.  I would be so much more relaxed.  See the surgeon for a follow up then, see the oncologist then, boom.  I'd know.  I'd schedule it. 

Then on to treatment.  Ellen and Ken both came for the big finale.  They pushed in some steroids, some Ativan, and some Benadryl when my side effects started kicking in.  I said goodbye to Lora, the chemo queen.  I had to tell her that as much as I liked her I wouldn't really miss her! Then we went home and I lounged around.   For now, my appetite is completely gone. But I had Ken buy cake donuts, just in case.


So many questions still.  The drugs are just kicking in. I don't think I will have an eyelash or eyebrow left after this round..  And then the climb out of drugs and illness.  One reconstruction surgery in May.   How soon will I be strong enough to exercise?  Now, I can hardly climb stairs.  And still two or three more weeks downhill.



I think it is the mega doses of steroids running through my body at 4 a.m. that has me a little worked up.  I have already done some reviews of reports from work and some email.  But I can feel the headache creeping in and so I am off to try to go back to sleep.  

Looking forward.

Chemotherapy, Menopause, Death and Adversity

It is pleasant to look out the window today and see blue sky.  It is only momentary, we are expecting more rain this afternoon.  The last four days we have had dense thick fog in Chicago.   At times, I have not even been able to see anything out my windows fourteen floors up.  Not sure if the weather has affected my mood or all these other things swirling through my mind and body have sent me to a dark place.  What I would say globally about the last three weeks is that I have not been as sick as I was the last chemo round but I am also not as well.  I am not sure if that is understandable.  I have not bounced back like the last cycle and I still have one more to go.  

Monday is my last chemotherapy session.  Everyone else seems excited and has been very encouraging about it , like this is some sort of end.  I know that there are at least weeks to follow where the drugs will keep ripping me apart inside.  My mind swirls with the thought, "how low can you go" like my body is playing in some sort of Limbo game and I have to keep bending over backwards. The drugs are still killing cancer cells.  I can't look out there and see when I will feel good again.  No one can answer that.  Is it two months after chemo or four or six?

The chemo is forcing me into menopause.  Yesterday afternoon I cried.  Sometimes my eyes just dripped and a few times I crawled into my bed and sobbed.  By the end of the day, I was putting ice packs on my eyes to cut down the swelling.  Pathetic.

Perhaps it is menopause and the hormones crashing through my body (when I mentioned this to Ken his eyes popped open with a look of sheer terror).  Perhaps it is just that I am so tired.  I don't wake up anymore feeling rested.  Perhaps it is that my great-grandfather is dying and death seems so close right now.  Everything seems like too much. 

This morning I woke up to a quote in an email that helped me put it into perspective.  It didn't make me feel better but I am looking forward.

 "There is no education like adversity."
          Benjamin Disraeli.

Chemo Fog

Concentration is something that we take for granted.  Not me, not right now.  Right now, every hour of concentration is something that I have to work at.  This round of chemo has also brought me frequent headaches.  I am not complaining, these side effects are tame compared to the bone pain and the muscle pain of the Taxotere.  Actually,  I have a couple of weird things happening all at once right now.  My eyes and head seem to be at the center of the weirdness.

My eyesight has gotten horrible in the last month.  I am not sure what in the chemo is causing that but both nurses have said to me, when you are done you will need an eye exam.  I can't see well enough to read with my contacts, I now have to add cheater magnifying glasses while wearing my contacts to read.  It is very strange, standing in the drugstore, trying to read labels, with contacts in, my wig on and trying to put on cheaters that won't fit around my ears because the wig gets in the way.  And my reading glasses, you guessed it,  give me a headache. 

The funniest example was the other day when I was trying to open a new tube of medicine.  Well you know, that even in the best of circumstances, they make them adult proof.  The cap, which I was struggling to read,  said a variety of things.   It said, "close tightly push down and twist".  Well, I tried to do all three things at once.  I was squeezing the lid and pushing down and twisting.  It just wouldn't work.  I walked into the other room to get Ken to open it.  "How do they expect you to do three things at once," I asked.  "I can't seem to squeeze the top tightly  and push down and twist all at the same time to get it open."  Ken looks at me.  "Chemo fog," is all he said.

It was separate instructions, as I am sure you have all figured out already.  Ken opened it in a second.  Chemo fog.  It is a known side effect.  My neurons just aren't all firing.   Or maybe they have killed too many of them.  I can't seem to pull the little details out that are just sitting there on the edges of my brain.  Names, something that I was never very good at, are now impossible to recall quickly.  I have to stumble around and find them somewhere in my brain.   I always made lists but now, if it isn't on the list, it slips away for hours, if remembered at all. 

I sat through a meeting today with a prospective client and everything was clicking and firing and it went well.  But a couple of hours later, I was exhausted and you guessed it, I had a headache.  I'll take some Advil,  try to get a good nights sleep and that will heal some brain cells.

Waiting to Ride

We are blessed to have a beautiful apartment that has views of Lake Michigan.  From late November until February, the sun rises south of the building beyond.   All we get is the indirect sun over the lake in the mornings out our eastern windows.  When we can't see the sun in the morning, I feel the winter.  This year especially. 

As of this week, the sun has moved north again and we can see the glory of the sunrise.  It is always a family moment when we can feel the sun directly in the morning.  I love when I go to reach for a cup of coffee and have to turn my head away from the window so I am not blinded by the sun.   It is on purpose that I don't have window coverings on that kitchen window.  The moving of the sun and the change throughout the year help me feel connected to the earth and the seasons.

The last couple of days in Chicago have been beautifully clear, days filled with blue sky and bright spring sun.  It is a wonderful feeling.  In the morning the sun rises and the light squeezes in around the room darkening shades in my bedroom.  In the afternoon it bounces off the high-rises to the west and shines in my eyes as I sit in my chair.  I sit and feel the days grow longer.  I feel time passing and realize it won't be long before I am done with all this medical muck. 

Even with snow on the ground, I have been looking forward to going out for a bike ride.  I am crazy.  It is only 35 degrees outside.  My personal guidelines are that I won't ride outside until it is 45 degrees.  35 degrees, no matter how sunny,  is just cold.   At 35 degrees, it doesn't take but 10 minutes for the cold to leech any warmth out of your body.   I always feel it first in my fingers, toes and nose.  Quickly, you lose any feeling in them.  I am certain at this point, I won't be working hard enough or going fast enough to build up my core temperature.

I worked all week on being positive and trying to reach my goal for the weekend.  My goal was to ride outside for 30 minutes.  I successfully did two yoga classes this week for an hour each.  I am ready to clip onto my bike.  But for today, it is too cold for me.  I am waiting to ride.   

Sick of feeling Sorry for myself

Perhaps it is that I am feeling better.    Perhaps it is my spirit drowning out my body.  But I am sick of feeling sorry for myself.  I am putting on yoga clothes and on my way out the door to a very basic yoga class for one hour.  

It is going to be 45 degrees in Chicago on Saturday.  Ken and I bike outdoors once it is 45 outside.  If I plan this right, perhaps I can work myself up to a couple of miles on the bike on Saturday.  Yoga today and Tuesday evening when my favorite teacher, John is teaching.  Wednesday I could do 30 minutes on the treadmill or elliptical.  Saturday I could be on the bike, even just for 20 minutes. It won't be our usual old weekend routine of two or three hours on the bike each day but....my bike is ready.  Winter tune up done and it is ready to ride.

When I suggested this over coffee this morning, Ken stared at me.  Clearly I am looking for the pony in here somewhere.  But I am going to start this week with the positive attitude that "I can".  A friend sent me an inspirational  remake of the "We are the World video" this morning and it struck home.  With Chile and being reminded of Haiti, other people have it so so much worse.  It is good to be reminded of that when you have been just wandering from bed to chair and watching television for too many days in a row.   It is good to be reminded of it when you are feeling too sorry for yourself.

So I am off to do some gentle yoga.  I will try to be a friend to my body today and nurture and support my spirit.  And I will do the best that I can.   I hope your spirit is strong as Spring is coming.  I hope you too are striving for the challenges you want to tackle today.   I am going to make the best of my life for today.     

Practicing being an old lady

I am surviving chemotherapy.   Some days just barely.  Ok, this week just barely.  I feel weak, shaky, hunched over and old.  The core strength I came into this with is hiding.  I am sure it is the drugs ransacking the cells and it will pass.  I have faith.  People tell me I look great; I think they are being supportive but I am sure they are lying.  I know better.  I can see the dark circles under my eyes.  I appreciate the support, their enthusiasm to help me make it through this event, pass through the time it takes for me to make it out the other side. 

I am cold, I am hot.  I can't sleep.  I am so exhausted that sitting in a chair for dinner last night was a monumental effort.  My husband cares for me moment to moment changing dinner plans with no notice to match my persnickety stomach and strange tastes and meet my demands for protein and fiber so my stomach will work. 

I am a little old lady.  I walk slowly, climb in and out of the car gingerly.  Wandering delicately through my apartment,  I pick a little task to do each time I am up.  Other people open doors, bend over to help me.  This has deepened my empathy for the elderly and the infirm.  There are days you just can't do anything. 

Mostly, I spend a lot of time in this chair; sleeping and watching movies.  I dream of when I will have the strength to do yoga, ride my bike or exercise again.  I dream of being healthy, of not having the shakes.  This is one of the faces of cancer. Perhaps one of the toughest. 

Right now, six weeks seems like a long time to be looking forward.

Chemo 3 or 4 was much less eventful!

Chemo happened on Monday with a new cocktail.  And these weren't gin and tonics, bummer.   Or better yet, I would have preferred Mexican food and a beer.  No such luck, chemo cocktail it was.  Steroids, anti-nausea medicine, anti-anxiety meds and who knows what else.  Oh, yeah, those chemo drugs themselves.  C and A.  After the allergic reaction drama and dramatic side effects the last two times this time was kind of boring.

There was one scary minute when they were injecting the new chemo drug, Adriamycin through a syringe and not a drip IV bag,  Ken just had to be curious and ask why the syringe.  To which we get the answer because if this infiltrates outside of the vein it will burn up my skin permanently.  Nice.  So Lora sits and pushes it in and watches it.  Scary that they are dumping this into my body. 

We didn't even finish the whole funny movie, "Made of Honor", which I had been saving up for chemo.  The process was roughly 3 hours compared to the six or seven the last two times.  No really tough side effects yet.  They have me doped up for the next 3 days on some pretty strong anti-nausea medicine.   I just feel the nausea at the edges of my body but it isn't bad.  Headaches and lack of sleep don't really count as side effects compared to last time.  All in all this is physically a much better course of treatment (spoken optimistically day 2).  

I'm praying that it's coursing through my body kicking butt on whatever minuscule cancer cells might be left!

Looking forward.

Chemo 3 of 4 coming this next Monday

So here I am happily going along, thinking this next chemo round will be better.  I am excited about the prospect of being up and around more.  Happy to think I won't have bone pain.  No heavy steroid dosing. 

Yesterday Lora,  from the chemo ward (just my little nickname), called and said she needed to have a specialty pharmacy call me for my credit card information as she had to pre-order me a special drug.  It is hard to get, she said.  So they pre-order it and have it ready to for me to take home on Monday.   No problem, I respond.  "What's it for?" 

"Well", she hesitated.  Nausea and vomiting is the answer.  My stomach lurches.  What?    Apparently this round of chemo typically has much more nausea than the other.  I may very well be vomiting the next two weeks.  Great.  Just great.  So we go from certain bone pain and aches to potential constant nausea.  Now I'm thinking, maybe I should go back and rethink this.  Which is worse the bone pain I know or the vomiting I might know?  Maybe they think I need some help with the weight gain and this is the answer.  This is the more traditional treatment for breast cancer, so maybe this is why other people have lost weight.  I'm not seriously thinking of changing the decision the oncologist and I already made on this new process so I guess we will see.

Then I went off to get an echocardiogram and and EKG to ensure my heart function is acceptable before I start this round of chemo.  The phone rang at 11 a.m. and I was at the hospital at 1 p.m. and stayed there until 2:30 p.m.   Again I wonder how do people do it who don't have a flexible schedule?  What if you are a teacher?  Or a camera person for the news? 

So we settle in for a quiet winter weekend, watching the inspiring athletes young and old of the Winter Olympics.  I amazed at their capacity for effort, joy and despair.   I hope your family knows joy this weekend. 

A Change in Chemo Drugs

This morning I had a follow up visit with my oncologist.  But at a University teaching hospital you always see someone else first.  It could be a medical student, a fellow, a nurse or physician's assistant.  I love it when I get to see Kelly, his physician's assistant.  She is as knowledgeable as he is about most day to day treatment questions and she has a wonderful sunny personality.  She is the go to person I call with questions and problems.  But today we got a medical student.   Some days I have tormented them and not let them examine me.  It depends on if I see their hands shaking.  This one seemed pretty confident and thorough so I was patient and answered all his questions even if he didn't really understand that I was there because they called me, not because I really wanted to be there. 

I'm pretty organized so I reviewed with him my monthly calendar that lists all the medications I have taken since my last chemo.  Including things not prescribed by them like the antibiotic for the skin infection and every Advil.  Then he reviewed side effects.  I went over the two biggies; bone pain followed by muscle aches.  He then tried to rule out the other side effects.  He asked, "Any dry mouth? Any metallic taste in your mouth?"  "Of course", I replied. And the list went on.  Night sweats.  The only one I don't seem to have yet, loss of appetite.  Unfortunately.  I'm the only person in the history of time to gain weight while on chemo.  But for a while after each chemo the only food I wanted to eat was cake donuts.  I'll have to ride hundreds of miles on the bike to work those off.  And to avoid the bad taste in my mouth I have found that chocolate or Werthers Originals works best.   Basic sugars.  Interspersed throughout some days with fruit and whey protein shakes.  Dinners at home are veggies and fish or meat.  OK, I can't resist desserts.  Darn those cake donuts and desserts.

Finally the oncologist comes in.  He's growing on me.  I decided today that I even like him.  I think I will be all right with having him in my life for the next five years.  He joked as he came into the room today, "I hear you've been having a rough time of it.  I'm really not trying to kill you, you know."  I think I answered, "you could have fooled me." 

He had reviewed everything before I got there and it wasn't really a discussion.  He is changing out one of the chemo drugs,  Taxotere, for a different one, Adriamycin. So I will be on a combo called AC.  the C will stay the same, it stands for Cytoxan. 

Here is a description of the drugs that I found that makes the most sense from MyBreastCancerNetwork.com  Not sure it is the best description but it is the first time I have read something about chemo that explains it simply and clearly:

The "A" part of this "chemo cocktail" both blocks DNA production in your cells, and also inhibits the enzymes responsible for repairing DNA. Cells can't live without DNA; thus when they're deprived of it, they die (in fact, some even kill themselves when their DNA is damaged). "A" can't distinguish between cancer cells and normal cells; but because cancer cells are dividing so rapidly, it has a greater negative effect on them than on your normal cells. The "C" part of this chemo combo stops cancer cells from replicating. So between them, you have some pretty powerful agents working to destroy those cancer cells.

 This drug change eliminates the side effects of Taxotere.  I won't get either the terrible allergic reactions during the delivery of the chemo and the 9 days I was pretty much flat on my back immediately after the chemo.  The only potential side effect impacts the pumping of your heart muscle.  It happens in less than 5% of the cases.  I reminded him that perhaps as I had every other bad side effect this might happen to me.  He seems highly confident that it won't.  The heart problems typically happen with a high number of treatments (6).  So the side effect is based on cumulative Adriamycin dosage.  I will only be getting two doses.  We'll see.  I have to schedule an EKG before chemo to test my heart and make sure I am going into it healthy.   I'll let you know how it goes.  Soon I will be half done.

A Walk in the Desert: Learning to be flexible with Cancer

We are in beautiful Scottsdale Arizona.  The resort is on the North side of town.  I have never spent much time in the desert.  And here it is mid-February and it is 75 degrees.  The sun has been glaring, every picture I take has this cast of white in it from the blinding sun.  I didn't notice it on the drive in at midnight.  Then it just seemed like a river of strip malls running beside the road.  There was a continuous glitter of neon lights but everything was closed.   

Friday wasn't a big day: out to breakfast and then I needed a nap.  I was rolled up in blankets, curled up on the bed sleeping while my boys wore short sleeves and sat reading.  It didn't feel like we were on vacation until we went out to dinner.  We had booked, weeks ago, dinner at Lans at the Hermosa.  It is an old famous Scottsdale place.  Dinner is served on an elegant patio with trees with little light fixtures nestled in and stars visible in the distance.  I was worried about being cold but they had dozens of patio heaters scattered around.  It was wonderful to sit with a fire in a fire pit off in one corner. 

Day two of vacation is always better.  I don't ever find on day one that I can appreciate where I am.  I am too busy trying to get my bearings and that is even more true with cancer. I find that my short term memory is pretty bad.  But even day two when you are in treatment requires flexibility.  Day one big events: rest, then out for an afternoon drive to scout out possible future events.  Day two, out to breakfast and then we were going to go for a hike in a nearby state park.  Ken had read about an easy hike called Go John Go in Cave Creek Regional Park on the Northern edge of Phoenix.  The hike is a 5.8 mile loop that offers great views of desert flora and fauna.  In the morning, I was fine.  As we are walking out the door to hike my stomach ache started.  Before Ken had driven a mile I am asking him to turn around so I can spend more time in the room.  Three hours later, I am fine again.  Thanks to being flexible, off we go again.  As we drive by where we turned around the first time out I think, "ok, so far so good." The rest of the drive is uneventful.  The sky is blue, clear and you can see for miles, something that doesn't happen in Chicago. We arrive at the state park and start to hike.  It is beautiful, to live here I would have to research and learn a whole new vocabulary.  There are no bugs.  There are cactus that are 100's of years old that grow one inch a year.  The sun is blinding even with sun glasses.  I can see why people ride horses as we walk because nothing seems close.  You could walk forever in this desert and not get to where you can see.   At first,  I can't breathe all that well. But the hiking gets easier as we go. 

On the drive Ken says, it would have been a perfect day for a convertible.  For the first time in my life I agree that a convertible would be fun.  No hair to mess up and sting my eyes.        

Everywhere we went people stared.  I didn't bring any wigs.  Because of the skin irritation (something to do with losing all my hair) I am just wearing soft cotton caps.  People stared.  I haven't spent much time out in the last two months since surgery.  Perhaps it is being North versus being South.  In Chicago and even Washington DC, it is winter and it is no surprise if you wear a hat.  In Phoenix, unless you are a cowboy wearing a Stetson (which I am clearly not) most people are not wearing hats or scarves.  So I stand out.  I think the biker dude in the book store with a bandanna scarf was looking at me with a certain kinship until he got close enough to figure out my story. 

This is the night I scared the waitress.  I was adventurous and told Ken I wanted 1/2 a glass of wine.  It is my first wine since surgery.  Ken ordered a 1/2 bottle of wine for us to share.  But the waitress only brought Ken a glass.  So then wine person who took the wine order, gave me a glass and then waitress came and took my glass away.  So out comes the wine with the wine guy and he has to go find me a glass again.  And the waitress seems mystified and starts to take it away again.  I was laughing.   I don't know, am I not supposed to have a glass of wine during chemo?  So I blew that one.  I'm really living now!  I think waitresses don't know what to say.  They can't quite figure out how to act if you are sick.  Since most of the rest of my time the last two months has been spent in doctor's offices and hospitals when you are wearing scarves, people are much more low key in the hospital and don't look at you.  Maybe in the hospital they have more important things to worry about than what is wrong with me.

Day three of vacation was better yet.  The further in the past my last chemo session, the more energy I have.  The only flaw to that plan is that it also means the sooner my next chemo session is.  In the morning we visited Frank Lloyd Wright's compound, above is a picture of his house. In the afternoon another hour of hiking on a different trail.

Lovely.   And I feel strong and not tired after 3 miles.  No one around to stare at me. A perfect Valentine's Day.  Sweet.

Vacation and then Decisions

I've pretty much been a wreck this week.  There is something wrong with most parts of my body.  I have an infection on my scalp, stomach problems, muscle pain issues, mouth issues.   I've spoken or been into the doctors office or pharmacy daily.  Yet still I have managed to work a few hours each day.  The rest of the time, I've spent way too long watching the entire 3rd and 4th season of West Wing.  Add in a few MASH episodes each night and that is my life.  I jokingly volunteered to be put down like a dog but Ken scoffed. 

I can write this now because I feel better and I am excited to leave for Scottsdale this afternoon.  I am looking forward to 4 days in the sun.  I love the feeling of the sun on your face, that impossible brightness that burns through your eyelids even when they are closed.  Desert and air.  I haven't been out much since December between the surgery, chemo and the Chicago winter.  I am excited to breathe desert air. 

When I get back the nurse I have been working with scheduled a visit with the oncologist.  It seems that "it" isn't supposed to be this bad.  I am not supposed to be quite this debilitated.  She wants to discuss with him changing my chemo regimen.  She told me that she has a 70 year old woman on the same treatment as mine who has had zero side effects.  I am just lucky I guess.  So there are more decisions to be made next week.  What are my options for treatment?  What new side effects might these other drugs have?  Are they as effective?

We are 4 weeks and 4 days through a 12 week chemo schedule.  This trip is a pleasant break from chemo and a celebration of family.  I'll be on the road and enjoying myself.  I'm not going to think about next week and decisions right now.  I am going to breathe, eat and sleep.  I will laugh as much as I can.  I hope you enjoy yourself this weekend too. 

Out for Walk

It is sunny today and 30 in Chicago.  I've been pretty sick this week.   This poem, that I wrote in my 20's, has been in mind this week as I have struggled.  If you don't like poetry,  you'll want to skip this one.

Just when you think you can't go on
Just when you think there's nothing left inside
when there's no inner strength
you only thought is how ~
how can I make this crushing, shaking pain stop
how long will it be before the pain goes away
and you realize that the pain is ebbing with every moment
though it's crippling still
and you wrench, twist, turn
and suddenly you've twisted so your face
is warmed by the sun
and you draw strength

if only to hold away

the ebb of the rushing pain

This will be a better week, looking forward. 

Some Very Good News: second opinion on Radiation

Yesterday Ken and I went to get a second opinion from another breast cancer radiation oncologist that was suggested by the team at Northwestern.   And her recommendation is that I do NOT need radiation after my chemotherapy.  I feel a huge sense of relief to not have to have six more weeks of treatment.  I also am very thankful that I do not have to worry about the side effects that are related to radiation.

Dr. G and her team at Rush, after reviewing all my slides, reports and details, along with taking a complete medical history,  input the data into a national database that suggests risks about recurrence.  She believes my current risk for a local recurrence is about 4%.  Local radiation treats local recurrence where the chemotherapy treats systemic recurrence.  Local radiation reduces the risk of local recurrence by about 1/3.  So, in her opinion based on my personal pathology and data from the national database she used at Sloan Kettering, if I got local radiation I would be reducing my risk from 4% to 2.6%.   She felt the reduction was not worth the risks of the side effects. 

I am very relieved.  The radiation has much more lasting and negative side effects (or so they say) than the chemo therapy.  My journey just got a few steps shorter.  Thank you to all for the prayers and warm wishes.  So even though this week, I am in the throes of major bone pain, and drugged with pain medication and steroids, etc.  I am looking forward.

This summer, I will see you on the bike!

Bravery: After Chemo 2 of 4

People say that I am brave and I am not sure what they mean.  I asked Ken to tell me why he thinks people say that because I am struggling to get it.  He thinks it is because (and I am paraphrasing here) that I do what I have to do in the moment.  I don't spend time talking about the fear and worry that are sometimes inside me with other people.   I am not sure why the fear and worry don't dwell in me.  It is almost like I am walking down a road and can see them in the distance but I don't feel them in my body.  Perhaps this is the benefit of my yoga and getting more control of my breath.  Perhaps it is from my very minor meditation practice that helps me see my thoughts but not be overtaken by them.  Perhaps I need major mental health intervention.  (joking!)

Most days, I just get up and do.  I have lists in my head about doctor's bills to be paid, and appointments to be kept.  Some days, it is let's make it to the couch and watch a movie. Today was a get up and go to chemo day. 

I tried to start the day focusing on the enjoyable things.  I got my TA TA's expanded again and I spent time sharing a yoga sequencing manual with the nurse in the plastic surgeon's office.  She is a new yoga instructor and exceptionally sweet.  We talked about how hard it is to surrender and accept help from others. 


Then on to the cancer center for  the blood draw, an exam with the oncologist, then chemotherapy.  For me, chemo really stinks.  I had another allergic reaction to the Taxotere.  They had to put me on oxygen because I couldn't breathe and pump me up with more steroids and different steroids and Benadryl.  I wasn't very brave, I was gasping and repeating, "I can't breathe.  I can't breathe."    You should see what kind of drugs they are proposing for next time to try and avoid this.


I don't feel that what I am doing is all that brave.  There are other people's whose challenges are much harder.  Having a sick child with something that lasts for months and not being able to fix it, that is what I think of when I think of bravery (and stress too).

This is my body.  I get to make decisions about what is right for me.  I am making choices and plans that will keep me alive and healthy and active.  But I think I am doing the best that I can with what I have moment to moment to live.  I think for me that is an internal kind of surrendering.  One that I have not often had to face before.  I am not sure I would describe that as bravery.  I think for me the word would be serenity.  I feel serene because I have confidence in the choices I have made and am making.

Prepping for Chemo number 2 of 4

I thought I would share my first headstand since my surgery December 14th.  I did it Sunday morning after 30 minutes on the elliptical and an hour of stretching and yoga.   Inversions are wonderful and calming.  Perhaps I should do one during chemo?  Just kidding. I leave for chemo in an hour.  People have been telling me how brave I am.  I am nervous, scared and worried about side effects and what the week will be like.  So much for bravery.  As you can see, besides being bald, my outside health is fine even three weeks into chemo.  Just my insides are a bowl of Jello. 

Photo credit to my personal paparazzi and husband Ken.

Expandable Ta Ta's

During my skin saving mastectomy, I had "expanders" put under my chest wall.  These silicone bags mimic breasts.  When they were inserted they put 200 cc's of Saline in them.  So when I came home from the hospital, I was swollen and I wasn't flat.  That's about all I'm going to say about that.

So, Friday I had Saline added to my Ta Ta's.  In case you hadn't heard, I'm not calling them breasts anymore, I'm calling them Ta Ta's.  These aren't really breasts just a close facsimile.  I can feel the areas where there are seams and edges.  The final implants won't have those and are more comfortable.  These feel awkward most of the time.  Although some of that can just be the nerves recovering from the damage of the surgery.

It has been almost 6 weeks since my surgery and the muscles in my chest were finally comfortable.  The 200 lb man that has been standing my chest since the surgery was gone. The wounds are completely healed and I was ready for the next steps.

Who knew that I got to pick what size I will be?  The expanders that are in place now do exactly that: expand.  They just keep adding saline.  There are magnets in the expanders.  I went into the Plastic Surgeon's office and the nurse, also named Michelle, put a little tiny magnet against the top of my chest and it wiggled as she moved it.   Then she inserted a needle and pumped liquid in at the spot where the magnet is.  There is a special sealed area where they can insert and it stays in. At some point you have to just laugh at the ludicrousness of all of this.  And then you marvel at the medical technology that makes this all possible.

It didn't hurt much.  On one side, my nerves are still so damaged from the surgery that I didn't even feel the needle.  The other hurt a bit.  But I now have 250 cc's of Saline and am on my way to about 400 cc's (that is about what I was before, they say).

It would be entertaining and Ken and I have joked to think that they could be adjustable week by week.  Have a black tie, insert saline.  Going bike riding for the week, remove some.  The world could be an even stranger place.  But I do have to say, as I have obsessed about the new Ta Ta's for a day, it does feel better to be more normal sized. I mean, I didn't think I was even feeling bad about them before.  I thought I had more important things to worry about.  But I just feel better to not have them be quite so misshapen with the scars being so prominent.  With the addition of Saline, they are starting to look like, well, like Ta Ta's.