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.