Saturday, February 27, 2010

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.

Tuesday, February 23, 2010

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.

Friday, February 19, 2010

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. 

Wednesday, February 17, 2010

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.

Tuesday, February 16, 2010

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.

Thursday, February 11, 2010

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. 

Sunday, February 7, 2010

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. 


Thursday, February 4, 2010

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!

Tuesday, February 2, 2010

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.

Monday, February 1, 2010

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.