Thursday, September 27, 2012

9 days post chemo

I haven't written since my first chemotherapy infusion... mainly because I have just been trying to cope.  I am receiving standard dose Taxotere & Carboplatin.  I also began receiving the herceptin that I will be getting for the next year.  The infusion itself was very easy and almost pleasant.  It was nice spending time with my husband and relaxing in the infusion room.  It went so well,  I even drove myself to my support group in Palo Alto.  No problem.  I was ready for anything....

The reality set in pretty quickly.  I won't go through all of the gruesome details, suffice to say I had some pretty horrific side effects and ended up in the emergency room on day three post chemo.  My temperature spiked but the nice people in the emergency room gave me lots of IV fluids and sent me home.  The weekend was particularly difficult - lots of nausea, cramping, exhaustion, and overall discomfort.  Think the worst flu you have ever had in your life with the added bonus of knowing that you were going to have to do this many times over.  I started to feel human again early this week.  Today- aside from feeling like I gargled with razor blades- I am feeling much better.  Some say the side effects have a cumulative effect- I am hoping that isn't true.  I am hoping that next cycle I will know what to expect and be better prepared.  I am scheduled to do this five more times.  Sunday that didn't feel doable.  Today it does.

My mantra has been - "this is temporary- and I will feel better."

I did want to share some art that I have worked on for the last week.  I wanted to create a piece of art to track my symptoms so that I can share it with my oncologist at my next check up.  The pinks and oranges represent health - the greens and blues represent sickness.  I also wanted to do this so that I could look at it and remind myself that these horrible feelings are temporary.  I will get through this.

I feel like there is so much going on in my body- that there is no way I can be a good reporter for my oncologist without some record... and being visual, this was more fun than just writing things down.  You can click the image below to download your own blank template. 
So next cycle, I have learned the importance of staying hydrated and moisturized.  I have also learned that there will be days I can do nothing- and days that I am capable of still doing quite a lot. 

Thursday, September 20, 2012

understanding cancer when you are 5

I spoke to my daughter two weeks after my diagnosis.  I guess she knew something was amiss.  I was quieter than usual, crying erratically, and going to the doctor every other day.  She yelled and cried and told me in no uncertain terms that she needed to know what was happening.

My daughter is a super insightful, creative, emotional, and smart little being.  I had already been thinking about what I would say.  I had bought a bunch of "mommy has cancer" books a week after being diagnosed.   All of the books I purchased were wonderful- but I thought I would share two of my favorites.

The images in this book are beautiful and it gave just the right amount of details for my daughter.  This book explains what cancer is and helps give hope.   The book is also translated in Spanish.  This was my daughter's favorite as well.


If you have ever had cancer, you know that you can get pretty aggravated.  Stress is high and all of the things that go wrong get magnified.  Plus you are on a crazy chemotherapy cocktail that does a number on your moods.  Although I try my best, sometimes cancer stands in the way of my being the mommy I want to be.  This book does a nice job of explaining it to my daughter.

I also talked to Caya's new first grade teacher.  Not an easy conversation, "Hi, I am Caya's mom.  I thought you should know that I have just been diagnosed with Cancer.   Caya is extremely sensitive, and I am worried about how this will impact her here at school."  So far, I have been right.  Caya cries and talks about how she is worried about me.  She has also had a hard time focusing

So I bought these as a way of hopefully connecting us when I am in the hospital and she is at school.  I can wear one, she will wear the other.  When we are thinking about each other, we can touch our bracelets and know that everything is okay.

So, I also thought I would share some of the art work that she has been doing to help herself make sense of what has been happening.  I didn't make up any of these directives, they all come from her own little being.   Caya is a born art therapist.

This is the first piece she made for me.  It is a group of happy owls that are setting out to make me happy.  It was folded in half.  Inside the owls have lessons for me.


Inside was four little paper doll owls.  Each one wanted to remind me to do something so I would feel better and be happy.  One reminded me to rest, another reminded me to be patient, a third reminded me to sing and the fourth reminded me to make art.

Caya is most distressed with the fact that I will lose my hair.  She has begun drawing me without hair, I think as a way of trying to accept it and make peace with it.

I have some ideas of things we can do together.  Since Halloween is coming up, I thought it would be fun for her to buy some of her own wigs.  Although our hair is very similar- long and very curly- my hair is brown and red, hers is a very light brown/red with beautiful golden strands through out it.  She was very excited the other day and asked me if maybe I could get a wig that looked like her hair.  Then we could be twins.  Have to say that I love the idea.

And of course, I also find these little love notes for me everywhere.

She is such an amazing little soul.  I will keep checking in with her and make sure that she is okay during this time.  I realize that I am not the only one carrying this diagnosis.  My whole family is.  But together we are strong- and we will survive.

My two year old just gives me lots of hugs and tells me I am his huggy wuggy... which is about one of the most healing things you can get!  He understands that mommy is sick- and I have read him some of the books as well- but I try not to overload him with details.

Both of my children will have birthdays in the next week- and I will not be able to throw the kind of creative birthday party that they have become accustomed to.  But hopefully, we can still have fun and they will know that they are loved.  Another upside to this whole cancer business, is the amount of time I have been able to spend with them lately.  Without worrying about work or teaching, I can just be present with them.  Play.  Teach.  Love.  It has been wonderful.

If you have any other ideas about fun things to do with kids during this time- let me know!  

Wednesday, September 12, 2012

Know your enemy

So, a lot of people tell you not to spend too much time looking at horror stories on the internet when you have been diagnosed with a life threatening illness.  I would agree that there are probably lots of websites to steer clear of- but there is also a ton of useful information out there.

Prior to having cancer, all I really knew about it was that people die from it.  All I really knew about chemotherapy was that it killed cancer but also killed lots of good cells.  I knew that you might become bald and you would get really sick.  But now I know so much more- okay maybe too much more.  But I thought I would share some interesting other possible Side Effects (What we in cancer support-group land call SEs) that people don't often know about chemotherapy.

  1. You will quite possibly lose your hair- but the worst thing many people say is losing your eyebrows, eyelashes, and nose hairs.  You really do need nose hairs.  It is quite inconvenient not to have any.
  2. Many people will have a port put in for the chemotherapy to be administered through.  Chemotherapy medications are pretty toxic and you can quite easily "blow a vein" if you just do it intravenously.  (I am having my port put in tomorrow... I am sure I will have more to say about this later)
  3. You can get extremely uncomfortable mouth problems.  Your mouth can become desert dry and you might develop horrendous mouth sores.  
  4. Your sense of smell becomes acute and people often claim that they can smell the chemotherapy drugs in their body.  It supposedly doesn't smell very good.
  5. Chemo patients might prefer a plastic fork over a metal fork because the metallic taste becomes overbearing.
  6. Your skin gets super dry and feels like rubber.
  7. Because chemotherapy drugs attack fast growing cells in the body, not only your hair is affected.  Your nails are too.  You might get ugly brown lines on your nails or other discoloration or ridges.  Some people's nails simply fall off.
  8. Contrary to popular opinion, people often do not lose weight during chemotherapy.  The drugs are many times given with a large amount of steroids which create ravenous appetites.  Chemotherapy also tends to slow down your metabolism.  Nausea is a problem, but today there are many effective anti-nausea medications that really have made a difference.
  9. Chemotherapy leaving your body can feel like a bad bladder infection.
  10. Many people are now given drugs to help with the low white blood count that is often an unwanted side effect of Chemotherapy (Neulasta is what I will be given).  Unfortunately, these drugs can cause excruciating bone pain.
  11. Many of the chemotherapy drugs given to women can cause them to go into menopause- especially the older you are.
  12. Chemotherapy medications can cause diarrhea and from what I have heard, some of the worst constipation you have ever had.
  13. You might swell up- especially in the face. As if being bald isn't enough.
  14. You are incredibly tired, but also can struggle with extreme bouts of insomnia. 
  15. Chemo brain! - more about this later.
  16. And lastly, you can end up with nerve pain and numbness.  I have heard people talk about this in their hands and feet.
There are other side effects too, but these seem to be the most common.  It is important to note that Chemotherapy is not my enemy.  I think of it more like some rogue soldier I have in my corner.  A little unpredictable, but I have faith it will get the necessary job done.  Kind of like how Dirty Harry always got the bad guy, but there were lots of upside down burning cars all along the freeway where he chased him down.

 It is part of this journey.  And I am lucky that because of all of my research,  I have put together a nice chemotherapy care package with lots of remedies for the above ailments.  I will persevere.  And who knows, perhaps I will be one of the lucky ones who has only mild discomfort.  Some people work through out chemotherapy treatment.  I heard of someone who traveled out of the country in between infusions.

So the title of this post is more about my latest piece of art.  I needed to have a visual for cancer.  That way, when I am doing visualizations about destroying it- I know what I am visualizing.  I made this watercolor tonight.  I was going to do a nice watercolor of a port, but they really aren't very interesting - and plus I might throw up if I think too much about it.

Wish me luck tomorrow.

Sunday, September 9, 2012

Visualizing my future

Friday was my last day of work before I begin disability.  This is super hard for me because I come from a long line of hard workers.  My work as a therapist is connected to my worth.  So to be home will be a challenge.  But I am also looking forward to taking on more at home.  Being with my son during the day feels like a gift that cancer has given me.  I am also worried about the financial impact of not working- but trying to trust that everything will be okay.

I have lots of ideas for art that I will begin on Monday and can't wait to share.  My chemotherapy was supposed to begin on Tuesday, but now we are scheduled for September 18th.  The waiting feels like it is literally killing me.  I want to get started.  I am tired of anticipating this horrible thing.  Perhaps it won't be as bad as I imagine.

Today I thought I would share a piece of artwork that I made a couple of weeks after my diagnosis.  I watched a Ted Talk with Patti Dobrowlski which I have linked to below.  She is a wonderful speaker who talks about using your imagination and visual imagery to help you recognize what you want in your life and to motivate you to obtain it.

She is also kind enough to include a link so that you can print up your own "Draw your Future" template.  You just need to give her your e-mail address.  I gave her my address and haven't been inundated with junk mail so I am pretty sure you are safe.  I thought I would share my finished piece with you.   I see a life free of cancer- where my children, husband, and I are happy and healthy.  Where money is plenty.  And I have cute new short sassy hair cut.  I believe it is going to happen.  And I will do everything in my power to take care of myself and work with my doctors so that it does happen.