Cancer Sucks- Part three- Treatment

This is the part in which I write about what it was like to watch an orange Koolaid-looking poison slowly drip into my arm, knowing that it was going to make me sick and hairless, and wonder if I even needed it.  The part where a little bundle fell from the sky into my arms.  The part where people were there for me. 


My oncologist, Dr. Patricia Legant,  came highly recommended.  She is a no-nonsense, no sugar-coating kind of doctor, but one with a heart who really knows her stuff.  She also knows how to write upside down on the paper that covers the exam tables in her office, so that she can, once again, go over those statistics with her patients, the ones I was too bleary eyed and hysterical to take in on that dreaded day at Huntsman.  Its an impressive skill.  I trust her.  I asked her once "Doesn't it get depressing to work with cancer patients all of the time?"  She said No, that she loves her patients and her job, that she is lucky because all of her patients desperately WANT to be better, I suppose as opposed to some patients in a more general practice setting, who (dare I say it?) sometimes are a bit hypochondria-prone.  

 I cried the first day I got my chemotherapy.  Somehow it made everything so much more "real".  Getting treated for breast cancer (and many cancers, I think) is so strange because YOU FEEL COMPLETELY FINE, and then you go to the doctor to do something that will make you feel sick. Something that you don't even know if you need to do.  Maybe they got all of the cancer in the surgery, and all of this is for nothing.  Taking "medicine" to make you feel sick? Its counter-intuitive.  


My doctor's office was in a dumpy strip mall near Cottonwood Hospital (she's since moved to the Huntsman clinic near my home).  Think pink and turquoise and southwestern paintings on the wall.   I had my chemotherapy treatments in a tiny little file room in the back of her offices.  I sat in a recliner while Sharon, Dr. Legant's nurse, made small talk and put the IV in my hand.  Spence sat by my side, always there, feeling helpless, I'm sure, as spouses of cancer patients usually do. I watched the orange-syrupy looking liquid slowly make its way down the plastic tube into my vein.  Poison, I kept thinking, this is poison going into my body.

We went to Costco right after the treatment and got a few things.  I didn't know what to expect.  I remembered my sister Lyn, and how sick she was with her chemo.  I remembered her throwing up, and the horrible open sores that completely covered the inside of her mouth, making it basically impossible for her to eat.  Maybe having chemo would make me lose weight.  That, at least, would be a good side effect.


The whole family was home when we got back, trying to pretend that life would go on as usual.  About 7:00pm it hit me- horrible nausea.  Now, you need to understand that I am a person who VERY rarely throws up.  Maybe once every five to ten years.  I think its a legacy of the night I spent at a sleepover when I was 12 dry heaving all alone in my friend's basement, but that's another story.


My sweet daughter Mikell heard me throwing up in the bathroom.  She came in and held my hair, rubbed my back, and told me it was going to be okay.  So sweet.  I'll never forget it.


I had treatments about every two weeks. I felt horribly nauseous but never threw up again.  I took every nausea medication on the market and they made things better, but far from perfect.  I was tired.  So tired.  I had gotten acrylic nails for the first time in my life just before my chemo in an effort to make me feel pretty.  My real nails started to turn black from the chemo  under the fake ones, so I had to take them off.  Things that I used to love tasted gross to me.  Diet Coke, that I had been addicted to, tasted like kerosene.  The only things I wanted to eat, most of the time, were eggs and toast (I couldn't eat soft eggs for a couple of years afterwards, because they reminded me of chemo).  I felt sicker with every treatment, until I basically felt no drop in nausea between my third and fourth treatments. It was hard, but not as bad as it is for some people.  I was blessed.  I had four treatments, each two weeks apart, of Adriamycin and Cytoxin.  I was supposed to have four more treatments of Taxol after that, but I didn't.


I had been feeling unsure about having the Taxol ever since I started chemo.  I had heard about its side effects, and how they can be long lasting.  I was especially concerned about the potential for permanent nerve damage and chronic pain.  I prayed and prayed about what I should do.  Finally I decided to ask for a priesthood blessing.  I wanted the blessing to tell me whether I should take the Taxol or not, but it didn't.  It basically said that I would be okay either way. 


I told my doctor that I didn't want to take the Taxol.  I thought that she would be like the guys at Huntsman, telling me that if I didn't do it I "would die", but she wasn't.  She understood, and said that even if, heaven forbid, my cancer did come back some day it wouldn't be because I didn't take the Taxol.  I was thankful for that. 


This turned out to be one, of many, faith promoting parts of my cancer journey.  One day, several months after I finished my radiation treatments, my oncologist told me at a follow-up visit about a new study. Researchers had just recently found that Taxol was ineffective in treating patients with my type/size etc. of cancer.  If I HAD taken the Taxol, it would have been for nothing, and who knows what side effects I might still have today.  I feel that I was prompted not to take it, and I'm glad that I didn't.


An amazing thing happened one day about a week and a half after my first chemo treatment.  The phone rang, and it was the Division of Child and Family Services.  I was surprised, because we had told our social worker that, although we had said the summer before that we were interested in another child (probably a girl- we had Lucas and Max at the time) we couldn't consider a child now because of my health.  Why were they calling us?  Didn't they know I had cancer?


DCFS said that "a sibling of my boys had come into care", but that was all that they knew.  A sibling?  My boys have two older sisters that are with relatives of their birth mom, was it one of them?  I had no idea.  They asked me if we would be interested.  I couldn't believe it. I had just started chemotherapy! I told them to give us a call back after they had more information.  

It turned out that the "sibling" in question was a sweet little baby boy, who we now call Jacob.  We told them that, of course, we wanted him, that the brothers needed to stay together.  That this cancer was a temporary thing, that we had a good support system, that I was going to be okay.  I put on my bravest face as they interviewed us, and it worked.  


Some people have thought that we were absolutely crazy for taking in a newborn at the same time as undergoing chemotherapy, but honestly, it was a blessing.  Sitting on the couch snuggling a sweet newborn is a wonderful thing to do when you don't feel good.  Reminds you of the goodness in the world.  Sometime I'll write more about Jacob's story, another faith promoting experience.

Radiation was like this.  Mostly I napped :)

After the chemo, and a few weeks of recovery time, I started my radiation treatments.  Compared to the chemotherapy, radiation was easy for me.  I was tired, and a little "sunburned", but it was nothing compared to the killer nausea.  I got up early every morning and drove to the new IMC in Murray for a seven AM treatment, five days a week for six weeks.  It was a hassle, but really not much more than that.  I was tired, but I had been tired for so long that I hardly noticed it.

So many people were so wonderful to my family during all of this.  People who asked me how I was feeling, and really listened.  People who asked Spence and my kids how they were doing with everything, and really listened.  People who brought meals.  People who came over and took Luke and Max for a while so I could have a break.  Angels.

Race for the Cure- I'm in pink on the steps

Right after I finished my radiation treatments I participated in my first Susan G. Komen Race for the Cure.  Our whole family walked together, pushing the boys in strollers.  It felt awesome, and humbling, to be among so many others who had gone, and were going, through the same things as I was.  I think it was good for the family, too.  Made us all feel a little less alone.   I made a little banner at the survivor's breakfast that I still have hanging in my closet- my prayers and wishes for myself at that time. Its at the top of this post.

Not bad, I think.  Five years later, I think yep, these are them.  Still my prayers and wishes.


Next time:  I finally get to my Lessons Learned.

Cancer Sucks- Part Two- Diagnosis

In my front yard right now.

This is the part of this story in which I tell about what it was like to have the bee-jeebies scared out of me when I was diagnosed, for the second time, with Cancer.  The part where I tell about what its like to have your world thrown off its axis.  The part where you lose your hair, but get through it.  The part where the love and support of others makes all the difference.  


This post may be very long.  Or it may turn in to two posts.  I am writing for myself, so that I don't forget what happened, ever, even when I am really really old and my memory is (like my 96 year old dad used to say) "like a steel trap" (not).  I am writing for my family and friends, who loved and supported me through it all.  I am writing for those who are clawing their way through Cancer right now, and need to see that light at the end of the tunnel.  


I hope that what I write is helpful.


In my post Cancer Sucks- part one I wrote about my experiences with thyroid Cancer. Definitely scary, but almost more of an inconvenience.  After my treatments for that were over, my life returned to more-or-less normal. I was a good girl and got my screenings.  I wanted to do all I could to NEVER walk down Cancer Street again.  Once I turned 40 I had regular mammograms and colonoscopies.  I started having colonoscopies young, because, as you may remember, my mother died of Colon Cancer when I was five (read about it here).  I've had several, and had pre-cancerous polyps that could have turned into full-scale colon cancer painlessly removed twice.  I am a big cheerleader for colonoscopies --go Colonscopies, go!!!-- because they've saved my life.  If you have a family history of colon cancer get your hiney (literally) in and have one.  If you are over 50, have one.  If your parents are over 50, march them in and MAKE (if you have to) them have one.  You can read about what my last one was like here. 


Anyway, I was due for a mammogram in August of 2005 but missed it for a reason that I'm sure I thought was valid at the time but can't remember.  October is breast cancer awareness month, so one October day my husband Spence came home with this little pink ribbon thingy that he got at work and stuck it on one of the shelves in our closet.  I saw it every day, and eventually the guilt got to me, and I re-scheduled my mammogram.  It was in November.  I went in, put on the lovely gown, sat down in the inside waiting room and smiled shyly at the other women who were there for the same thing.  They smiled awkwardly back, while we all pretended to watch something inane like Jerry Springer or Montel Williams (some kind of "high quality" television programming) on the little TV.  I remember feeling younger than the other people there.  


The appointment itself was uneventful.  The boobs were squeezed, the small talk made with the technician, the clothes put on, and I was home.  I thought nothing of it.  


I noticed that I had missed a few calls from Intermountain Healthcare on the caller ID, but again, thought nothing of it.  They were probably taking a survey.  Seriously, it didn't even cross my mind that the calls might have to do with my mammogram.  Then one day I got something in the mail from the Breast Care Center that said "We've been trying to reach you about the results of your recent test, please call..."  That got my attention.


I called, and scheduled a follow-up mammogram.  I was worried, but not too much at this point, because I had been reading on the internet (wonderful and dangerous place when it comes to medical information) that most of these things were false alarms (most are).  I had never felt a lump, still couldn't. It was probably just a shadow on the film, or some kind of cyst, right?


Spence and my brother Dan came over to give me a priesthood blessing.  I wanted them to tell me that this whole thing was going to turn out to be nothing.  They wanted to tell me that, too. They really wanted to, but they couldn't.  Instead they said, and felt, that this whole thing wasn't going to turn out to be "nothing", but that it wasn't going to be the end, either. 


They were right.  I remember the radiologist matter-of-factly showing me the lump on the ultrasound. Putting my fingers on my left breast and saying, "Can't you feel that?"  I honestly couldn't.  Or maybe I barely could, but it just felt like a lumpy breast.  Like my breasts always felt. Like normal.  


I was more or less in shock, numb.  They kept telling me that most of the time when you get something this early it isn't much of anything.  Maybe I would have to have surgery and then radiation, but the surgery is easy to recover from, and the radiation not that bad.  I would be like Cheryl Crow.  She never had chemo, never lost her hair, was right back there singing on stage.  Yeah.  That's how it was going to be.


My surgery was scheduled remarkably quickly.  My surgeon was awesome, and very re-assuring.  He, too, seemed to believe that this would turn out to be only a minor thing. It was right before Christmas, and my family babied me and was oh-so loving.  I actually remember that Christmas as being an especially sweet one.  After the New Year someone from IHC Breast Care called and asked if I would like to see a panel of doctors at the Huntsman Cancer Institute about what was coming up next.  It was a new thing, and they said it would be great, that I would be able to get all of my questions answered.


That appointment turned into seriously one of the worst mornings of my life.  They took Spence and I into a little room with a couch where one specialist after another came in to talk with us, loaded with an armful of fun that included new information on the size and spread of my tumor, conflicting statistics, scary ultimatums, survival rates with various procedures, and lists of horrible side-effects and long term possibilities that I had never even considered.  I started bawling, and couldn't stop.  We felt trapped.  Still they came in.  "If you have this treatment, your hair will of course fall out, you may get mouth sores, your nails may fall off and never grow back, you may have bone aches and possibly permanent numbness and neurological changes.  If you don't do the treatment, your cancer will come back, and when it does, you WILL die.  You may get lymphedema, and have to wear support-hose on your arms for the rest of your life.  Do this exercise every day to help that not happen.  And oh, by the way, if you have the breast cancer gene, your children will be at risk.  They may not want to take the risk of having children, and may want to have  mastectomies as a preventative measure."  Really. All said in a matter of fact way as if I were not a mess, sitting in front of them, crying my head off.  Said in a way that said "We do this all the time". Sadly, they DO do this all the time.  Hopefully they are better at it now than they were then.


I left feeling scared and confused.  I went home and cried.  A lot.  Cried until no more tears could come.  Cried more than I ever had before or ever have since.  


Life went on.  I went to work, got the kids dressed and fed.  Went through the motions. I was teaching high school, and told my students what was going on.  I think its good not to pretend like nothing ever goes wrong in this life.   They were great.  So supportive.  Lots of people were.


My ward (congregation) had a fast for me.  We had only been in our neighborhood for a year or so, and it was so touching to me how many people went without food and sent prayers my way.  So sweet.  I know it helped.  I remember feeling so loved and supported, and even feeling a physical burning in my chest on the affected side the whole day of the fast.  Almost like a cleansing burn. It was amazing and the support and prayers so appreciated.


My sweet neighbor and soon-to-be good friend who did hair took me wig shopping.  She had this great attitude like this was all a party.  We went to every wig store in the Salt Lake Valley, trying things on, laughing, making it fun as best as we could.  If you ever need a wig, drop me a line and I can point you towards the best places and give you some good info.


About two weeks after my first treatment, just as they said it would,  my hair started falling out by the handful.  It was crazy.  I'd just run my fingers through my hair and have maybe 100 hairs in my hand.  Then more than 100.  I put a pony tail in my hair and a baseball hat on my head and didn't touch it for a week, trying to make it last as long as I could.  Finally it was time to cut it off.  My sweet friend washed it in our kitchen first.  It looked like a dead cat was in the sink.  So much dark curly hair.  Then she cut it in a bob (I was used to long hair).  She said things like -  "Look how cute this is!  Lets try it even shorter, though- I want to see how you look in a pixie.   Oh my gosh, you look great!  You are totally going to rock the short hair when your hair comes back.  You totally have the eyes for it."  Even though my hair was much too thin to wear out the way it was, I felt pretty, and for that I was so grateful.  The next morning, when I took my shower, all the rest of my hair fell out.  All of it.  I was bald.  Me, the girl who had always complained about having too much bushy hair.  Once that part was done, though, it was done.  I honestly grew to think that hair is overrated.  It gets in drains, on floors.  Its just dead cells, after all, right? Kind of gross, if you think about it.


Much more to say, but I think I'll stop here for now.  I need to get back to (thankfully) normal life.  

Things to say about what its like to see poison dripping in to your veins.  About side effects.  About a surprise bundle of joy that fell into our home from above right after I started chemo. About wonderful people who were, and are, there for me, and for my family.  About what it means to be a survivor.  


About my lessons learned.

Cancer Sucks- Part One-Round One

NOTE:  When I say that Cancer "sucks", its not that I am saying that other things don't "suck" just as badly, or even much worse.  We all get our bag of troubles in our lives, and yours could very well be MUCH harder to deal with than mine.  This is just an anniversary for me, and a time to reflect.

When I was a kid, you didn't say the word "Suck" in my family.  It was a BAD WORD.  I still don't really like the word much, although (sorry Lyn) I do say it on occasion. 

Cancer sucks.  It really does.  I sometimes (shockingly) even call it- ready for this?- "Damn Cancer".   I know, you can't believe I said that.  You'll never look at my blog again. Get over it.


I watched my mother died of Cancer (colon), when I was five (see my post That First Pivotal Event).  I watched my sister almost die from it twice.  I grew up hating Cancer, but always thinking that it wasn't "my thing".  I had other trials.  Cancer wasn't going to be my problem.


But alas, I was wrong.  

Jacob at preschool graduation. 

The good news, HOORAY!!!!!!!!,  is that as of right about now I am a FIVE YEAR SURVIVOR of the dreaded stuff.  Go me.  I remember that I set off, with hair barely there, on a celebratory trip to Disney World with Spencer, my older kids and then-infant son Jacob five years ago today.  The same Jacob who graduated from preschool this week. Wow.  It seems like a long time ago.  So much has happened since.  


Cancer, real or imagined, is still a part of my life.  It seems like about every six months or so I have some kind of "scare" requiring testing and agonized waiting.  Thankfully, to this point, all of these scares have turned out to be just minor problems, or nothing at all.  


That wasn't the case five-and-a-half years ago, or fourteen years ago.  Those times, the scares weren't just scares. They were "IT".  The big "C".  The one that sucks.


ROUND ONE:  Fourteen years ago (wow).

Fourteen years ago I was a 30-something mom of young children. It was December, and I had a sore throat that wouldn't go away.  At the time, Spencer, Erin, Mikell and I were all performing in the Mountain West Ballet production of The Nutcracker. We did it for three years- one of those years we made Garrett be in it, too, as a party boy. 


I decided to go to the doctor for the sore throat.  He told me that it was just a virus and nothing to worry about, but while I was there he felt a lump in my neck that he thought I should get checked out.  It turned out that I had a walnut sized benign lump on my thyroid, but that within that walnut there was a pea-sized malignant growth.  


I remember standing in my laundry room with the door closed so no one could hear or see me, crying.  Thinking that this couldn't possibly be happening to me, that Cancer wasn't my "thing".  


During this round, though, I never thought that I might die.  My doctor told me "If you're going to get Cancer, this is the kind you want".  The survival rate for Thyroid Cancer is very high.


I had my thyroid out just before Christmas.  Everyone was very sweet and supportive. They babied me and brought meals.   I had to go for six weeks without any replacement hormone after the surgery, which was hard.  I was teaching at the time, and told my students what was going on.  I think that its good for people to know that other people are going through "stuff".  They were great.  I taught mostly from my desk because I grew increasingly tired.   I have a chair that we got secondhand that I painted, Mary Engelbreit style, during the last week when I was so tired that it was all I could do to sit up and paint for a while, then lean back on our couch and rest.  The chair still sits in my living room, I just can't seem to get rid of it.

My Cancer chair

After the six weeks, I went in to the hospital for a few days and got big-time radioactive. I was given radioactive iodine treatment by nurses who wore haz-mat-style suits.  Seriously.  It was like something from a science fiction movie.  When I went to the bathroom I was told to flush it six times, to get all of the radioactivity out of the bowl.  Being in the hospital was kind of a nice break.  I read and watched lots of DVDs that I wanted to watch.  After my hospital stay I went home, where for several days I was told not to come within ten feet of anyone else.  Try that one with young kids and a dog.   I remember waving goodnight from across the room.  Bittersweet memory. 


I was put on replacement hormone after that, and life quickly returned to normal.  I had follow-up testing, and my thyroid dose has been monitored and tweaked, but basically it hasn't been that big of a deal.  I had a great surgeon, I don't think that anyone even notices my scar.  


Generally, it was about as easy as Cancer could be.  Not fun, but not that scary, and not the end of the world.


Round two was tougher.  


I've already broken the cardinal rule of blogging, though, ("Don't make it too long") so round two can wait 'til next time.   

The Absolutely Necessary Rule

I once got some good parenting advice from a woman with eight children. They ranged in age from about 14 to 28 and all seemed to be intelligent, confident, NICE people. I asked her how she and her husband had managed to raise such great kids, and this is what she told me: "I only say "No" when it is Absolutely Necessary." I asked her what she meant by that. She said, "When my kids ask if they can do something, I ask myself: Is what they want to do morally or physically dangerous? If the answer is no, I say yes."

I've given this advice a lot of thought over the years, and tried to put it into practice whenever I can. Saying "Yes" isn't always convenient, and sometimes it makes me worry.  "Mom, can we build a fort in the living room?" That one's not too hard.  Re-folding ten-plus blankets isn't my idea of fun, but its survivable.   How about when your seventeen year old son wants to go out of town with his girlfriend and her family for a couple of days?   Much harder.  When I was in this situation I told myself the following:  "He is a great kid. He will be well-supervised.  It will be okay.  It is not morally or physically dangerous.  I have no real reason, except fear, for saying 'No'."  We said yes, and he was fine.  The fact that we said "yes" showed him that we trusted him.  And, from my experience, built our relationship more than two days of him moping around the house while his girlfriend's family was gone would have.

Had the circumstances been different, or with a different kid, my answer might have been different. With my three now-young-adult-aged kids, the "Absolutely Necessary Rule" worked wonders. They are great people and some of my very best friends in the world.  My role with them now is more to give advice than permission.  Its been an interesting transition, and giving up control of what they can and can't do is sometimes hard.  The answers that seem clear to me don't always seem that way to them.  I'm still learning  how to do this parenting-adult-children thing.

Maybe its a good thing that I'm getting a second chance at parenting with my young kids.  Maybe with them the Absolutely Necessary rule won't work as well, because of their special needs.  I think, though,  that mostly it will.  I guess time will tell.