Monday, April 30, 2012

Part 4: The Aftermath

I did go in for one final surgery and I now have a 2-inch scar on my arm.  Fortunately, no cancer cells were found in any of that tissue.  I see the scar every day (it is on my left forearm) and it is a reminder to me about how lucky I am to be alive.  After seeing my oncologist for a few follow-up visits, I started going to a regular dermatologist again.  I see him every six months without fail.  He checks everywhere I have skin because melanoma can be found anywhere, even those places that don't see the sun.  The peace of mind I get from those visits is always wonderful.

When I was eight months pregnant with my fourth (and last) child, he found a mole that concerned him and it was removed.  That was a miserable week for me as we waited for the pathology report.    I thought, "What have I done?  I've had cancer.  Why am I having another child?  What if this is melanoma?"  It came back "abnormal" but not cancerous.  I think for me, it was a major factor in deciding to be done having kids.  (My husband always wanted four, so we were likely going to be done anyway but for me, it made the decision easier.)  I LOVE being a mother and there are times I am sad I didn't have anymore kids but I look at the scar on my arm and am grateful for each day I have with my four kids.

In the year after my diagnosis, all of my siblings and my parents went in for dermatologist appointments.  Sadly, one sister did have a melanoma removed.  Her cancer was much more advanced and she went through a very hard year of radiation and chemotherapy treatments.  Gratefully, all is going well for her, but it was very emotional to watch what she went through and what easily could have been me.

Since my diagnosis, I have been part of a melanoma research study, where I was examined and prodded by various nurses and doctors.  I joke about it now but being on an exam table with nurses and doctors looking at my skin and saying things like, "Oh fascinating!"  "Have you seen this mole?  Her sun damage is nothing but her moles are impressive" was somewhat unnerving.  At one point I said, "You know I can hear you right?  I'm laying right here about two inches away from your magnifying glass."

And, to answer a few questions I get from people when they find out I had melanoma:   No, I have never been to a tanning bed--thankfully.  Statistically, chances of skin cancer but especially melanoma go way up if you have used one, even one time.  No, I didn't have a lot of sunburns growing up.  My mom always applied sunscreen and I often wore long-sleeved shirts in the summer.  No, I didn't have a summer job as a life guard or spent hours laying out in the sun.   I was told my skin has the sun damage of zero, meaning, they couldn't see any significant sun damage on me which is almost unheard of in a person over the age of 30. So, statistically, I was not supposed to have melanoma.

But, because my children have a mom who has had a melanoma, their chances of having it, have gone up.  So yes, I am religious about them wearing sunscreen but more importantly, covering up.  They all wear rash guards in the pool, we all have our hats that we wear when we are outside, and I rarely am outside with a short-sleeve shirt on.  We spend a ton of money on sunscreen year round.  I put it on my face and arms daily and my kids regularly, even in the winter.

I try to not to take it personally but do find it hard to hear friends say, "Oh, I just hate my pale skin.  I have to go spend some time laying out."  I recently learned of a friend who went to a tanning bed in preparation for a trip she was going on.  This person sat next to me at the pool one summer (with me in my 3 inch-brimmed hat, rash guard, and towel across my legs) while I told her of my worry about my last mole removal, hoping the pathology came back normal.  I thought she "got it" but obviously, she didn't.  I do think I make people uncomfortable at our local pool.  We do go almost daily but my kids and I are in our hats, long-sleeved rash guards and always sit under a sun tent.  If I do make people uncomfortable, I am sorry.   I will not be "afraid" of the sun or prevent my family from enjoying the pool, the beach or playing sports outside but I will exercise caution when I am in it.

I am a huge believer in personal freedom and I don't want to ban tanning beds, or force people to do things like pass laws about requiring hats on kids, etc.  I do hope my experience has made people more aware.  It certainly has made me more aware and for that I am grateful.

I am now more aware and sensitive to people who are afraid when they get "that" phone call.  I am more aware of the kindness of others--family, neighbors, friends, doctors, front desk staff at medical offices,  and strangers who open doors, etc.  I am more aware of my Heavenly Father and his love for me and all of His children.  I can't look back on this experience without seeing His hand throughout it.  I am more aware of what a solid rock my husband is during stressful times and what a wonderful man he is daily.  I am more aware of my children and what a blessing they are in my life.  I am more aware of how I spend my time and try to use it well.   I am more aware of the need to take better care of myself and my family.  I am more aware of the sun and ways to get vitamin D without sun exposure.  The aftermath of this experience has been good to me, very good. One phone call did change everything but fortunately, the changes have been good.

Oncology Part 2

Let me take a brief moment to say, throughout this whole experience, I was very aware of divine intervention and blessings given to me and my family during this time.  My relationship with my Heavenly Father changed during this and for that, I am eternally grateful.  I saw little "tender mercies" throughout the whole process as anyone who has had trials in their life can attest.  That said, I am fully aware of many good people, hard-working, devoted mothers and fathers and children who have lost their battles to cancers.  I had a very scary type of cancer that was caught early and made my treatment easy and my life expectancy much higher.  I recognize it as a huge blessing and something I try to take seriously every day.  I interact with my family and others differently because of it.  I was given the gift of a longer life and I try to honor that daily.

After the wonderful news that it appeared my cancer was caught at one its earliest stages, she made an appointment for me.  She explained that I needed to bring a family member with me because I was going to be given a lot of information and I needed the support of the second family member to help me remember and absorb it all.

On the appointed day, my father-in-law went with me to the appointment.  We got the first appointment we could and my husband had a full (financially productive) day of dental appointments and we both decided it was best for him to work and me to go with my father-in-law.  (My parents live in Colorado.)  We arrived at the building and outside of this doctor's office, we saw the Huntsman Cancer Institute label.  My father-in-law had lost his wife (my husband's mother) to breast cancer less than a year before and we both gave each other very sober looks when we saw that sign.

We opened the door and walked into the waiting room.  I had never experienced anything like it.  There were very sick people in that waiting room.  Besides the typical magazines, there were wig catalogues, and very sobering pamphlets dealing with melanoma information and treatments.  Fortunately, I was brought back quickly because I started to feel the panic rise in me.  I was given a gown to put on and some paperwork to fill out.  The room was very sterile and on the wall, there was a picture of the various layers of our skin, showing how melanoma penetrates into the various layers.  I remember leaning over and putting my head between my knees because I thought I was going to pass out.  I wondered, "How did I get here?"

A very cute and bubbly nurse came in and said, "The doctor will be in soon.  He will do a complete mole exam and remove anything he is worried about.  Don't worry about the mole removal.  He is excellent at doing it."  I don't know why it hadn't occurred to me until that moment but I realized, I could have another melanoma on me.  I am covered in moles.  Something much worse to could be waiting for me.  Was I a melanoma time bomb waiting to go off?

She left and again I put my head between my knees.  I've never passed out in my life but I had seen people do that on TV and it seemed like the right thing to do.  And, at least, it gave me something to do while I waited feeling very vulnerable and alone.

Then, in a very loud entrance, the doctor walked into the room and said, "First of all, you are going to be fine.  I don't know how you got sent to me because the cancer is already gone.  Most people I see have advanced cases of melanoma.  The man who did your excision really knew what he was doing because he got it all.  Thankfully, he didn't just do a shave biopsy."  

I sat there stunned.  There was no introduction.  No,  "Hi, I am your oncologist.  What is your name?"  I'm not complaining because every word he said was a drop of sunshine to me but I wasn't expecting it.  He then went out and invited my father-in-law back in the room.  We talked about my experience with the first dermatologist.  (He said, "Don't worry, he will be getting a letter from me.)  He talked about that most people he sees are very sick and how lucky I was to have caught it early.  He explained just as a precaution, they were going to go back in and do another surgery, deeper and wider to ensure the cancer was all gone.  When I asked about what "stage" I was,  he said, "I think in-situ but the pathology makes it look like 1A but it is close.  Either way, you are going to be fine."  He then said, "For the rest of your life, you must see a dermatologist every six months."  I then said, "I am guessing I should not have any more children."  He said, "Why not?  Some people get melanomas.  Yours was caught early.  It is not coming back.  Go have 10 more children." Also, after I explained my frustration with dermatologists 1, 2 and 3, he gave me a recommendation for one.

I later learned I was meeting with a man who many consider the melanoma specialist in the whole western United States.  He was personable, thoughtful, very patient with me and my questions and exuded confidence.  I never felt "rushed" during the appointment.  He was just absolutely fantastic.  From the moment he walked in the room, I knew I was in good hands.  To this day, I can not forget the rush of happiness that overcame me when he walked in the room and said, "You are going to be fine."

He did do a complete skin exam and removed two moles that he said were nothing I should worry about but would be good to have gone.  (I'll be honest, the relief I felt when I got the call that those were fine was huge.)  I was sent for a chest x-ray and some blood work.  And, he kept on repeating, "You are going to be fine.  Don't worry."

The appointment for my 2nd surgery was made.  We left the office, called my husband and then went out for a celebratory lunch.

Part 4:  The Aftermath

Sunday, April 29, 2012

Oncology Part 1

"You have melanoma."  "Call your dermatologist."  "Excuse me, what exactly is melanoma?"  "Please call your dermatologist."

So, I called one of the dermatologists I had tried to get into earlier in the month.  I said to the lady on the phone, "I was just told I have melanoma.  I am supposed to see a dermatologist for a follow-up visit.  How do I do this?"  She said, "I am so sorry.  Everything is going to OK.  Please call your doctor and have him send the lab results to our office."  So, I did.

10 minutes later, I got another call.  It was the dermatology office.  She said, "After looking at the lab results, our doctor does not deal with melanoma.  He is sending your information to a skin cancer specialist.  Do you have a pen?  I need you to call their office right away.  I need you to call immediately after we get off the phone."

Ok, now I started to sense something bigger was going on than just a follow-up visit.  I tried to look up the name of the doctor the lady told me to call.  I couldn't find him under dermatology.  I couldn't find him under any MD listing.  I went to the white pages and finally, I found his name.  It said he was an oncologist.  The word jumped out at me.

Let me give anyone reading this,  a big piece of unsolicited advice.  Once you have been told you have cancer, stay off the internet.  No matter how "sensible" you think you are being, it is not a good idea.  I typed, "melanoma" into Google and my world turned upside down.  I was reading about survival rates, Breslow's depths, Clark's levels, finding hope in spite of a melanoma diagnosis, living with cancer and I had three little children in my house needing me.  I had cancer and from what I was reading, I had "chemo/radiation low-survival rate cancer" and yet my kids were on the playset demanding me to watch them swing.  They needed to be fed lunch.  I had to read to them.  My baby needed nursing.  How do I have cancer and be a mom?  A wife?  The house needed vacuuming.   How do I tell my husband?  It can't be good for his patients to have a dentist whose wife has cancer.  He needs to focus on their root canals.  He has to be a good dentist to keep his practice going so we can pay the medical bills we were going to have.  I had church service to do.  How does a mole on your arm change everything?

I called the office of the "skin cancer specialist" who really was "an oncologist who specializes in melanoma."  I spoke to the front desk lady.  She said the lab report hadn't arrived at their office yet and I couldn't make an appointment until they had it.  I called my husband.  He said, "We will get through this.  Call and ask them to read the lab results to you.  Write them down.  I'll call you when I am done with work."  Again, people are talking to me like I am sick.  Like I have something to "get through."  I just pulled out a ton of grass to create a flower bed in my front yard.  Sick people can't do that can they?  What is happening?

After about 20 minutes, I called the oncologist's office again. No lab results yet.  I called the OB's office and asked to be read the lab results.  And, could they also send them to the oncologist?  To this day, I have no idea why dermatologist number two never sent the lab results.  But my OB's office did and they read me the lab report word for word.  The numbers meant nothing to me (Clark's level, and Breslow's depth, which would come to be my favorite number in all of this and other things that seemed like a foreign language) but I wrote it all down, word for word.

I called the oncologist office and spoke to the front desk lady.  I said, "I can read to you the lab results."  She said, "I can't make an appointment until we get the fax."  I said, "I am mother of three young kids.  One of them is nursing.  I need an appointment.  I need to know if I will require chemotherapy.  I need to know if I will lose my hair.  I'm a natural blond who has never colored my hair.  Do you know how uncommon that is?  I need to know what "stage" of cancer I have.  Do I have to wean my child?   I love nursing this baby.  What about radiation?  I know this is every day stuff for you but my world has been turned upside down.  Did I tell you I have three young kids, one who is nursing?"  Yes, I was talking a mile a minute but dang it, I was scared and wanted answers.  All I had was a mole that itched and looked "funny" and now I have melanoma which happens to be cancer.  There was a pause.  She said, "You've been on the Internet haven't you?"  I said, "Yes."  She said, "One minute."  I was put on hold.  She got on again many minutes later.   "We just got the pathology report.  This is excellent news. Breslow depth is less than 1mm.  Clarks Level 2 but it appears only part of the lesion is Clarks Level 2.  Margins appear to be clear but we can't be sure until our doctor's preferred pathologist looks at the actual slides.  You are going to be fine."  I said, "But I have melanoma."  She said, "But not all melanoma diagnosis is the same.  You are lucky."

I wasn't lucky.  I was blessed.  I fought to get that mole removed.   I knew something wasn't right and fortunately, I acted on it.  Which, truth be known, was not like me.  Again, I thought, "Divine intervention."

Part 3:  Oncology Part 2

Friday, April 27, 2012

The Phone Call

I recently read a short essay about a woman describing her feelings about being told she had skin cancer.  It wasn't a brilliant piece but it captured some of my similar feelings and it got me thinking about my own experience.  I am coming up on "the date" of being told I had cancer, so I thought now would be as good as anytime to write about my experience.   It might be good for me.  And, it might be good for others.  Because my story is somewhat long, I plan on writing this in three parts.

First, the phone call:

It was approximately seven years ago I got the phone call.  It was my OB's nurse saying, "We got your biopsy results back and you have melanoma.  The doctor says to call your dermatologist and make a follow up appointment."

Being fair skinned and growing up in the high altitude of Colorado, my mom took me regularly to the dermatologist.  It was always a sterile environment with me wearing a hospital gown and a doctor looking at my skin.  I would hear him say things like, "Keep an eye on left shoulder nevus" and "Let's remove that one."  I never thought much about it except when people would occasionally ask about the small round scars that were left behind from the mole removals.

In my adulthood, I went to college, got married, started having kids, moved many times and never thought about my moles or going to a dermatologist.  But, shortly after my third child was born, I started having a nagging feeling.  My memories of going to a dermatologist came back to me.  I realized it had been years since I had seen one and recently, I was concerned about one particular mole on my arm.  Let me clarify the word concern.  It was never, "I might have skin cancer."  It was, "I need to go and just be told this is normal".

I made an appointment with a dermatologist.  I opened the phone book and just picked one.  He was in the same building as my OB.  I knew how to drive there.  It made sense to pick a doctor who was close.

Because I am horrible about getting babysitters, I went with a nursing baby and two toddlers.  Maybe this colored how they treated me but even in the waiting room, I knew something wasn't right.  It was a room full of pictures of woman's faces, ads for botox and laser skin treatments and "How to Look Younger" fliers.  I was taken back into a beautifully decorated room with a water feature.   The nurse asked me why I was there, which seemed very strange since when I made the appointment, I said I wanted to have an all-over mole check, and she left the room.  No gown was given to me to put on.  About 10 minutes later, a heavy-cologned doctor walked into the room and asked me what I wanted.  I said I had some concerns about my moles.  I showed him two on my arm to which he said, "Those look fine."  I said, "Well, I was hoping for a complete skin exam."  He said, "That really is unnecessary."  I said, "But this mole, based on the ABCD chart (the E was added a few years after this) has all of the characteristics of something I should be concerned about.  Shouldn't you remove it?"  He said, "No, that is why you come to a doctor.  I am a specialist.  I know that mole is fine."  I was ushered out of his office.

I'll be honest with you.  I was relieved.  That is why I went to his office.  I was told it was normal.  I walked out and thought, "Good.  I don't have to go back for at least a year."  Except, I still had this nagging feeling that I never got that complete mole check.  And, the mole on my arm itched.  Sometimes I would find myself holding my arm away from my body because that mole felt "off" to me.  So, I asked around and got the name of another dermatologist from a friend of mine.  I called his office and was told they couldn't see me for several months.  I remember repeating, "Really?  There is a mole that I am concerned about.  Can't you see me earlier?" I was told no.  I called another dermatologist from the phone book and was told the same thing--two months until they could see me.

Being Mormon, I was raised with a strong belief in a loving Heavenly Father.  I was taught He loves me and watches out for me and I know it is true because what happened next could only have happened because of divine intervention.  I found myself calling my OB's office.   The words I used didn't feel like my own.  I asked if there was anyway they could refer me to a dermatologist.   I knew dermatologists had long wait times but I needed to get in right away.  Could they please help me?  I explained my concern over this one mole and said I wanted it off, regardless if they thought it looked normal.  I needed it gone.  I can still remember the nurse's words, "Come in this week.  The doctor will remove it and send it to be biopsied.  It will go to the same lab any dermatologist would send it.   Then, you don't have to worry about it."

So with three kids in tow, I went immediately into my OB's office.  I was taken back into one of the exam rooms.  I started nursing my baby son.  The doctor walked in.  I showed him the mole on my arm.  I heard him go out in the hall and tell the nurse he was going to do a bigger mole removal than he initially understood.  He needed the "surgical kit".  His nurse came in with animal crackers for my toddlers.  This was no "shave biopsy" (a term I learned later) but a full excision.  While he cut, we chatted about my kids, my toddlers looked over my shoulder and commented how how much blood was on my arm.  It took about 20 minutes for him to finish it all.  I left his office with a big gauze taped on my arm.  I took my kids to the local mall where we ate at the food court and they rode the carousel as a reward for being so good at the doctor's office.  I was relieved it was finally off.  It was like a huge weight had been taken off my shoulders.  One week later, I got the phone call that changed everything. "You have melanoma."

Next week: Part 2:  Oncology

Monday, April 23, 2012

Spring Break, Locally which actually was several weeks ago

Spring Break happened several weeks ago but today, I decided to post pictures about it.

We stayed locally this year and just did fun stuff around town.  The weather was great, so we played a lot of 2 square on our driveway.

 We went to the park and flew kites
 and slid down the grass.
 We went to Color Me Mine.

 We purchased a basketball hoop and played a lot of basketball.
 Toothsome #3 worked on his United States Quarter collection.

 We went to the new Natural History Museum.  


 We built and shot off rockets

 Toothsome #4, my little hipster.
 We got new Easter dresses.  
(I am not actually wearing mine in this picture.  I found something I wanted from Shappy Apple after Easter.) 
 And, of course, we dyed eggs.

I don't have pictures of the many times we ate out or our attempt to find the best place for hot chicken wings in Utah.  It was a great, low key Spring Break.

Tuesday, April 17, 2012

Big Day

On Saturday, Toothsome #3 was baptized.  In the Mormon church, children are baptized at age eight.  

I have never personally seen a person be more excited to be baptized than Toothsome #3.  He kept saying, "This is the greatest day of my whole life!" 



My parents flew in from out of town and three of my nephews and niece-in-law came up from Provo (even though it was the first day of finals at BYU) to come and be a part of it.  It was a very special, spiritual day for all of us.  

Friday, April 13, 2012

My Time with Dickens

In February, I did this post about my goal to finish reading Charles Dickens in the year 2012.  Since that post, I have read three more of his novels--David Copperfield, The Pickwick Papers and Oliver Twist.

I have discovered that there are times in our lives, when we are better suited for reading certain authors than others.  About 15 years ago, I attempted to read all of Charles Dickens and after reading one, and starting David Copperfield, I couldn't do it.  I would read the first few pages and get "stuck."  I tried multiple times and could never get through it.

Well, this must be my time for Charles Dickens because I have absorbed and loved these three books and look forward to reading the rest of his novels.  Honestly, I have had NO trouble with them and have been very sad when I have completed each story.

Another thing I learned years ago, when I read all of Jane Austen in about a month time period, is that it is necessary to take a break and read other authors in between.  By the end of reading Jane Austen, all of her books seemed to blend together and to this day, I have a hard time remembering where one story ended and another one began (with the exception of Emma because she is such a silly character.)

So, this time around, I read one of Charles Dickens' novels, read a few other books in between and then pick up Dickens again.  The authors I read in-between seem "poor" in comparison to Dickens.  Dickens has such a beautiful way with words and his ability to describe a scene is almost matchless.  I was talking to my mom about this and I said, "It is like drinking a fresh glass of cold, filtered water when I pick up Dickens after reading another author.  I didn't realize I was thirsty or that the other drinks I had been drinking in-between were unsatisfying until I pick up Dickens again and realize what I have been missing."

So, Monday, I will pick up "Bleak House."  I have been warned by many that this is a "hard" Dickens.  We shall see.  Maybe this will be my "foil" with Dickens but I doubt it.  I wasn't planning on loving Oliver Twist but I did.  So much so, that what I am reading now (which has come highly recommended and is well written) is nothing compared to Oliver Twist.  

I am loving my time with Charles Dickens.

Friday, April 6, 2012

Basketball

I have never been a big fan of basketball.  I can watch football longer than most of my friends who are girls, but a basketball game has never done much for me.  And, it hasn't been from lack of trying.  I was raised going to a lot of University of Colorado basketball games.  Basketball was on TV at my house a lot.  I have a brother, sister and dad who love March because of college basketball.  But for whatever reason, I could never get into it.

Also, my husband and I are short--really short, short enough that people notice that we are short people.  I have never wanted either of my boys or girls to want to play basketball because I know they will never be tall and I don't want them to love playing a game that they will have no ability to compete in once everyone goes through puberty and my kids are left many inches shorter than their friends.

So, basketball has never been on my or my husband's radar until recently.   While volunteering at my kids school, I noticed how much of recess is spent playing basketball.  In talking with my 6th grade son, I learned that basketball in its various forms (HORSE, Twenty One, Lightening, Around the World, etc.) was THE game to play at recess.  And while watching a few times during recess,  I noticed that in spite of his shortness, he is good.  My eight year old son is starting to want to learn more about basketball too.

So, this week, my husband and I bought a basketball standard.

Guess what?  I am interacting with my kids way more.  My 12 year old son and I have fun playing HORSE together.  We have intense family games of Lightening.  Our neighbor taught us "7 on the Line."  I am a pretty good shot (especially since we have it at its lowest setting at seven and 1/2 feet).  My 12 year old son is impressed with my shooting skills (all learned playing junior high and church basketball).  I can still do a decent lay up and my boys notice and care.  My girls join in and I hear them say, "I made one with 'nothing but net.'"  We laugh; we trash talk; we grab at each other; we come inside hot and sweaty.

So, no, my boys or girls are not going to be playing on any "big" teams.  And, likely, not even a junior high school team, but that is not the reason for this basketball standard.  This is about something way more important.