Here Comes the Sun

One of my favorite songs and quite appropriate......

     I am starting to come out of my chemo fog and slowly feeling better.  I can actually see the light at the end of the tunnel.  I just had my last chemotherapy treatment on March 6th.  I went back on March 12th for a check-up with my oncologist.  He talked with me for a LONG time about all the things we need to do: hormone treatment (complicated because of my PE and being on blood thinners), taking my ovaries out, getting another echo cardiogram - PET scan - CT scan, possibly changing from lovenox to coumadin, what to do about Gleevec (drug for my previous cancer), etc....etc......  He gave me so much information it was overwhelming.  It also didn't help that I felt AWFUL that day and was having pretty bad bone pain.  He was so excited for me to be done with chemo that he gave me a few hugs.  I really love my oncologist....he is a great guy.  He told me that I didn't need to worry about any of it now.  He was going to give me a big break to work on recovering and we would make decisions later.  I do not have another appointment with him until after my kids spring break...almost a month break......HOORAY!!!

     Some other things to celebrate:

          - I have a consultation appointment with a plastic surgeon to discuss my reconstruction options on April 22nd - I CAN'T WAIT!!!

         -  I got my results from my BRAC Analysis Rearrangement Test.  I do NOT have the breast cancer genes (BRCA1 or BCRA2).  This means that no deletion of duplication was detected in these genes.  If there was one detected that means I would be far more likely to get breast cancer or ovarian cancer than the general public.  WONDERFUL NEWS!!

          - I have started going on VERY SHORT walks at night with my hubby after the kids have gone to bed.  They are really exhausting and painful....but I am making progress.  The first night I walked to the end of the street and back (0.3 miles - I know that is sad).  Now I am walking around the block (0.65 miles).  Got to start somewhere.....

          - The bone pain is getting better and I have a little more energy each day.  I even had enough energy to de-junk my house a little, put away my St. Patty's decorations, and get out my Easter decorations.  Considering I literally have done NO housework in 5 months, this was a major accomplishment.

          - I have had great sleep the past three nights

          - I got my port out yesterday!!!!!!!!!!!  It is a little sore, but I am so excited.  It was a wonderful thing to have for chemotherapy, but oh man did it annoy me.  I couldn't sleep on my left side and it was uncomfortable.

 Here is a close-up of what my port looked liked.....kinda crazy.  If you think it is too much information or gross just be happy I haven't posted a picture of my mastectomy scar :)

 This picture looks like my back, but it is my left front side and I kept it PG

 Here is my port.  My doctor let me keep it - how AWESOME is that.  He made me promise I would soak it in bleach because it is a biohazard....still has my blood and fluids inside of it.  The nerdy science teacher in me is SO HAPPY.   I am going to put it in a jar and proudly display it on my desk when I go back to teaching.  I think it is crazy that that thing was inside of me.

 Here is to more good news and continued recovery.  I have a long ways to go, but one of the toughest parts is behind me.

Love,
The 1BW

Radiation: To Do or Not to Do

     Soooo before I even started chemotherapy my husband has been VERY against me getting radiation.  Every time a doctor would say it was a possibility he would strongly object.  I always had more of an open mind.  I felt if someone could argue a good case, backed up with  

 evidence I would do it.

     As I was nearing the end of my chemo my oncologist said that he was not convinced I should get radiation.  He suggested I go see the local radiologist and see what he had to say.  So we had a consultation with the radiologist.  I told the doctor I was there to see if I really needed radiation.  The doctor said of course I did and scheduled my first appointment to get started.  I was to go 5 days a week for 6 weeks.  He didn't back up  his claim with any studies or evidence. We asked him about side effects and he only told me the short-term effects.  He seemed to think there really was no negatives or long-term effects of radiation.  After the appointment I figured that I would get radiation.  The doctor gave me the impression that it was really my only choice.  But, Corey HATED the radiologist.  He said he felt like he had just heard a high pressure sales pitch.

     A few days later I had an appointment with my oncologist.  I told him that the radiologist said I should get radiation.  My oncologist exclaimed, "Why??  What evidence or data did he have to support this decision."  I told him he said I needed to because of how big the tumor was, how aggressive it was, and 2 positive lymph nodes.  My oncologist again wanted to know what studies there were to back him up.  I told him that he didn't talk about any studies or evidence.  My oncologist was not happy.  He told me I needed a 2nd opinion and then to carefully make the decision for myself.  He sent me to OHSU in Portland.  There was a radiologist there that he really respected and he felt that a research/teaching hospital would give me a much more open minded opinion than a radiology center.

    A few weeks later I traveled to Portland for my 2nd opinion.  First of all, let me say I was really impressed with this radiologist.  I will call her Dr. M.  Seriously, she was amazing.  Here are some of the things she discussed with me:

- If she just looked at my pathology report...at first glance she felt without a doubt I needed radiation based on my age, 2 positive lymph nodes, and the size of my tumors.

- BUT then she looks at the data.  She said the data is confusing.

There were 2 studies published in 1997.  Women with my pathology it was shown that radiation improved local control/recurrence and survival.  This created a whole new group of patients they didn't previously treat with radiation.  But, she said there were flaws in these studies. She said a lot of people now think that the study is outdated too, because chemotherapy and hormone treatment have improved greatly since those studies.   Since those studies more studies have been done to look at who specifically in that pathology group really would benefit from radiation.

- Looking at the data from the more recent studies she thinks my chance of local recurrence in the chest wall or lymph nodes is probably 10-12%.

- Dr. M said radiation would reduce that down to 3-5%.  BUT, it would probably NOT improve my survival.  She said my survival benefit would come from chemotherapy and really hormone therapy.

- She said if my tumors were bigger, if I was estrogen negative, if I had more nodes involved, if I was less than 40 years old she would have said radiation was absolutely necessary to survival because my chance of recurrence would have been much higher.  She said I am in a weird middle group.  That my case was controversial.  She said if you got a room full of radiology oncologists there were would be a LOT of discussion and disagreement about my case.

- She did say that radiation would be a benefit....a small one, but still a benefit.  But, that I needed to look at all the negative side effects too and then make a decision based on what was best for me.

Here are the negatives she discussed with me:

- About 20% of my right lung would be permanently scarred.  She said I probably wouldn't notice it unless I became a runner (that is funny - me a runner?)

- During radiation I would lose hair in my armpit, have sore ribs, and be tired.  She said I was young enough that I would bounce right back.

- It would also limit my breast reconstruction options.  It would make putting an implant in very difficult/impossible because the skin would be scarred and not very stretchy.   I would also have to wait a YEAR after radiation is over to start reconstruction.  YIKES....to be lopsided that long would be AWFUL.

- very small chance of causing thyroid problems

- very small chance of causing a brand new cancer

- Can cause soreness in the ribs/chest wall for a up to a year after radiation ends

She also talked about different breast reconstruction options.  There are some pretty neat options out there.  I asked her who she thought was the best plastic surgeon was.  She said she was biased, but she gave me a name of a lady at OHSU who she said did AMAZING work.

So....what did I decide???  After discussing it further with my husband we both felt that it was best for me not to do radiation.  I am sure there are people that would disagree with me, but I feel really good about my decision.  I have faith that I have made the right decision and I am going to go forward with my journey without fear.

Chemotherapy.....The Good, the Bad, the Ugly

 Now that I am on the other side of 5 months of HELL, I can attest to it taking everything I had and more.  Thank goodness for my faith, friends, and family.

 My first four chemotherapy treatments consisted of the two drugs Adriamycin and Cytoxan (AC).  They infused these poisons through my port every 2 weeks for a total of 4 treatments.  I was in a complete chemo fog, was ridiculously lethargic, was nauseous, had terrible raw mouth with sores, and basically felt pretty awful the entire 2 months. A few days before my next treatment I would start to feel a little better and then BAM they would poison me again.  I even had a double pulmonary embolism between my 3rd and 4th treatment just to make sure I was truly suffering enough. (see past blog post)

   Then on Wednesday, January 23rd I started a new chemo drug: TAXOL. I received this one every two weeks for a total of 4 treatments, just like AC.   This chemo treatment took MUCH longer to administer.  I would get to the cancer center at 9 am and wouldn't leave until about 4 pm.  The first treatment I was there until 6:30 pm.  For the taxol treatments I got my own room with a bed.  They had to pre-medicate me with a bunch of anti-histamines and steroids to prevent an allergic reaction.  This made me SUPER SLEEPY!!!!  The first time they give it to you a nurse has to sit and watch you for the first 1/2 hour to make sure you are not having an allergic reaction. Taxol also can cause tingling in the hands and feet.  The first time I got taxol my fingers started tingling so they had to slow the infusion down.

  The first few days after treatment I felt ok. I was really tired, but  I thought, wow - maybe this one will not be too bad.  OH BOY WAS I WRONG.  The bone pain started on Saturday afternoon. It was horrific. I pretty much did not leave my bed for over a week.  Pain pills were my friend.  They didn't completely take the pain away, but they helped me not care about it as much (does that make sense?).  Taxol also gave me horrible headaches and some other nasty side affects that no one wants to read about - trust me....nastiness.

     My 2nd and 3rd treatment were about the same.  I would come home and pass out for a few days, have bone pain for a few more then I would feel not too horrible for 4-5 days before my next treatment. 

    My 4th and LAST treatment I thought would be like my 2nd and 3rd.  I was wrong....very wrong.  I pretty much stayed in bed in pain for the full 2 weeks following treatment.   It was horrible.  I was exhausted, but would stay up all night.  Ambien was NOT working.  When I did fall asleep I would only sleep for 2 or 3 hours at a time.  I really thought I was going crazy.  When I would get up and walk around I would get light-headed. my pulse would race, and I would feel light-headed.

Let's just say, TAXOL...not a fan.

   I also felt like chemotherapy was making me stupid.  I felt like my brain was not working properly.  I had a hard time completing thoughts.  It was even more difficult to carry on a conversation with someone.  I would lose track of what I was saying.   For example, I LOVE reading.  Before chemo I would read all the time.  My dream day consists of doing nothing, but reading.  During my 4 months of chemotherapy I didn't read at all.  I would try to start a book and I just could not do it.  My brain would wander off....it was the weirdest thing. 

  The other side effect of chemo that I had with both treatments was the feeling of YUCK.....It is really hard to explain.  I could feel the poison in my body....I always felt full of chemicals and well yucky (see I told you I couldn't explain it).
Another fantastic side effect was hot flashes and night sweats!!!  All you menopausal women out there can relate.  All of a sudden I would feel like I was melting.  If I was in public that meant taking off my hat or wig.....I would usually get some funny looks.  At night I would wake up sometimes several times at night drenched in sweat.....so NASTY!!!

    For most of the 4 months of chemotherapy I was really hungry.  Not many things sounded good to me but when something did sound good I would eat a ton of it.  It is the weirdest thing to feel nauseous and hungry at the same time.  I also was extra hungry at night-time.  Some nights I would gorge myself with a  ridiculous amount of junk (chocolate, cheesecake, chips, etc).  Before chemo I was a Diet Dr. Pepper addict....seriously I was in love with it.  When I was on chemo I couldn't stand the taste of diet soda so I switched the full power Dr. Pepper.   I gained so much weight laying around for 4 months eating way too much unhealthy food....I was kinda disgusting.

So that is a short summary of the some of the bad and ugly parts of my chemotherapy.  So what in the world was the good part??????  

Hopefully the good part is the POISONS  MURDERED any lingering cancer cells in my body AND that it GREATLY REDUCED my chance of my aggressive cancer coming back. 

 Oh PLEASE do not come back.
I also was told I would lose every hair on my body including my eyebrows and eyelashes. I did lose most of the hair on my body, BUT I never lost my eyelashes or eyebrows - SO FAB!!!  I also did not need to shave my legs or armpits the whole time....SO RAD!!!

The best part though is I AM DONE WITH 4 months of chemo!!!!!!  Hooray!!!!!

My Dad, My Aunt, and Cancer Lessons Learned

 I miss my dad every single day.   STUPID - NASTY cancer (melanoma) took my dad from us way too soon.  He was only 51.  I was 26.   I had to find a picture of Berkeley's grandmas and grandpas today for a school project and found these pictures.  LOVE these pictures.....they show totally different things about my dad to me.  The top pic he is wearing his favorite fishing hat up at Slide Rock in Arizona.  My dad loved being outdoors, fishing, and going on adventures with his family.  You can also see the twinkle in his eye.

This picture shows the rugged, tough cowboy side.  My dad was born and raised on a ranch in Wyoming.  I was born and raised on cattle ranches in Arizona.

 This picture melts my heart.  This shows the love he had for family.  You can feel it when you look at his face.  This is his younger sister Tricia.  She also died from STUPID cancer (multiple myeloma) seven years after my dad died.  My aunt Tricia was a beautiful, loving, FUN, TOUGH and talented woman.

  I am still bitter about my dad's death in some ways, have made peace in other ways...........

Not really the point of my blog post.  

Since I have been battling for the 2nd time I have thought a lot about my dad and Aunt Tricia's battles with cancer.  I see them through different eyes.  My cancer prognosis is much better than theirs.  I have not had to deal with all my doctors telling me that I will die soon and there is nothing left to do.   I will recover.  But, I do see them in a different light....they are even more important to me than before.  They are even more AWESOME to me than before....if that is even possible.

  BUT, I understand a tiny bit more how difficult and excruciating their battles were.  They fought a HUGE  battle of physical, spiritual, and emotional pain.  They are truly my heroes.  They really have saved me from myself (another long story).  When I think the pain or loneliness of cancer is too much I think of them.  If they could keep fighting in MUCH more DIFFICULT circumstances, so could I.  I say a little prayer and feel grateful that my battle is a less difficult one.  I still have years to live with my family.  I don't have to tell my kids I am dying and say goodbye.  Now that I am a parent this breaks my heart on a whole new level.

So enjoy these pictures of two of the most important and influential people in my life.

THEN take some advice from a woman starting to come out of a 4 month chemo fog.....

 #1: Go hug your loved ones and tell them that you LOVE them 

and you are GRATEFUL they are in your life.  Life is short and unpredictable

#2:  Thank the Lord for your blessings.....trust me even when life seems to be hard - it could be WAY worse.  Complain a little less...recognize the good a little more.

#3:  Reach out to someone going through a difficult situation.  Give them some act of service, a gift of cheer, a note of encouragement, or a big hug.  Do something.....people going through truly tough times usually will not ask for your help or attention, but they NEED it and love it when they receive it.  I have learned this lesson the hard way.  

 JUST DO IT!!!!

Last Day of Chemotherapy

Today is my last day of chemo....it does not seem real.  Just when I thought it would never end, it has.  I am pretty excited that after the next two weeks I should start feeling like myself again - HOORAY!!!!  It is wonderful to be done with one of the nastiest steps in my breast cancer journey.
My husband for the past 7 treatments took off work and hung out with me the whole time.  Unfortunately he is home sick today and I am on my own.  He is so sick that he has quarantined himself the past few days so I would not get his nasty bug....what a great guy - love him :)

I know that laying around for the past 6 months has made me EXTREMELY OUT OF SHAPE and SUPER WEAK.  It will be extremely difficult to get my strength back due to my scoliosis and arthritis,

 but I CAN DO IT!!!

   I turn 42 in about 2 weeks and feel very blessed to get a birthday present of no more chemo.

Now I move on to hormone therapy, radiation (to do or not to do), more tests, figuring out my blood thinning regiment, and reconstruction surgeries..........

the fight will go on!!!!!!

My Grandpa Jolley

Click Here for Grandpa Jolley's Slideshow

My Grandpa Jolley passed away on February 21st at the age of 92.  I made a slide show of his life for his funeral.  It is not a perfect slide show.....but it was made with lots of love.
 Click on the link above and it will take you to You Tube video.  When you are watching the video keep in mind my grandpa's name is Ron, my dad's name is Mike, and my grandma's name is Beulah.

I also wrote the following to be put in a memory book.

Memories of Grandma and Grandpa Jolley

I had the privilege of living next to my grandparents for 29 years of my life.  I have so many wonderful memories and will attempt to convey some of them the best I can.

When we lived in Arlington grandma & grandpa would watch me every Wednesday night while my parents were at church/mutual.  Grandpa taught me how to eat ice cream and let me sit on his lap for hours.  His whole life he would remind me of the indentations on his legs from my bony bum – he said that showed true love.  My dad was the Bishop when we lived in Arlington.  My mom & grandpa loved to tell me how it took both of them to keep my under control during sacrament meeting while my dad was on the stand.

When we lived on Diamond Ranch (and hour west of Tucson) I remember when grandma would come out of her house in Tucson to feed the cats.  Oh my, there would be 30 cats jumping out of the trees to get to the food – it was so amazing.  I got my love of cats from my grandma.  I loved cats so much that I remember eating the cat food at grandma’s house.  Grandma was a very neat and organized woman and a great cook.  She taught me how to make a bed with hospital corners and made the best homemade noodles in the world.  I also would tell my mom that grandma’s cole slaw was better than hers (even though it was the same recipe as my mom).  I remember rounding up the cattle and helping my dad and grandpa with the branding.  They would let me use the shocker to lead the cattle along.

Grandpa was such a fun loving man who always had a twinkle in his eye.  I will never forget going to the circus with him.  We always had a blast and he would buy us all the treats my parents were too cheap to buy.  The big cotton candy and balloons were my favorite.  I always thought grandpa was so rich because he was always slipping me a $20.  He also had a way of doing it that made you think he was only doing it for you and you were his favorite.  Family holiday gatherings always included grandpa squirting whip cream up our arms and teaching how to put olives on our fingers….oh how we laughed. 

Grandpa also was a rough and tough cowboy with the biggest heart.  He was so easy to get him to cry.  I remember going to church when I was 13 and my grandpa was there.  Church started and he was bawling.  A few minutes later I found out it was because my dad was about to be called to be Bishop again.  By that time we were all crying…we had inherited the “Jolley Crying Gene”.  If grandpa started crying I would too.  He loved my dad so much.  They were best friends.   I remember my grandpa trying to give prayers after my dad passed away and he couldn’t do it.  He would start bawling and someone would have to finish the prayer for him.

I remember watching grandma putting her tinsel one strand at a time on her Christmas tree.  There was never a Halloween without going to grandmas and getting a popcorn ball.  Grandma never liked to reveal her true age….she was 29 for a really LONG time.  One time when I was in elementary school my mom pulled grandma aside and told her she might want to tell me how old she really is because I was telling everyone at school that she was 99.  I also remember her telling me she was 29 and me responding, “How can you be younger than my dad?” I always thought grandma looked so skinny and put together.  I would tell her all the time how skinny she was and oh boy did that get a smile out of her and then she would usually disagree with me.   I remember when anyone would tell her that they loved her she would say, “Ditto”.  I also loved doing puzzles with grandma and I still do a puzzle every Thanksgiving and Christmas in her honor.  Grandma loved cards and taught me how to play Solitaire.  I also remember one of our family reunion camp outs when we played a HUGE game of Nertz and how good and quick grandma was at the game.  I also remember her being upset with Clint and Scott – the big cheaters.  When I was a teenager I went to the some concerts with grandma at the State Fair.  One time we saw George Strait….grandma LOVED him and thought he was so handsome.  She loved her country music.  I also love going to Piccadilly Cafeteria with grandma & grandpa and I would usually get turkey, mashed potatoes with gravy, corn, Jell-O, and a dessert.  Grandma will always be known as the grammar police.  She never let us get away with making silly grammatical mistakes.

Of course no one can forget this classic grandma & grandpa story.  Grandpa after saying some "colorful" words in his story telling grandma would exclaim, "RONALD"!!  Grandpa would reply, "It's OK, I'm just quoting,"
Grandma would snap back, "but, you’re quoting yourself." Another classic grandpa moment was anytime there was a long prayer grandpa would say, “He sure passed up a lot of good amens.”

After I graduated from BYU I moved back to Arizona and worked at JY Trading for a few years.   I can’t describe how grateful I am that I got to work with my dad and grandpa every day and get to know them on an adult level.  Grandpa would come to work almost every day with his Whataburger breakfast.    Grandpa LOVED to drive.  He was always the first to volunteer to go meet with a vendor or customer.  I remember getting into his car and grabbing some Aqua Fresh liquid center gum on our way out to lunch.  Grandpa was a “human calculator”.  You could give him two big numbers to multiple and he would give you the answer before you could even punch it in the calculator.  It was so fun to test him on that.  The best part about working with my grandpa was all the stories.  Grandpa was the absolute BEST story teller – EVER!  Now that I was an adult I would get the “full” and “colorful” version of all his favorite stories.  One of my favorite stories he would tell was when they were considering buying a casino from some mobsters in Las Vegas.  He told the owner that they were not going to buy the casino because it would not be a good thing for his family.  But, the mob guy liked grandpa so much though that he “offered” to “take care” of any enemies for him.

Grandpa was such a tough and strong man.  One time a man came into the office and asked if someone could help him load some dog food bags into his truck.  Grandpa was the first to volunteer and went outside and loaded them all for the “old man”.  As they were talking the man commented that he was in his 50’s and just didn’t have the strength to lift the bags.  The man asked grandpa how old he was and grandpa then commented, “Oh hell, I am 76.”  There was also a time at one of the bakeries where there was this drunk guy messing with one of the roll-offs and causing problems.  I remember Ernie coming back and telling us how grandpa “took care of that guy”.  Let’s just say it got a little physical and grandpa was the winner.

One day at work grandpa pulled me aside and started crying and told me I was one of his best friends and how he loved working with me.  I will NEVER forget that moment.  Grandpa always knew how to make you feel special.

When I worked at JY Trading I also became aware of grandma’s bookkeeping skills.  I was in the process of converting the business books to the computer and spent a lot of time going through grandma’s old books of the business.  She has the neatest handwriting and was so meticulous. The books were a work of art – no joke – so beautiful.  I would call and ask her questions all the time.  My dad also told me that she would often argue with the bank over a one penny mistake until they fixed it.  She was always right and didn’t make mistakes. 

When I was 20 years old I became a vegetarian and a democrat.  I knew this was not going to be a popular choice in my cattle ranching, conservative family.  When grandpa found out we were eating Thanksgiving dinner at their house in Tempe.  He said, “Oh hell Gina.  You are the first vegetarian and democrat in the history of the Jolley family.  Good thing I still love you in spite of that.”  Grandpa was laughing about it, but oh man grandma was mad and glared at me J.  After this anytime we had a family meal with grandpa he would show me his plate LOADED with meat and would tell me with a grin on his face and a twinkle in his eye he was eating my share and that I needed to eat his share of vegetables.

My grandpa was a fighter.  I taught me the value of hard work. He felt that only hard working people were of any value. My husband Corey worked for JY Trading for a while driving a roll-off truck.  One day my grandpa pulled me aside and basically said, “Gina I thought you married a lazy guy, but I was wrong.  He is such a hard worker and I love him.  You did good.” 

When my father was in the hospital dying from cancer the whole extended family and friends gathered and rallied around.  My dad had slipped into a coma and had been in a lot of pain.   There was no more fighting to do.  My dad was given a blessing a release by our stake president. None of wanted him to die, but we all knew it was time, except grandpa.   Grandpa was so ANGRY….I have never seen him so upset!!!  He told off our stake president up and down with an assortment of colorful words about how his son was not a quitter.  How he needed to keep fighting.  Some might think this is a horrible memory, but it will always be a reminder to me of two things.  One, my grandpa was so full of amazing love for his family.  He loved my dad so much he could not bear for him to go. Secondly, he also really believed in never quitting and fighting the good fight – to never accept defeat.

I love grandma and grandpa Jolley so much and will miss them every day until we reunited once again.  I feel so blessed that they were such a big and powerful influence in my life.  I would not be the person I am today without their unconditional love, helpful advice, and wonderful memories they gave me.  I will also never be able to thank them enough for raising such a wonderful man that I got to call my dad.  My grandparents and parents are my heroes and I love them with all my heart and soul.