Big Girls Don't Cry~

This is totally a lie!  Frankie Vallie and the Four Seasons had it all wrong!

Big Girls Do Cry

 * When they see themselves for the first, second, third, fourth... time after a bilateral mastectomy

 *When they have gained 10 pounds in a week after losing 40 over 6 months

 *When their legs are totally swollen

 *When they run out of pain meds and the pharmacy won't refill when the doctor calls as they want a written prescription and he is out of town

 *(this is fun) when the ole' bowels are on strike

 *When the tubes hanging out of her body attached to the drains gets pulled...

 *When her grandbaby visits and she CAN NOT hold her/him in her lap!

 *When everyone tells her that she is so strong and so brave and she knows she's not. She doesn't want this to be her anymore than anyone else does.

 *When the old nemesis "discouragement" shows up

 *When she realizes it has only been 26 days since the diagnosis but it feels like a lifetime

 *When she sees that everyone elses life is going forward and she feels trapped

 *When she prays

 

Of All the ROTTEN Luck!

December 2, 2011... I get a text from my son-in-law saying that Neil Diamond tickets are available to purchase for his July 28th concert in Salt Lake City. 

I LOVE Neil Diamond!  I have since I was 10 years old and heard Solitary Man.  Neil D has come to Utah before but I was never able to afford tickets... never saw him.  FINALLY the chance to see him in concert was here. I saw the Rolling Stones a few years ago, Elton John and Billy Joel as well as REO and Stykes. BUT Neil has always been at the top of my list to see live, in concert. I have just been waiting.....

My kids grew up listening to and singing Neil Diamond songs at home and on road trips.  We wore out the VHS tape of "Jazz Singer" (ok Neil is not a good actor but his singing was marvelous!)  Rick and I sang together "Forever in Blue Jeans" loud and strong when it was only the two of us.

I guess you can tell where this blog is going.

CANCER, again!  BAH - HUMBUG!  I'm just not feeling up to sitting for hours in a stadium - being bumped by people that don't know why my shirt fits funny and why I'm wearing protective hockey gear.  I just don't feel that my drains and I would have a bonding experience at Rio Tinto.  It sounds more painful.  And I'm tired ... and sore ... and now I'm a tad grumpy.  

But Neil - you are still one of my all time favorites.  I love most (sorry a couple I just didn't like) of your songs. 

I AM I SAID

To No One There

and No One heard at all

not even the chair

Some songs continue to have new meaning at different stages in your life. 

I will miss you tonight, Neil!! 

   

   

The Tubes (not the subway in London)

WARNING: This post contains pictures that might be disturbing to some (especially disturbing to me!)

My daughter mentioned to several people that under the influence of drugs, I am quite amusing. Apparently, I came up with being hit in the chest with a dodge ball in 4th grade and this pain did not compare.  This was in reference to the pain in my chest after my surgery.  I have yet to come up with comic relief for the tubes and drains attached and flowing from my body.

Tubes and Drains number 1 and 2:   On each side of me, I have the attached Tubes  that pull fluid into the Drain.  The Drain is in place to prevent fluids from building up and causing too much swelling and bruising.  Well, apparently these "drains" haven't heard of ITP peeps as bruising is our middle name.  As it's a little difficult right now for me to manuver all these things... Scott will empty the drains about every 8 hours. He also will "strip" the tubes which means he'll slide his fingers down the tubes pushing whatever is in the tubes into the drain.  I generally hold onto the top of the tupe which is connected INSIDE my body so it doesn't get pulled while being stripped.  A nurse brought tears to my eyes one day as she didn't do that and I thought she was pulling out the tube... believe me - not fun. 

The next gadget I have attached to my body is a "pain pump".  It contains Lidocaine which helps control the pain in the surgery area. It is attached, once again, directly into my body.  I have a bag that the Tube runs to which holds the pain pump (pictured).  This runs constantly.  Once the pump swivels up to the size of a plum - the Tubes can be removed.

I also had a "Bard Power Port" placed during surgery.  This is where the nurse will feed the IV into me for the Chemo treatments and also take blood samples, when needed.  This avoids being stuck with a needle multiple times especially when the veins are weakened from chemo.  This was placed under my collar bone (no picture) and is under the skin.

The port is attached to a small, soft tube called cathether.  The cathether is placed inside one of the large central veins that take blood to your heart.  When a needle is inserted it creates "access" to your bloodstream.  Because the port places the chemo directly into your vein, the chemo mixes better in your blood and is less harmful to your veins. 

For some exciting reason, I also received a bracelet, key card and ID card for the Bard power port that I'm to have with me at all times.  Apparently this is to alert any medical staff - should I be involved in an emergency - that I have a port and what type. 

So there you have it for today... my mechanical report.  Hopefully, if all goes well, I will be free of all these devices except the port by Friday, August 3rd.

There's No Place Like Home!

I made it throught the roughest part so far.  I was at the hospital at 11:00 am on Friday - the 20th - to get "shot up" with radioactive dye so my lymph nodes could be discovered.  Scott's brother, Bruce, drove up from St. George the night before and along with Jenni  and Dyson went with Scott and I to the hospital.  After a little bit of walking around we were directed back to the radioactive peeps.  Vickie introduced herself and called me "little Jeri".  (I hadn't hear that in a while)  I was met at the door by Ralph Cornell, whom I still call family. As he hugged me I burst into tears.  (I had been trying so hard to maintain my control.)

After the 'shoot up' we went to Same Day surgery and enjoyed the relaxation of that room.  Because lymph nodes were coming out of both arms, I was not able to have the IV in my arm.........  the FOOT. 

Around 2 pm they wheeled me back to surgery. Last thing I remember was telling the nurses why I wanted TEAL toenails.

Surgery was about 5 hours.. and I am sore!  Not like my splenectomy as my legs are great.. but sore from the chest up.  The surgeon also install my port to be used for chemo in a few weeks. 

I received so many beautiful flowers and cards from such wonderful family and friends! They meant so much to me!!

The nurses and aids at American Fork Hospital were so kind! I couldn't have done it without my family visiting, calling and checking on me several times a day.  Or my friends and neighbors (who have already started bringing in meals) or my long distance relatives who called or, in Bruce's case, drove to Lehi to be with us. 

ONE down.... more to go... but this was a BIG one! Here I am just getting home.... there's no place like home!!

Watching the Clock~

WOW... it's 11:11 pm - Thursday, July 19th.  TWELVE MORE HOURS and then I will be cut, sliced and diced.  Then this cancer thing becomes reality.  I am now another statistic in the world of cancer. 

About 8:30 this morning I decided I could not be at work another minute.  I HAD to get away... to have some moment when cancer wasn't crowding every thought - every second of every minute.  But that didn't happen... not today.  CANCER was there lurking around every phone call, every test and every friendly face.  I cried several times today. AND the stupidest thing I cried about was a ZIT in the middle of my forehead.  ARE you KIDDING me??  I'm going to lose my "girls" - part of my body tomorrow and I'm getting a ZIT?  Can you say

M E L T D O W N?!

So I decided I needed to STOP watching the clock and do SOMETHING to set me apart tomorrow.  I called my lovely daughter and off we went..... shopping for nail polish!

 

I think my new nail color will give me a DISTINCTIVE look in surgery on Friday. The nurses will say... "do you remember that nice gal with the teal toenails?" instead of "do you remember that lady whose breasts we removed?"  See what a difference a color can make?

I feel in a fog today... actually the past 16 days.  Fog doesn't really explain it... it's deeper and more sinister then fog. No one, outside of my family, seems to see it or feel it like I do.  People just don't realize.....  

There is a Four-Way stop by my house. I have watched drivers get mad at other people that don't "wait" their turn. They scream, honk their horns and flip off the other driver.  I want to yell.." Really People? Is that all you have to be mad about.  I. HAVE. CANCER!"  I watched a teenage girl insult her mother at Target the other day because she didn't get an item she wanted.  "Are you nuts??  My grown adult children have CRIED because they are worried about their mother.  Because their MOTHER. HAS. CANCER"  I watched the RUDEST exchange of words between a couple at Gateway on Wednesday.  "Seriously?? I have a sweet husband whose heart is broken because his WIFE. HAS. CANCER." I want to scream at these people and tell them to appreciate not having a clock ticking for them and not living in the fog. Would they hear?

I continue to watch the clock.... ticking off the minutes as the fog in my life gets so thick there is no place to go but down the path I don't want to walk.  It's almost midnight now... soon it will be July 20th - surgery day.  I don't know what to expect. I don't know what I will do or how I will feel about... anything.  I just know that even though I have countless family and friends that are thinking of me and praying for me.. I am living this journey as no one else has - as I watch the clock tick away the minutes hoping the time will soon come again when I feel normal and come out of the fog.   

Tell Me it's a Dream...

Today I met with the plastic surgeon that will be "fixing" me.  He said that most of his patients liked him because he made them "feel" better while the surgeon and oncologist makes them "feel" worse.  Ok... I can buy that except....

I found out that my surgery will be from 3 to 5 HOURS long.  THAT is a long surgery.  That I will be sliced and diced and lipo-sucked during that time.  From my clavicle to my hips I will be mutilated (my words not his).  I will have 2 drains.. for 2 to 4 weeks.  I'll have some contraption wrapped around me, I'll have a pain pump with LOTS and LOTS of pain.  Did I say LOTS OF PAIN?  I about threw up after Scott and I left his office.

We then went to UVRMC for an ECKO of my heart.  For those that don't know.. it's like a sonogram for your heart.  They can see the heart valves and the arteries as well as the number of times it pumps the blood.  Pretty interesting.  So this was a "baseline" of how my heart looks today.  The doctors will be monitoring my HEART as one of the drugs I will need to take for ONE year can damage MY HEART.  Yeah... this is fun...

I'm not happy today.  Just two weeks ago I was thinking how wonderful everything was going.  My cousins are getting together for a reunion, my kids are coming in August for a week to visit AND I have tickets to Neil Diamond on July 28th.  One day - one phone call - that all changed.  I feel like a defect.  Soon I will not look like me. I have 3 days left of looking like who I've been for years and years.  And I'm scared. I don't like pain (who does, right?)  but the brave face must be there to keep everyone else going.

I had a dream the other night that I had to get in a pool of eels for my treatment. But first I had to eat an eel so they wouldn't kill me.  I was SO glad to wake up from that dream!! I wish I could wake up from this one.

Sometime Earlier - Seems Forever Ago

May 2012 - Orlando, Florida.  I found a lump.  I didn't think too much of it.  Gynecologists will tell you to check it again in a few days.  If it's still there, give it a few days later.  If you can still feel it after a week or so, visit your doctor.  By the end of May nothing had changed.  I knew I had an appointment with my GYN in June so not to worry.  June came as did the appointment.  I was told to get a mammogram as soon as possible.  So soon, in fact, the doctor wanted to make the appointment for me.

Once in for the mammogram, neither the technician nor the radiologist could really "see" a problem.  The next step was a sonogram.  The radiologist stated several times that it looked "odd" and "not good" but he didn't think it looked like cancer.  He gave me the option of going home and "watching" it for a couple of months or have a biopsy.  I was there so opted for the biopsy.  Don't get me wrong.. I'm not crazy about having a biopsy... they are not pleasant! But who wants to watch a lump for several months??  Besides, I had a biopsy in 2009 and it was benign so I wasn't even nervous or worried.  SURPRISE!

In the past 10 days I have met with the surgeon (Thursday), had an MRI (Friday), phone call from the surgeon with bad news (Monday - 3 more possible tumors), had 3 biopsies (Wednesday), received MORE bad news from the surgeon (Thursday), brought 2 wigs and 1 scarf (so far) in preparation for chemo (Friday) and FINALLY received some good news (Friday). 
 
This is what I've learned over the past week.   I have Grade 2 (not the same as stage) Invasive Ductal Cancer.  It is invasive as the cancer cells have left the duct and are moving.  Cancer has a grade for movement. Grade 1 is moving but slowly.  Grade 2 is moving faster.  Grade 3 is all over the place.  My tumor is approx 2 centimeters which is about 1 inch long.  The "good" points about "my" cancer (apparently I'm now owning it) is that this is the most common breast cancer so there are some great drugs out there for treatment.  Prognosis is good.  GOOD news received was that the other 3 possible tumors were BENIGN! So glad... at least I know my body isn't full of tumors...knock on wood!

The "Not So Good" news is that I am HER2 positive AND EP receptor (estrogen - progesterone) positive.  

In about 20% to 25% of breast cancers, the cancer cells make too much of a protein known as HER2. These breast cancers tend to be much more aggressive and fast-growing. I will receive an IV drug called Herceptin during my chemo treatment and then once a month for a year once chemo is completed.  Herceptin has fewer immediate side effects than chemotherapy -- for example, there is usually no nausea or hair loss. However, there is a  real risk of heart damage and possible lung damage. Hence an ECKO, to get a baseline of my heart, prior to starting the drug.

About 75% of all breast cancers are “ER positive.” They grow in response to the hormone estrogen. About 65% of these are also “PR positive.” They grow in response to another hormone, progesterone. If you are positive with both, you are considered EP receptor positive.  I will start the endocrine treatment after my chemotherapy is finished. This is designed to help prevent recurrence of the disease by blocking the effects of estrogen. Right now the plan is to take the drug tamoxifen every day for FIVE years. 

I start my road down cancer street with taking 1/2 water pill every once in awhile as my only prescription drug.  Amazingly, I will be filled with all kinds of toxins and poisons for who knows how long.  It's a miracle to me that poison can save your life!  One thing that I have yet to discuss with any doctor is that I am already auto-immune compromised due to NO spleen. When I asked my former (who I will NEVER go back to) oncologist what problems I could encounter without a spleen... her answer was "nothing unless you get cancer"...... OH GOODIE! 

This is what is coming up next week.  Meet with plastic surgeon in the morning and have an ECKO on my heart in the afternoon on Monday, July 16th.  Meet with my surgeon who is doing the operation on Tuesday.  I'm sure there will be more coming but surgery is scheduled for Friday, July 20th.

The Day Our World Changed

Doctor: "I have some concerning news to tell you. Would you like to come into the office?"
Me: "No. Please tell me on the phone."  Doctor:  "It is cancer. I'm sorry".

At that very moment, those three words, "it is cancer" changed my life, Scott's life, my children - their spouses and my grandchildren's lives.  None of us will ever be the same.  

I decided to write this blog to explain and update what is happening with us (mostly me) during our fight with a great evil - CANCER.  I have been blessed (and I really mean blessed) with a wonderful family and many, many friends that have called or written Scott or I with their love, support and prayers. I am so grateful and have felt so touched by so much kindness.  Thanks to each of you!  Many have asked for updates... this might be the easiest way to get the word out.  Here is our story.........