Sunday, August 25, 2019

Melodee Turns 40!

I honestly did not know if I would make it to this age, due to my fight with cancer. but I DID IT!!!



I also decided to throw a fun party


On the day of, I took it easy.  






Not quite the same face mask, but it's helping me look younger than I am.


 for the party, I found a favorite photo from every year to hang.




 My two bestest friends flew in to surprise me!!!    We took a break from party setup for some pedicures.







Rosa's for lunch!


Back to the party



PARTY TIME!!!



















Toward the end of the party, my sister, Emmy, walks in!  Another amazing surprise!!






Woke up to a Louisiana surprise.  My friend, Karlee, got me.






Another surprise:  a woodworking class!!!!



















Chrystal had to leave first:




The rest of us dined on Italian:




















And, at Chuy's, where my church ladies threw me a luncheon.  








 After an amazing birthday weekend, everyone went home.  I'm so thankful for the fun memories.










Tuesday, August 13, 2019

Labs, Herceptin #59, Zometa + Dr. Cole + Fellow

 It's been quite awhile since I had an actual appointment with Dr. Cole.  So long, in fact, that my nurse, Mike, began to think that my so long from the last appointment of, "see ya'll next time, unless I stroke out!" might have come true.  He made sure I knew that he was worried about me....but he only worried for maybe 15 or 20 minutes.


Dr. Cole has a student doctor following her around, so several people made sure I would be ok if she came into my room, as well.  I am all about supporting more female oncologist who chose to learn from good ones.  As my nurse reminded me, "We've got to make sure we have the best, so they need to be trained by the best!"  [Flashback to the secretary's voice over the speaker in my room:  "Mrs.  Cooper, your student teacher is here!"  *me: [immediate shock and bewilderment] "I don't have a student teacher."  secretary: "Yes, you do."  It was the complete wrong semester for me to take on a padawan, which I made clear to my principal, and she was reassigned.  Now, however, I wonder if first assigning her to me was a sign of trust from my principal, that she knew I was one of the best.]

I digress.

My appointment went well.  Nothing to report except BCBS still won't cover Perjeta.  Their latest excuse is that while taking the drug, cancer came back, therefore proving that it is not necessary, as it does not prevent cancer in me.  What they failed to recognize is that only my brain has had any change in the last several years.  Nothing from the neck down.  Could it be that Herceptin AND Perjeta are protecting my body and fighting that nasty disease away to the best of their abilities?  There are limits to where they can fight, as they cannot cross the blood-brain barrier.  It's that dark, shadowy place for these drugs, but cancer cells like it.  And, since estrogen and Her2 can exist there, cancer has something to feed on.
But, those doctors at BCBS must know SOOOOOOO much more than I do about effectiveness of expensive drugs that they don't want to pay for.....

 


Next, I had my infusion of Zometa, a once every 3 month drug that helps with my rickety, old bones, AND Herceptin.  



Since I know have a much shorter treatment time, it's not as easy to conceive and create a blog post while under the influence.  Luckily, I spoke in church this past Sunday, and I was pretty happy with my monologue.  I thought I'd share it here:

*for those who might have been part of any of these examples, the exact words might have been adjusted to fit my story.*


We recently returned home from a beautifully exhausting family trip to Yellowstone.  The travel plans included a flight to salt lake city meeting up with the rest of my family, then renting a car for the journey north.  
As my Dad helped me move something out of the trunk, he asked how I was doing.  ‘fine,” I sighed, “but it’s been a rough 48 hours on little sleep and traveling across the country with kids isn’t always the easiest.”
He chuckled a bit and then attempted a quick guilt trip.  Do you realize how lucky you are to have flown 1300 miles across country in just 3 hrs!?  Imagine if you had to come to Utah with the pioneers.  It would have taken months to travel the same distance and you would’ve had to walk, and walk, and walk, and walk, AND WALK.  
*for those not of my faith, there is a children’s song that uses this phrase.*

Always the child to want to give my father a taste of his own medicine, I replied, yeah, dad, but your comparison doesn’t hold up in my case.  If I lived back in pioneer times, cancer would’ve taken me long before all that walking would have!

Most of us aren’t called to walk the plains.  We have other trials and have been given different talents in order to walk our paths.  

Craig C. Christensen said, “Heavenly Father knows all about you.  Your strengths, and weaknesses.  He knows perfectly who you are, but he also knows who you can become.  And with that knowledge, he has placed you here now, At the exact place and time in which you can do the most good with the talents and gifts he has given you.”

Doing all this good will help us to stay on the path to Zion.  These good things might include having a home that feels like heaven on earth, being part of a church family, trying to build a community full of charity, visiting the temple worthily as often as possible to feel the spirit there, and to move forward with the goal to make it back to our heavenly home.  Just like all that pioneer walking, we are called to press forward with faith, until our journeys are complete.

But, how are we able to keep pressing forward on the path, when life is so full of challenges and we just want to stop walking? 

 We definitely don’t make it all at once, or on a jet plane.  It’s one foot in front of the other, one drop in our lamps at a time, line-upon-line, slowly working on talents; not burying them in the ground.  It’s walking our walk, even when it’s lonely, every day over and over and over and over AND over…until it’s finished. 
   
It’s fitting that I was asked to speak on this principle of enduring to the end and ways  to keep moving toward Zion because I have been walking a difficult path for quite some time.  

Six years ago next week, I was waking up from major surgery and experiencing the worst pain of my life.  Much of the tissue from my lower abdomen had been moved up to replace what had to be removed from my chest, due to cancer.  I felt like a cut-up-and-stitched-back-together monster, yet helpless, incapable of doing anything on my own, unable to breathe without holding a pillow tightly to my chest, unable to use my arms to adjust my body in the hospital bed [or nearly anything else, for that matter]  surviving only on pain medicine and help from others.  

For weeks after leaving the hospital, I had drains coming out of my body, which felt like tentacles. I couldn’t shower independently or feed myself, or walk unassisted.  I had to have people care for my children 24/7.  This, from a formally strong and independent and busy mother of three boys, who were ages 6, 3, and only 18 months old at the time.  
Giving up, however, was not an option for me.  I had to keep going for my family and myself.   At first, even small steps felt impossible, but my new life became easier over time.  

As I continued to follow the physicians’ instructions, I was slowly able to regain strength, to remove the drains, to shower on my own, to change my babies’ diapers, to dress myself, to see my scars clear up somewhat, and even clean my own bathroom, among other things.
  
Then, two 1/2 years ago, cancer reached my brain, and I was told I had less than a year to live.  Stephen recently admitted to me that when I left the room for radiation tattoos, the doctor warned him that I’d be lucky to make it 6 months.  All this time later, and I’m still walking!

I realize not everyone has experienced this trial, but all have suffered in various ways.  It is up to us to endure in our own journeys, to not shrink, to keep walking and seeking Zion, but how?  

Of course the typical answers come to mind: daily prayer, scripture study, service, temple and church attendance, incorporating Come Follow Me, and so on.  Sometimes, though, “All the Things” at once is overwhelming. Like, after a General Conference, I often feel saturated with goodness, but also so aware of all the areas in which I lack. In order to move forward with all the commandments, it has helped me to break things down to small pieces in order to keep walking, even if it’s just inch-by-inch.  

Here are my 3 favorite tips in breaking things down to manageable sizes: 

First, just keep walking.  Keep on working—whatever that work may be, keep on living.  Try to be an example for your children, your friends, other people’s children, your neighbors, even strangers.  Never giving up means that you don’t stop.  Even if your pace seems hardly measurable, you inch, ever so slowly forward and stay on the path. 

 Howard W. Hunter said, “True greatness … always requires regular, consistent, small, and sometimes ordinary and mundane steps over a long period of time.”

When you take steps in prayer, or service, or with a smile, by faith and hope in Jesus Christ,  you are doing great things.   When you refuse to change your compass from your Heavenly Home, this life will begin to feel closer to and more like Zion, even in an ever-darkening world.
    
Next, walk further today than you did yesterday, or in a different way than you did before.   Make and keep goals, but give yourself a break when you need one.  There have been days when body has been so weak and helpless that I could not get out of bed.  Over time, it’s gotten better, but there are still days when treatment knocks me out.  As I never know what fun challenges will pop up on a given day,  I have developed a pep talk: 

 “It’s okay to do one thing a day.”  

If one daily goal is all I’m able to accomplish, I’ve still done something.  And, if I have time for more things, I keep making small and steady steps.  It’s amazing how all these days of just one routine goal add up over time!

Virginia H. Pearce explained it this way in 1997, when she said, 
“Do you see yourself as heroic…because you get out of bed every morning, comb your hair, and get [where you need to be] on time? Do you see the significance of doing your homework every day and recognize the courage displayed in asking for help when you don’t understand an assignment? Do you see the heroism in going to church every single Sunday, participating in class, and being friendly to others? Do you see the greatness in doing the dishes over and over and over? Or practicing the piano? Or tending children? Do you recognize the fortitude and belief in the journey’s end that are required in order to keep saying your prayers every day and keep reading the scriptures? Do you see the magnificence in giving time a chance to whittle your problems down to a manageable size?”  


All these small goals are how we learn and grow our testimonies and slowly, VERY SLOWLY, over time, move forward on the path.  We shouldn’t be too hard on ourselves because of the pace of our steps.  

Our Savior sees us as great when we improve, no matter the pace.  Try to do better today than you did yesterday, and if you don’t, forgive yourself and do better the next day.


Finally, learn to look on the bright side every day, I’ve heard it sung that even one spoonful of sugar will help the medicine go down.  We are on earth to gain a body and be tested, but also that we might have joy.  These bodies and tests are often the things that try to steal joy, which seems to go against the plan.  I believe this is life’s biggest challenge: to learn to find sunshine in the storms of life, to keep walking in the rain, to let our light shine, even when we might not feel that shiny.  

A few days ago, my son, Ryan’s, coach told me, “I have been doing this for a long time, and he is a kid that is filled with the most joy I have ever seen.  He likes to play and have fun, but never to interfere with instructions.  Even though he has worked so hard on high bar and parallel bars and rings that he has rubbed his hands raw, he still has a smile on his face.” 

 What an example to me of finding joy in the journey, even in the midst of hard work or pain.  

In the darkest, most painful hours of my cancer battle, I found a little light by learning to be better at giving thanks for my blessings.  Through prayer, or writing my experiences, by reading scriptures to find answers, through our family tradition of sharing our best of the day over dinner, by watching movies that make me laugh, or going into nature, or taking long bubble baths, or reading good books, or visiting with family or friends, or being able to cook dinner for my family, and yes:  even regaining the ability to do my previously least favorite of all chores: the dishes…..I began to see countless blessings, which became countless ways to find joy along that rocky path.  We all have REALLY bad days, some more than others.  However, in learning to become more joyful, we move closer to Zion, the pure in heart.



There they are.  My three tips:
1st: Just Keep walking.  All those steps will add up to plenty of oil to light your way.  
2nd: Reach for the milestones, even one moment at a time.
3rd: Remember to find joy along the path.  


Our Heavenly Father and His son, do not expect us to do all the things, all the time, every minute of every day.  They expect us to try.  They expect us to grow.  They expect us to learn.  They expect us to let their light shine through us.  They expect us to forgive and ask for forgiveness when we fall, and to accept their hands when they are reached to help us back up, and to have faith that it’s all in the plan that we will stumble and fall, but that we can get up to walk and walk and walk and walk AND walk some more.     



Thursday, July 25, 2019

Herceptin #58

It has been too long.  I have thought about updating SO many times,
but somehow this ends up near the end of my to-do list.  So sorry!

As Inigo Montoya once said:
"Let me explain.......No, there is too much.  Let me sum up."

I have gotten so far behind on chronicling this cancer journey!

There has been SOOOO much going on that has made me even further behind.





My oldest turned 12.  Planned and hosted party.

Our AC went out.  In July.  In Texas.
Been battling with Home Warranty Company to cover it. Almost three weeks of sleeping in the heat.

Worked with my cardiologist to regulate my heart EF with medication, but that medication made me VERY light-headed.  Changed up meds again.

All three kids at week-long summer camp.

Dentist for the whole family.

Still moving into my new home.

A week-long family trip to Yellowstone.

Back-to-School shopping.

Plus, all the regular things: cooking, cleaning, laundry, 
groceries, swimming practice, gymnastics practice, teaching Sunday school, and speaking in church.   



I was reminded today that I shouldn't make excuses for procrastinating.  



I am here.  I am living.  Life is busy and sometimes messy, but wonderfully busy and messy.
If I get behind in writing blog posts to do those things that are required for this wonderful, messy life, I'll catch up in between all the living that I'm blessed enough to have the ability to do.  

Friday, July 19, 2019

Summer Scans


Last week, I had a plethora of scans in order to catch up on the monitoring of my cancer.  
My latest ECHO showed my ejection fraction down a bit, so much that Dr. Raza ordered a cardiac MRI, which I had never before experienced.  I also had the regularly scheduled CTs and bone scan.  

The cardiac MRI was difficult.  I never realized how hard it can be to breathe and hold that breath for a determined amount of time, over and over and over again.  To breathe on command and on cue when you may be out of breath, holding still for over an hour....my rib cage was sore when that was done.  

Later that week, I went in for the CTs and bone scan.  They wouldn't use my port, so I endured the whole IV mess.  It boggles the mind how much of a physical reaction I get with IVs.  I could squeegee off the sweat from my palms.  I hate, hate, DOUBLE HATE....LOATHE ENTIRELY when the nurses don't listen to me.  I tell them that my veins will feel good, but they roll or blow.  They think they know more than I do.  Luckily, this nurse took her time and took my experience into consideration.  The process was a little more bearable this time.  

Then, there was the "delicious" vanilla shake for breakfast.  I had to drink more this time, and my body paid the price.  Diarrhea and nausea hung around all week.  And, I was pretty tired.  (I also had dentist appointments for me and all the boys + Kyle's birthday and party.  It was a FULL week!)

For all that effort, I did get good results:
Bone Scan:  no significant interval changes compared with last bone scan
no new focus of abnormal increased radio tracer uptake to suggest development of new osseous metastasis. (no new bone mets!)
I do have degenerative joint disease on shoulders, sternoclavicular joints, bilateral knees--left worse, SI joints.
kidneys, bladder, and soft tissue has a normal appearance!
Pretty good news!


CT: trachea, lungs are clear 
no evidence of developing metastases
bones have mottling and other spots correlating with previously performed scans

Good news again!

Basically, I'm old and my body is degenerating, but no new cancer.  We'll take what we can get!!!! 


I came across something which caused me to think a lot about the way I've coped with trials and used faith and hope to continue to work through challenges of life.  When times are difficult, more than once I've been encouraged with something along the lines of "God doesn't give you more than what you can handle."  On the surface, that word of comfort can give hope through storms.  However, it's not true.  

God DOES give us more than we can handle.  He does this to help us remain humble and realize that we need His help.  Line by line, precept by precept, we are all moving along.  There is no way for us to grow and become stronger without stretching our muscles.  If we always struggled with hardships that we could handle, we wouldn't gain knowledge and experience beyond our current abilities.  We can overcome anything with His strength added to our own.  I often get those feelings of feeling helpless and overwhelmed with all that life has for me these days.  It's a challenge to not get discouraged, to keep fighting with insurance for drugs, to find care for my kids during all these scans and treatments, to sometimes just get out of bed, but I try.  And, I've realized that it's not just me trying.  It's God helping me always and me trying to allow Him in, to humble myself enough to receive that help.  I know for sure that my human mind and body would not be able to handle this alone.  I am sure I'm only able to handle this and have only made it to this point through the love, charity, blessings, and miracles that God has provided along the way.  


Sunday, June 16, 2019

MRI of Brain

Before school got out for summer, I had an appointment for a follow-up MRI.  
The morning-of, a nurse called to inform me that the MRI machine was down, and I would need to reschedule. The "first opening" wasn't until three weeks later, I was told.  When that didn't work out, I was going to have to wait until July.  Thankfully, since this scan needed to be completed before I met with Dr. Wardack again, suddenly a few dates + times opened up.  The best one for me was for today.  

It being a Saturday, I was concerned we might have an I.V. situation.  Thankfully, Janelle was in house.  Her 40+ years of experience (in ICU among other areas) gave her no concerns whatsoever about my "weird" port.  She felt for it and was completely confident and even has experience with the weird and "impossible-to-access" thing.  THANK YOU, GOD, for this woman!  




After the port was accessed, it was all smooth sailing.  
I had an awesome rad tech, Anthony,  who I thanked for helping me out with my ELSMRI *emergency life-saving MRI* on a Saturday.  He got me set up and gave me super simple instructions: 
"Just lie here, completely still for 28.5 minutes, in this inclosed noise-making machine and totally press that call button if you need anything at all.  BUT DON'T MOVE!
See you in 30!"



I fell asleep and jolted awake when Anthony came back in.  I had dreamed that the noises of the machine were really a car alarm, signaling a break in and theft.  

Nope.  Just contrast meds being administered through my port.  

Another ten minutes, and it was time to go home!  
I meet with Dr. W next week.  

Hoping for good news.  
Plus, I know no matter what, it will all be okay.  

Tuesday, June 11, 2019

Herceptin #56 + Labs + Coolio


I received a letter from BCBS in the last three weeks, explaining that they received my appeal to cover Perjeta.  Another letter came, explaining that the appeal had been handed over to XYZ oncologist with blah-blah-blah credentials, who had determined that it was medically necessary to my case and should be covered.  HOORAY!  What a quick turnaround to a positive answer on that depressing and saddening news from my last appointment!  


Today was a new day and I was completely prepared to talk about more miracles in this journey brought about by the power of faith and hope and prayer.  After having labs drawn--by accessing my port!---I had even more reason to rejoice.  Then, I met with Dr. Cole, who talked about how she hadn't heard whether the insurance would be covering Perjeta, but that didn't worry her.  If we needed to just continue without it, my cancer has been "so quiet" that not having perjeta at this time doesn't give her cause for concern.  

I tried to show her the letter of coverage that I received, but all the insurance papers were mined together in my bag.  I couldn't locate the correct information!  

I asked the financial person in her office to help.  "What responses has Dr. Cole received on my appeal process for Perjeta?"
The only one she could find was from a a claim from DECEMBER 2018, where the insurance eventually covered the drug at 100%.  But, that was it.  There were no claims from the last 6 months of treatment.  How was I to know that BCBS would be paying for all of those----or for every three weeks for the rest of my life?  There was no response or record of the letter out of my mailbox....and I was starting to wonder if I had imagined it.  

I called the insurance.  There were NO CLAIMS on record for any other dates of service that included Perjeta.  WHAT???!!!! 😡.  From the first appointment in DFW, I brought proof of my Perjeta drug assistance program.  In College Station, a claim was made for the drug.  The insurance accepted or denied.  Appeals were made until it was eventually accepted.  The insurance sent a bill for my portion of the cost, which was high until my deductible and out-of-pocket were met.   The balance information was sent to the drug assistance program, who sent a check to the clinic until my deductible was met. Bada-bing, bada-boom.  No such luck here.  

I'm on the phone with insurance, trying to explain that Perjeta is not just a "claim" for me.  It's great that they covered 100% of what was owed in December, but that doesn't ease the anxiety. "I am currently at my cancer clinic, trying to decide if I will be able to continue with my treatment plan which includes an infusion of this drug every three weeks for the foreseeable future."  This customer service person, bless her heart, couldn't give me a simple, straight answer.  She didn't know.  The financial person at the clinic couldn't give me a simple, straight answer.  I was caught in a loop between insurance and billing and NO ONE COULD TELL ME HOW TO PROCEED (and not be suffocated under hundreds of thousands in bills from the cost of what wasn't covered by BCBS!!!!!!). The other frustrating this is that this big company (UT Southwestern) doesn't work like my CS Cancer Clinic.  It's on a much bigger scale, and they only bill monthly.  There is no individual or personalized billing.  No one is in house to truly answer questions.  No one is here to go to bat for me and call the insurance to fight.  I am a one-woman army against the world.  

It got to the point where I needed to make a decision for today.  No Perjeta.  And, no more wig, as it was too tight and too itchy when I was trapped in a wormhole and starting to tear. up in frustration.  



Wig off.  Decision for today made.  Would have to try to fight this battle another day.  


I took a moment to feel sorry for myself.  
"It's not like I don't have anything else going on!  Can it not be enough to just battle cancer?  Is it not painful enough to endure the side effects of drugs and infusions and the stress of ACTUALLY fighting cancer????  What about the financial stress of the whole thing?  Plus, there's the regular ups and downs of being human + trying to navigate life while keeping my little humans fed + clean + safe + alive.  Can I not just find someone who can give me A SIMPLE, STRAIGHT ANSWER ON THIS?????

And then an answer to prayer came.  
"It will be okay.  
You may not know how now, but it will be okay.  
Dr. Cole isn't worried about going forward without Perjeta.
  If you are able to work it out, that's just a bonus. 
It will be okay."

With that, I put away the stack of papers I was trying to navigate to locate the insurance company's decision to cover my drugs.  I asked for something to eat and drink and bundled up in my blanket, trying to relax and allow my BP to return to normal.  

I don't know how, but it will all be okay.  

I can keep on with my goal to BEAT(kick) THE HELL OUTTA cancer. 


To document:
This itchy rash, which two dermatoligts + two primary care physicians + two oncologists + various nurses/CRNAs/family/friends have not been able to truly diagnose or treat has been ramping up since my last treatment.  This means lots of burning pain and itching.  It also means wearing bras as little as possible.  Maybe it's not all that bad.  






I keep telling myself it's my body's way of eliminating the bad stuff from chemo drugs.  
It's not serious enough to stop those, so I just suck it up and keep going.