Leave it to Fleener--H&P #7

Back at it again.  

Coming back from Hawaii has been hard. Just returning to life away from the beach is less than perfect, but in the week we came home, I had chemo, cub scouts pinewood derby (kill me now), child-made plumbing issues, a child who choked on a rock and required the heimlich, a women's conference speech to prepare and give, all with many LOONG days of work for Stephen, which put me as mostly a single parent.  In the last few weeks, there have been a wave of end-of-year school activities, a quick, 3-day trip out of town, a dermatologist appoint, the usual soccer practices and games, as well as an attempt to rearrange and deep clean my house.  Basically, I feel like I've barely been keeping my head above water, so it's been difficult to even think about updating this blog (or our family one, for that matter.)  

If there's one thing I've learned about fighting cancer, it's that life most certainly does not slow down to accommodate that fight.  We have to step up and meet it, realizing that there will be things that will fall aside or slip through the cracks.  It's true that no one can do everything, but somehow all the important things get done. 

I met with Dr. Fleener today.  She was excited that I'm still in remission (and somewhat annoyed that the reports said, only "stable."  Cancer patients need to hear that they are in remission. )  My ECHO is still normal, as well.  At this point, she is very happy with how I have responded to chemo and how I am still remaining "stable."  It's hard to believe I'm coming up on a year since this all came back again!  But, she is positive that I'll make it to a year this time, and that's a BIG milestone for metastatic disease.  She was describing several of her other patients that are in similar situations as I am.  There really isn't a lot of information available on the use of Herceptin and Perjeta beyond three years, and she has several patients beyond that stage.  These are meant for use with lifelong maintenance, but most of those "life-long" timetables don't last beyond a few years.  It's fun being somewhat of a lab rat, but comforting that I'm not her only rat!  You just never know what's around the corner!  

I never dreamed I'd have cancer at age 33.  

I thought my battle was behind me when I reached my first year in remission.

I certainly never expected to have to start fighting again so soon since the last battle.  

However, I'm still here.  I'm still fighting.  I still matter, and life goes on.  

Yes, there are hard days.  There are times when I fear.  There are times when I am sad and angry and questioning.   I get nervous about aches and pains that pop up and question when cancer's storm cloud will actually begin storming once more.  There are days when I cry long, heavy tears, weeping for the unknown, for my family, for how long we have before they will have to go on without me, for this burden we all carry at all.  When I do have these days, I then get even more upset at myself for allowing the fear and doubts to creep in and overtake the peace and comfort that has blessed my life many times before.  Guilt over shrinking can make the pain that much more difficult.  

Then, I come across words that must have been written just for me:  

    

EMBRACE THE LIFE YOU HAVE.  I would rather be known for doing as much good with the time I have been given than for only grieving what could have been.  If I could go back, surely I would choose to not have cancer.  However, if that meant having to deal with some other tragedy, one for which I was even less prepared, I'm not sure I would make a trade.   Who knows why we must walk these difficult paths.  Who knows if there were choices in the past that led us to these exact points in the future.  All we can know if that we can embrace each moment, trust that every day of life is truly a gift, one in which we are expected to do and become better than we were the day before.  

As Dr. Fleener counseled me:  "You never know what the next summer [or month, season, etc.] will bring.  So, play this summer.  Soak it all in.  Do as much as you feel up to doing."  That pretty much sums up how I plan to embrace my life in the coming months.  

Still kicking'!  

PET Scan

I was not looking forward to this round of scans AT ALL.  I cried.  I complained.  I did not want to go!  I was especially not looking forward to the 24-hour diet of ONLY lean protein and green veggies.  And by "only," I mean...ONLY.  No juice, no toast, no potatoes.  No rice, pasta, or tortillas.  Avoid all sugar, all fruits, all fruit juices, raisins, beats, cantaloupe, cereal, breads, carrots, corn, kidney beans, pretzels, chips, granola, oatmeal, pasta, peas, yams, sodas, etc.  Only drink water.  Even though I was not happy about my limited food choices, I did it.  Then, in the 23rd hour, I received a phone call explaining that the PET scans were broken.  They thought a power outage had fried the computer motherboard.  Regardless of the issue, I would not be having my scheduled scans.  "Go have a glass of wine.  Eat some ice cream," the tech told me.  Well, that would have been information useful to me BEFORE I'd gone through the diet to almost the full amount.  There was no telling when the repairs would be complete, so she would call back to reschedule.

Thankfully, the machines were back up and I was able to get the first appointment of Thursday morning, May 5.  And, because I'd already eaten breakfast that day, I would not have to go another 24 hours of the diet!

That morning, I got up and going early, got Evan to a friend's house, so he would s

till get to school on time, and headed to the appointment.  I was there before the chemo nurses, but was still able to convince the tech to let me ask one of the nurses to access my port, even though we were cutting it close on time.

Once I had port access, I got the dose of radioactive isotopes and waited for them to make their way through my body.

Then, I was in and out, without a problem!

That stuff makes me tired, but gets out of my system fairly quickly by drinking lots of water and eliminating it that way.

Stephen told me he ran into Dr. Fleener at lunch that day.  "I haven't seen you forever!" she told him.  When she asked how things were going, Stephen told her that I was really worried about these scans. She then assured him that she would make a point to get the results THAT DAY.  "Have Melodee call the office by 4:30, if she hasn't heard from us."  What a relief it is to have a doctor that goes above and beyond.

While I was waiting to pick up kids from school, the office called to tell me the results.

"Your results are stable."  was how it was explained.

A little unsure about that terminology, I asked, "That's good, right?"

"Yes!  It means there is no evidence of disease. "


With a sigh of relief, I hung up the phone.  I'm now able to breath a little easier for another 3-4 months!  

Paper cranes

A few months ago, I received a box from a friend and fellow breast cancer survivor.  It was filled with colorful paper cranes along with the book, "Sadako and the Thousand Paper Cranes."  I read the book that day, tearfully understanding its message of both sadness and hope, feeling deep gratitude for this gift of time and love.  When I was diagnosed again, my friend started folding these cranes for me, praying they would help me again reach remission.  

I've had these cranes as a tangible sign of the love and the power of a support system for those with cancer, as well as for those experiencing any other trial.  After reaching remission, I wanted to pass it forward, but wasn't sure how.  

After thinking for months, I finally had an idea.  

I placed the thousand paper cranes in a large jar and brought them to chemo with me.  As I placed the jar down on the front desk, I told the story and explained that I have made it to remission, and now I want to share that comfort, love, and peace with others.  I invited fellow patients to take as many cranes home with them, as a reminder of the power of positive thinking and the hope that can come through the support of others.  

One of the social workers typed up the story and the invitation while I was in treatment.  

I was so happy at how many people took cranes home with them that day, and several fellow patients came by to say how much that small gift meant and what a blessing this was to them on a day when they were needing a little something.



Maybe each time I come, I can bring a few more cranes to fill up the jar, and this small act of kindness can live on!

Leave it to Fleener--H&P #6

I'm still running on Hawaii time, so it was more difficult than ever to make my appointment with Dr. Fleener today.  It's already time to schedule another PET scan as well as an echo, so I'll be doing that as soon as my treatment is complete.  Dr. F asked how I've been and if there has been anything worrisome.  I still have the rash, which seemed to have been worse this time around, just in time for a Hawaiian cruise and swimsuit season.  I also had her look at a suspicious mole on my back, which had grown and was painful-one I hadn't noticed until Hawaii.  She doesn't think it's cancerous, but is going to send me to a dermatologist, just to make sure.  "You'll probably want to have it removed, anyway, because it's getting caught on your bra and is bleeding a little.  Derm will say, 'Fleener sent you for this?  What about this rash you have going on?'".  Speaking of the rash, it still is not life-threatening, not enough to discontinue treatments, but if my scans come back normal, then she might try reducing one of the drugs by 15% to see if that helps, then upping it back to normal and reducing the other drug by 15%.  If none of that works, I'll just go back to full doses of both drugs and continue with a higher dose of Benadryl and a full amount of grin-and-bear-it.  
Dr. Fleener then asked, "other than the rash, is there anything else concerning?"
I just told her for some reason I've been really emotional about these scans, probably a combination of worry and a little nervousness about the unknowns of my time in this death sentence we call life.  In addition to the anxiety over the results, I've also been pondering this trip to Hawaii and how it is somewhere I've wanted to visit foor over thirty years.  I was finally getting to cross off a major bucket-list item, but who knows how many more?   I've also been nostalgic about my family and how quickly the boys are growing and how fast things can change.  Those little moments in life, as well as big milestones, are ones I want to cherish, even more now than before I had cancer, and especially more now that I've been diagnosed with Stage 4 cancer.  And, I don't know how many  more of them I'll get to see.  

Yes, also perhaps my faith has wavered a little.  The realist in me keeps wanting to return, to remind myself that it's crazy to believe that I'll make it to 60, 50, or even 40, or that I could perhaps someday hold a grandchild in my arms, or even watch all of my children graduate college....or middle school...or Kindergarten.  The realist in me wants me to prepare myself for the chance that I might not, and to be prepared for the scans to come back positive.  My emotions have been on edge, and just talking about it or thinking about it brings on tears.   So, maybe it's the looming scans.  Or, as Dr. Fleener reminded me, "It could be that you've been on your period for A MONTH!!!!!!"  Oh, yeah.  I guess that could have something to do with it.  

When the fear looms its ugly head, I have to go back to remembering that I have this moment.  And the next one.  And those.  I remind myself to deal with life in the day-to-day, planning for the future, but reaching it one minute at a time.  You can only eat an elephant one bite at a time.  

One thing I am grateful for is the effects of this last chemo are wearing off.  My hair is growing, my strength is returning, and I am starting to feel normal.  The last visible sign of chemo, the thinning and changing of my fingernails, has almost grown out, as well.  At some points in the regrowth process my nails would become infected and painful.  The nails were so thin that they couldn't grow out without getting caught and torn.   Somedays, nearly every finger was covered with a band-aid, in order to allow some to heal and also to shield those that were still painful from coming in contact with almost anything unprotected.  

Here's what a few of them looked like in the process: 

         

And, all the bandages!

I look to those pictures, just a few weeks ago, and see how much has changed and how much more my nails have grown, so much so that you can hardly tell there was every anything wrong.

And, just when I start to worry about my scans and the possibility of cancer returning, I'm blessed by being able to meet another breast cancer survivor.  Not any survivor:  a Stage 4 breast cancer survivor, going on 13 years in remission.

Maybe I will get to pick out lei for the boys to wear at their graduations, after all!

Still kicking cancer, one day at a time!

Another one done!  Aloha!

Leave it to Fleener--H&P #5

Can it really be that another three weeks has already flown by?  I don't know about anyone else, but my March has been crazy.  Between daylight savings time, spring break, Easter break, and Easter being one right after the other, I'm ready for a new month!  

I keep getting questions about how I'm doing.  It's hard to say.  I feel well, almost like nothing has ever been wrong.  My hair is growing back, and I get compliments each day about how well it's coming back.  

"It's growing back so well!"

"Your hair looks so good!"

"How is it growing so quickly?"

"It's not curly! My so-and-so's hair grew in SO curly after chemo!"

I don't really know what else to say, but that we are doing well.  I am tired, I still have pain, and I have a few minor reactions to my cancer-fighting drugs, but as long as they are still fighting-cancer, we plow forward.  Day by day, week by week, I get a little stronger and my hair gets a little longer.  (here's proof!)  

I recently read an article that perfectly described my new normal now.  It explained how having cancer puts a dark cloud over your head that never goes away.  That got me thinking: sure, it's not always stormy or pouring rain, but the cancer cloud is always there.  Something a person without q cancer cloud might find "normal" could be a red flag for someone standing under the cloud of cancer.  No sore muscle, sore throat, or other pain can be simply brushed aside anymore.  Being strong or tough or pushing through is not an option now.  I can't ever just forget about something anymore because that something that might easily be forgotten in someone else's mind could potentially be cancer rearing its ugly head again for me.  

However, just because this dark cloud is overhead, that doesn't mean the sun isn't shining.  The cloud is there, but not so close that that it clouds my view.   There are patches of blue skies and even rainbows now and then.   It's not raining now, even if the forecast tells of possible storms ahead. I'm carrying an umbrella, but have not needed to pull it out for weeks.  Perhaps those weeks will turn into months and years, but I'm prepared if they don't. That's my new normal now: living with the dark cloud of cancer hovering over my head, but trying to see beyond to sunny skies over the horizon and being thankful that it is simply overcast, not pouring rain.

Again, I am reminded of the "mists of darkness" described in the story of the Tree of Life (see 1 Ne 8 & 12).

And the mists of darkness are the temptations of the devil, which blindeth the eyes, and hardeneth the hearts of the children of men, and leadeth them away into broad roads, that they perish and are lost. (1 Ne 12: 17)

Cancer is not the only condition that bring along a permanent dark cloud. 

There are other terminal diseases that hang dark clouds overhead.    

Clouds of addiction linger long after the behavior has ceased.

Anxiety and depression can form together stormy skies.  

Broken hearts, betrayal, and great loss leave storms in their path.  

Each of us must overcome some dark clouds of life.  Some dispel quickly; others linger over a lifetime.  

Dark clouds in life do not always forecast a life full of darkness.    There is hope; there is help:  

...I also beheld a strait and narrow path, which came along by the rod of iron, even to the tree by which I stood...And I saw numberless concourses of people, many of whom were pressing forward, that they might obtain the path which led unto the tree by which I stood....and they came forth and caught hold of the end of the rod of iron; and they did press forward through the mist of darkness, clinging to the rod of iron...(see 1 Nephi 8:20-24, emphasis added).

As I was reading this last night with my children, it occurred to me that I had never before paid attention to what seems to be "normal" life for the majority of us.  We are pressing forward, trying JUST TO GET ON THE RIGHT PATH!! Enduring life's ups and downs and learning step-by-step are ways to be pressing forward, enduring, that we "might obtain the path," the correct path.  It seems once a person has found what's right, has made it to the truth, or "caught hold of the end of the rod," then BAM!, there arises "a mist of darkness."  

Most of life is filled with simply pressing forward, trying to blaze a trail through the dark clouds, hoping that the path is still the right path, praying that there is light beyond the fog.  All the while, those who have made it through are cheering us forward, hoping we will learn from their mistakes, that our time in the darkness might be easier than theirs.  We are promised that God loves us and His light is shining beyond the clouds, and we can feel the warmth of his love if we just hold on and press on.  But how do you know this is true if you can never see beyond the storms of life? Just how DO you develop that kind of faith????  How DOES one learn not to question God's love every time another door slams shut or another painful or frightening event comes your way?  

That is the great question of life; the one science is eager to prove, the one faith argues that the answer has already been given, and we must simply believe and keep moving forward.  Life presses on, the sun rises each day, even if all we can see is clouds.  How much better the view if we have the faith to see the light in spite of the storms.             

Any number of mists of darkness are constantly before us in mortality, and it might be difficult to overcome or to hope for the sun to ever shine again.  

However, the promise of the Easter season tells that even when it seems as if the sun refuses to shine, the SON will always be the light and the life that can overcome any clouds of darkness.  When storms hang low over the length of mortality, the hope of new day, a new life rises just over the horizon because of Him.  When our faith, our hope, and the reason for our love is placed in Christ, no dark cloud will ever dark enough to block all the light from life.  

Leave it to Fleener--H&P #4

Hawking Hope

When Stephen Hawking was diagnosed with Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig's disease) in 1963, he was only given about two years to live.  Today, At 74 years old, Dr. Hawking is not only living, but continues his work of attempting to understand and explain the universe.  How has this brilliant man continued to thrive, even after a bleak diagnosis at a young age and the deterioration of his physical abilities over time?  How has he not given up on life?
In his own words, he explains a small piece of his motivation:

"Before my condition was diagnosed, I had been very bored with life," he said. "There had not seemed to be anything worth doing."  

Fueled by the possibility of an early death, Stephen poured himself into research and into reaching his goals.  His diagnosis, it seems, actually led to him rising to higher grounds and becoming the acclaimed scientist he is today.  He quickly discovered his purpose and had hope that he would be able to accomplish his goals.

In addition to research, discovery, and professional goals, there were two major events that helped keep Stephen from the despair that could have easily taken over.  While spending time in the hospital before his original diagnosis, he shared a room with a leukemia patient.  Witnessing the hardships faced by this roommate caused Stephen to reflect on his own situation and to view it as more tolerable.  Additionally, at the time of diagnosis, Stephen was falling in love.  The resulting marriage and family gave Stephen him a purpose beyond himself, personal reasons to press forward.

I thought of Stephen's story as I was reading this week when I came across a definition of faith:

 Now faith is the substance of things hoped for, the evidence of things not seen. (Hebrews 11:1)

With intelligence, Hawkings has sought to explain and understand the universe, but his hope is not based on faith in Christ.  Although he--at one point-- supported the theory that the universe has a Creator, he now seeks to use science to disprove his own work.  Hawking has faith and hope for things not seen, but does no center that faith on the true source of light and truth.

If only all the world could grasp the power of hope once you hold fast to faith in Christ!  Belief in the Savior of the world is one that can anchor souls and make it possible to stay "sure and steadfast, always abounding in good works, being led to glorify God." (see Ether 12:4).  Hawking's life is so close to this pattern!  The simple fact that he has endured the challenges he has been given is nothing short of miraculous.  Beyond simply existing, he amazingly continues to share his talents with others, seemingly with faith that someday he will be able to unlock mysteries of the universe.  In his search to explain the great unknown, however, he seeks to prove that God was not involved.  Even though he seems to be missing this most important piece, there must be a reason why Hawking has beaten the odds and defied the boundaries of his illness.  His life truly has been filled with miracles.

As I learned more of Dr. Hawking's story in the last few weeks, I could not help but see parallels in my own story.  I have also been given a death sentence of only a few years.  However, I continue to fight and to hope for a miracle.  Some days this hope seems lost, as the realist in me keeps waiting for cancer to return.  When this dread of falling out of remission consumes me, I have to remind myself that God is a God of miracles, and miracles have not ceased. (see Mormon 9: 11-19, Moroni 7:29).  Both large and small miracles can happen every day, and I will be more likely to recognize and reach for them through HOPE.  And what shall I hope for?

...Ye shall have hope through the atonement of Christ and the power of his resurrection, to be raised unto life eternal, and this because of your faith in him according to the promise.  Wherefore, if a man have faith he must needs have hope; for without faith there cannot be any hope. (Mor 7:41-42).

Both hope and faith have been essential in my battle with cancer.  Hope provides energy to press on.  Hope brings peace to the soul.  I have been able to make the most of each day I have been given through hope.  This quality, along with faith in prayer, in God's plan for me, and in the belief that He can use me to show that miracles have not ceased have given me purpose.  I have already received the amazing miraculous gift of grace, and everyday I stay in remission is a bonus and a sign of His goodness and mercy.

What comes next after being blessed with miracles after the trials of my faith?  There is one quality that seems to come hand in hand with hope and faith in the scriptures: charity.  (see 1 Cor. 13:13, Moroni 10:20-21,  D&C 4:5, 6:19, 18:19).  Charity, the pure love of Christ, is the next step to becoming who God wants us to be.  I have been given a little more time on this earth, but all the time in the world would be of little value if I did not spend it in loving and serving others.  If I "have not charity, [I am] nothing."  (see Moroni 7:44).

And charity suffereth long, and is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things. (Moroni 7: 45)

Though hope, faith, and charity, I can continue to seek for miracles, and in the meantime, endure all things that come my way.  Hawking's life story serves as an example of hope and a determination to never give up, despite challenges.  I can take that inspiration further by putting faith and trust in God, who continues to be a God of miracles and can bless me to use my talents to bring His light into the lives of others.

Leave it to Fleener--Herceptin & Perjeta #3

Lice.

I have never had to deal with lice on myself or with my children, and I'd like to keep it that way!  There have been informative letters about lice treatment and prevention sent home from school and texts about children in class with lice.  Everyday, I use a lice repellent spray on the kids' hair to give extra protection.  Just the thought of lice makes my head itch!

Seriously, though.

My head has been itching for weeks, and I've had Stephen check my scalp for critters more than once.  The lice talk only makes it worse!  And, then it hit me:  My head itches because my hair is growing back!  It was finally long enough to dye blond, but in the last few weeks, it has really been starting to grow.  Hundreds of dark roots are sprouting up and with them comes the annoyance of an itchy scalp.

I saw Dr. Fleener today.  She followed-up on my concerns from the last appointment--the rash/bumps from my drug reaction and my pain level.

She did not recommend sending me to a dermatologist for the rash because it would go something like this.  First, that doctor would want to take a biopsy to rule out infection.  The test would come back showing a drug reaction.  As annoying as this rash is, it's not enough to discontinue my chemo, and we would be right back where we started.  Since my youngest son already had a follow-up appointment with his dermatologist, I slipped in a question about my concern.  She looked at my skin and concurred that it was most likely a reaction to the drugs.  The next part was one of those tender mercies.  "I did my residency at MD Anderson," she explained.  (MD Anderson is a MAJOR mecca for cancer treatment in Houston, for those of you unfamiliar.)  She continued, "As difficult and uncomfortable as that is, we often saw reactions like yours as a positive sign.  It usually means things are working because your immune system is triggered."  I was reassured then to keep pressing forward, despite the uncomfortable and annoying reaction. 

As far as pain, she was pleased that I was seeing Dr. O, to keep pain under control.  The pain is bearable, but the mental anguish is debilitating.  I guess I thought that once the tumors were gone, the pain would go with them.  However, I still experience pain in my back, hips, shoulder, and legs, causing me to worry that cancer is looming.  I no longer know what is a "normal" level of pain and what is something to report to a medical professional.  When I simply thought I had "thrown my back out," last summer, I was actually growing tumors in my bones!  Both doctors have been reassuring.  Some of these pains are "normal" for a female who has given birth and joints never fully came back together and for someone who fell and fractured vertebrae.  Again, I was relieved and encouraged to keep pressing forward and get a little better day by day.   

Like the itchy scalp, these unpleasant and sometimes painful reactions are signs that treatment is working.  The pains that accompany growth and improvement can be difficult, but teach us humility and gratitude.  I'm grateful for an itchy scalp because my hair is growing back.  I'm grateful for the outward signs that chemo is continuing to be effective.  I am seeing how weak things can be made strong again.  (see Ether 12:27).

After my first battle with cancer, I wanted to write to Elder David A. Bednar to express my gratitude for a speech he made that became the theme of my journey: "That we Might not Shrink."  I put off these promptings and was suddenly no longer cancer-free.  When the prompting came again, this time I followed it and wrote a short thank you letter, feeling pleased and hopeful that he might one day read it.  Time went by and I became lost in the trenches of fighting cancer.

Then, on one particularly difficult day, when I was feeling weak and hopeless, I received a response:    

I was especially struck by the verse of scripture:

Nevertheless, the Lord God showeth us our weakness that we may know that it is by his grace, and his great condescensions unto the children of men, that we have power to do these things (Jacob 4:7).

This was just what I needed to hear then, and it is reinforced today.  Our weakness (not weaknesses)--- our WEAKNESS---physically, mentally, spiritually, emotionally---is part of mortality.  We are reminded over and over of how precious life is and how deeply we need grace to overcome our human weakness.  Trials, pain, sadness, despair, fear of lice.....He has felt all our weakness and asks only that we humble ourselves and allow Him to strengthen us with the "power to do these things." (see also Philippians 4:13).

Having been strengthened to make it this far, I will continue on and endure.  There is medicine that can help ease the discomforts of the journey.  Prayer, faith, and hope keeps me moving forward with the hope that, "the Lord [may] bless and strengthen [me] in the YEARS ahead."  (emphasis added.)  Only God knows exactly how many years, but I am trying to get the most out of every day.  

Kicking it to Cancer, one treatment at a time!