Post Surgery

Cancer: Chapter One is over.

In this chapter, we survived the bewilderment of diagnosis, the horrors of radiation, the first 3-month scan to check for metastasis (none!) and the final surgery.  Check. Check. Check. Complete.

After surgery on Monday, our mothers proclaimed their joy and relief. "Cancer free!!" They shared with friends and family, "Thank Heavenly Father, Matt is disease-free!!"

Yet Matt and I didn't feel relieved. Shouldn't we be celebrating with gusto? This surgery finally removed the remaining microscopic cancer cells from his rear. We talked about it in the hospital room. We still felt worried. We still awaited the final pathology report. Matt worried about what else the doctor might find there.

We realize that this is only the beginning. This is only Chapter One. There are likely more chapters in this epic saga called "Life With Sarcoma."

We've learned a lot about cancer over the last several weeks. We've read a lot of people's experiences with sarcoma on social media. We've read scientific studies. We've read about holistic approaches to healing cancer. The truth of the matter is that everyone has cancer cells in their bodies. But our immune system catches and kills them before they grow into tumors. For some complex and unclear reason, Matt's body was unable to beat these cancer cells itself. It's our responsibility now to nourish his body back to health so that it will be whole and strong and well enough to fight the disease on its own.

The best book I have read on the subject thus far is "Staying Alive" by Brenda Hunter, Ph.D. The name of the book is not only one of my favorite disco dancing songs, but also our next goal for Matt! Dr. Hunter is a breast cancer survivor who so accurately describes the diagnosis experience and the real emotions of cancer that truth jumps off each page in the simplest of sentences.

"Against my will and to my absolute horror, I was entering a new land filled with eerie shadows, images of death, and dire pronouncements delivered by doctors I did not know and had never wanted to meet. A territory where I had neither a map nor a guide. A place I had no guarantee of leaving alive. The Cancer Zone." p. 4

"As I lay on the gurney waiting to be wheeled up to surgery, I wanted to jump up, rip off the surgical gown, and run. Run as fast as I could. Anywhere. Away from the hospital and my life. Away from me-from the body that had, after years of excellent health, betrayed me." p. 6

"Conventional medicine's 'cut, poison, and burn' approach to cancer just didn't make sense to me. Why take a sick body with a depressed immune system and subject it to a treatment protocol that might damage vital organs and cause secondary cancers? Frankly, the 'cure' sounded barbaric. While I knew that doing nothing was not an option, the treatment protocols I had heard so far gave me little confidence. I longed for a treatment plan that would end the abnormal proliferation of cancer cells, strengthen my immune system, and give me a fighting chance for survival. Did such a plan even exist?" p. 8

"My goal was not to deny the severity of my illness but to combat it on all fronts: the physical (which was all the doctors had discussed so far), the psychological, and the spiritual." p. 9

"I longed for a perspective that would not only give me hope that I could recover my health but would address the causes of the physiological breakdown in the first place." p. 17

"I realized that cancer is more than a wake-up call; it is the body's last plaintive cry for help. The tumor is saying, 'Change or die.'" p. 19

This last quote really struck me. Substantive changes were in order or else Matt would die from this epithelioid sarcoma. As I read this book, I shouted inside, "Yes! Yes! Yes!"

Dr. Hunter has done all of the research I've been looking for with regards to a natural approach to healing cancer. She discusses the significance of a vegan diet. Meat and dairy and junk food are toxic! She talks about flooding the body several times daily with nourishing and easily absorbable vitamins from fresh vegetable juice. We bought a powerful juicer! She discusses the importance of detoxification, stress reduction, taking care of yourself when you're used to taking care of everyone else, daily exercise, time spent outdoors, and more. The stories of cancer patients are inspirational but most important, this book gives me something that the oncologists certainly don't offer: HOPE.

I feel this is the path for Matt so strongly that I've been reading it aloud to him every opportunity I find to get him on board and to see if he desires to make these changes himself. We're about halfway through it and his impression thus far is, "Overall it sounds good."

Yesterday Matt came out of the bedroom from a late afternoon nap with the surprising news that he had heard from Kim, Dr. Rosenthal's nurse practitioner. She had the final pathology report results already from the tissue they removed on Monday. There were clear margins and basically, everything was clear. No cancer.

It didn't really settle with me at that point, maybe because I had to make dinner and Maggie was crying and there was so much kid noise. But that evening I felt melancholy. I must be tired still, I thought to myself. As we climbed into bed together I asked him, "Are you relieved?" And he said, finally, "Yes." "I am too. And I kinda just want to cry."

Chapter One is finally over.

My Two Cents

I started writing a long blog post about this whole cancer thing, and I think it will have to wait till later. However, I do want to share my current thoughts. (Which just don't want to come out right.)

Where is the proper place for fear and worry in the reality I am only beginning to grasp as a lifelong fight for my life on this earth? I have unshakable faith that I, Rhyetta and the kids' as well, am in God's hands. That if it were His will, this cancer would instantly leave my body and not plague us anymore. I know that I need to "fear not; but be believing."

However, the reality of the situation is this: I have an extremely rare cancer that has very little research on how to cure it, let alone on how to treat it. I don't even know if the 5 weeks of radiation that burned the inside and outside of my rear end worked or no, or if it will ever work. I don't know if surgery will get all of it out of my bum where it began. I worry the doctors aren't telling me everything, especially when I read their report and more information is in that then what was discussed. I fear, yes I fear and worry, that when I go in for my scans on the 21st it will show the cancer is still there and has spread. I fear that when I go in for surgery on the 25th that it will be more invasive than previously thought. I read blogs of people fighting the same disease and I don't like what I read because for them it has spread, radiation and chemo do nothing but stall the spread, and not even changing their diet helps. The reality of my situation is that if I don't put up a fight, my life may end sooner than I want; yet even if I do it still might end up that way. I fear that if I don't put on a "good face" then I am not strong.

When faced with this reality, fear and worry are a natural response. Do I give in to it? Absolutely not! Does it consume my conscious thoughts? Not always, especially when I am busy. Does it define who I am? Not in the least bit! Do I wish we didn't have to deal with this at all? Of course.

In the face of my fear and worry, my faith in a loving Heavenly Father and Savior, Jesus Christ sustain me. My sweet eternal companion, best friend, nutritionist, researcher, shoulder to cry on, and fellow warrior sustain me. My six children sustain me. The many family, friends, coworkers, and strangers that pray for me and my family sustain me. The unseen hands that guide me and my family sustain me. I couldn't do it by myself, that's for sure. I have a lot to fight for, and every day that I am blessed to be alive that's what I am going to do. There will be good days, and yes, there will be bad days, but in the end (no pun intended) we will win.

Any who, I'm not as eloquent in my writing as Rhyetta, so I may just leave it to her to share.  That's all for now.

So much to process...

This is a journal entry I wrote after a particularly vivid dream last week...

"Last night I dreamt I had a new baby, a boy.  He was so chubby and perfect and soft.  I felt so excited about this new challenge: having Maggie (still a baby at almost 1 year old) and a new baby boy.  I spent time getting the laundry ready.  Anaise was there.  My aunts too.  I had to help at the school of one of my kids on the day of his birth which made me so mad.  I had an emotional breakdown in the classroom trying to make the teacher feel guilty that I was there when I needed to be with my baby.  But then when I got back to be with the new baby, he was gone.  And Maggie too.  I was worried.  I hoped one of my aunts had taken them.  I busied myself with the laundry while I waited for them.  I looked for them in random places like the washing machine and dryer.

When I woke up (the kids and Matt let me sleep in this morning), I felt a sense of sadness that there is no baby boy.  And there probably won't ever be.

Where was Matt in my dream??"

We both have a sense of impending doom.  We can't even vocalize it.  It would be too sad, to hard to bear, a reality so awful we don't want it to possibly come true.  It would be my worst fear.  It would be a cruel joke played by God in my opinion.  My hardest trial actually played against me to test me.

Several years ago, shortly after moving into this house, I was overcome with a foreboding of Matt's early death.  It felt so strong and so real, like a premonition, that I was anxious, crying, scared, etc. for days and weeks.  It prompted us to action.  We got a life insurance policy on him--that's how serious I felt it was.  I got a powerful priesthood blessing from a church member, Brother Tuia.  It was like a voice from heaven comforting me, reassuring me, calming me.  And all that anxiety went away.

That was five years ago.  And Matt has now been diagnosed with sarcoma.  My worst fear has moved from unfounded to likely.

He has had two blessings that have reassured him (us) that he will get through this test and raise his family.  "This is a test.  This is only a test."  Wouldn't it just be the saddest thing for the world not to know Matt as a Grandpa?!  He is the greatest Dad and I look forward to being grandparents together.

We both feel it.  We both worry that it will spread.  That it will grown in other parts of his body and then he will die.  How can I even write these words???  Because we feel scared.  We are grown ups and we feel fear like little children.

But we also have hope.  We have peace in the knowledge that we were sealed eternally in the temple on our wedding day which means we are a forever family.  Even if he is taken from me early, we will be husband and wife in heaven.  There is so much life to live right now: 6 active, giggly, angry, learning, changing kids to raise in this house.  Lots to do: work, cook, clean, play, serve, laundry, sleep, rest.  So much to keep us busy.  So much to be thankful for.

Over the past couple of weeks since I last posted Matt has spent his time learning how to manage pain as he tries to heal from the severe radiation burn.  We were both surprised at how bad the burn got.  It continued getting worse for several days even after radiation was over.  It was so raw and in such a tender area of the body that walking and even standing and sitting caused severe pain.  He spent Christmas break lying down basically!  He has taken off this week of work as well because lying down at work isn't a real option in his profession!

He tried using a Fentanyl patch in addition to the naproxen and the oxycodone but even two very strong pain medicines wasn't managing the pain.  I advised him that maybe this kind of burn doesn't respond to pain meds, maybe the oxycodone wasn't even helping (because it didn't seem to be).  This was seriously bad advice on my part.  What a mistake.  A day after stopping the oxycodone and using one Fentanyl patch only, Matt was in so much pain it was unbearable.  I called the doctor's office who advised us to try more patches and continue with the oxycodone as needed.  We did this and he still felt the pain.  What finally worked was using three patches along with the oxycodone every 4 hours.  We both could tell the difference when the third patch was applied.  Well, he looked pale and he felt hungover, but FINALLY the pain was gone.  And he could smile.

Over the past few days I have been amazed at the healing taking place.  It is getting better!  Very slowly but surely, his skin has gone from gruesome, raw and bleeding to new, pink and healed.  I wouldn't have believed how quickly it could happen once it started the healing process.  He can now sit for periods of time.  It is exciting to know that the skin should be healed enough for him to go ahead with the surgery that is scheduled for January 25th.  We have been waiting for this surgery since his diagnosis.

We've had the opportunity to do more research online.  It's very discouraging to finally find blogs of people who have also been diagnosed with this rare form of cancer only to discover that shortly after the blog begins, the blog ends.  It might last a year or two (in one case, it was seven!).  It is fascinating to read about a person's experience with diagnosis and treatment, to learn what their doctors told them, to understand their feelings and to compare their treatment plans to ours.  But as we read on, we read of metastases. We read how chemotherapy and radiation are unable to kill the disease.  Then we read an obituary.  

A friend of ours with cancer has newly detected spots on her liver.  Another friend has questionable nodules on her spine.  At the same time, there are several members of a sarcoma Facebook group we belong to who have survived the disease for years and decades.  Why do some cancer warriors experience metastases and others don't?!?!  Can alternative therapies make a difference?  This is the quest I am currently on.  I am studying nutrition, supplementation, and anything else that sounds legitimate that can make a difference.  We're not going to try everything.  That is too costly and some of the options sound silly or don't make sense.  But we are willing to learn and pray about other therapies to determine what feels right for Matt.

There is so much to process.  There is the reality of the pain and the healing and the treatment.  There is learning how to ride out the roller coaster of worry and hope and fear and faith.  There is balancing the reality of the diagnosis with the belief that God can heal.  There are changes because of the treatment.  There are no more children in our immediate future.  There may be other temporary or permanent side effects from the radiation for Matt to deal with.  His upcoming surgery may be invasive.  The radiation oncologist talked with us about her concerns in this regard.  A colostomy is a serious possibility.  I know we will get through all of it okay.  We are in this together and we can do anything.  But it is a lot to process!!!

Learning to Receive

Matt is in almost constant pain.  The burn is more purple than dark red.  It is developing sores.  There are three more days of radiation.  He has a date to meet with his surgeon (the sarcoma specialist) on January 21^st.  If the skin is not too broken down, then his surgery will take place early Monday morning on January 25^th.  This is good news.  We want this surgery to be successful at finally removing all of the cancer from his body!

On the 21^st of January he will also have an MRI of the area as well as his first 3 month post-diagnosis CT scan.  He will have these scans every 3 months for the first year or two to vigilantly monitor any cancer spread.  The most likely place for the cancer to spread are the lungs, hence it is a CT scan of the chest.  It is incredible to realize that he is already scheduled for his 3-month scans!

Thank goodness for health insurance!  Insurance for Matt is actually the only insurance we can afford.  His employer covers almost all of the cost of his premiums.  He pays a coinsurance charge for doctor visits, specialist visits, surgery and tests, all of which have been paid for from our savings account. 

Thank goodness for savings accounts!  Over the years, we have learned the value of keeping money in the bank for emergencies.  We save money, then we end up using the money for something we need.  We save again, then we buy a Suburban for our growing family.  We save again, then use it when money is tight and we need to buy food and gas with it. At this time, in 2015 and 2016, we are using our savings for health care.  Knowing that money is sitting there in the bank has provided a sense of peace through this unfamiliar journey that is cancer care.

As the savings has been used, I have kept my eye on the balance, knowing we’ll still need this much for doctor visits and this much for tests and a second surgery.  But recently, unexpectedly, and only two months after installing brand new flooring into the basement apartment of our rental home in Utah, there was a sewage flood which filled areas of the basement with foul water and required us to pull out that new flooring plus tear down affected walls, carpet, and do major cleanup and repairs.  All the savings and then some will be used to pay the insurance deductible, plumber costs, manager costs, and carpet depreciation. 

I have been the one dealing with this emergency because Matt has been so busy with work and treatment.  I have also been the one keeping an eye on finances, aware now that unless money comes in miraculously, we will be using a credit card to pay for the healthcare costs in our future.  We haven’t owed debt (other than mortgages) for years so this feels really uncomfortable.  I had to tell myself repeatedly, “It’s just money.  Money comes and money goes.  That’s what it’s there for.  It’s just money.”  This mantra helped me to not worry about it, but to trust in a higher power to keep us out of debt.  In fact, that’s what I prayed for.  “Please, Heavenly Father, help us to find the money we need to avoid going in to debt.  Please help the money come in that we need to cover the money going out.”  Matt didn’t even know I was praying for this.  He has been so busy with work and we are both so busy raising these six kids that the money issues weren’t even brought up.

While all of this was going on at home, Matt has been experiencing tremendous blessings at work.  One day he was singled out to receive a surprise gift card from a group at his school, recognizing his efforts as a teacher and wanting to support him through his current health challenge.  It was a generous gift and it made him feel like he was a charity case.  He felt there was no need for it.  In his mind, just because he has cancer, it doesn’t mean he deserves any special gift over someone else.  He griped about it to his coworker, this same coworker who had been trying to figure out a way to implement a much bigger and much more generous gift experience that Matt’s entire school had gotten behind.  She heard his complaints and recognized that Matt might not be willing to accept a larger contribution.  She called me, “Hi, Rhyetta, um… some of us from school are planning a big Christmas gift for Matt and you and the kids and we need to figure out how we are going to get Matt to be able to accept it!”  She then went on explaining what it’s for and why they are doing it and I recognized this charity as something we did in fact need. I told her that I’d work on Matt being able to receive it.

The next opportunity we had to talk alone was in the car on our way somewhere.  Matt expressed himself, “We don’t need this!  We don’t deserve this over anyone else!”  I told him how this donation was a way for people to show their support for him and for our family, how at Christmastime people can give with their pocketbooks and they want these opportunities to offer something which might benefit someone else.  Wouldn’t we be willing and eager to donate to a friend in the same situation?!  Then I added, “Our savings will be depleted because of the emergency in our rental house.  I have been praying for money to come in to replenish it.  This is an answer to my prayer.  Please accept it for me.” 

It took praying and humbling.  It took a break down of pride.  But he did.  This Christmas season he has been given so many unselfish offerings, generous gift cards, kindhearted gifts and even cold hard cash.  Here are some examples:

• In an email from a prior coworker, “I’m doing my Thanksgiving shopping this weekend and I would like to pick up your family’s Thanksgiving groceries.  Send me a list!”
• From friends at church, deliveries of wood to use in our wood-burning stove this winter.  And the gift of service from other friends who helped us chop it up into usable pieces.
• From a coworker, “If you ever need to stay at K.U. for treatment and the drive is too far, you are welcome to stay overnight in an empty apartment we own near the campus.”
• In an envelope left on the dashboard of our car, $100 cash with a note: “We love the Musser Family.”
• From a friend, “I don’t want you to worry about the cost of gas driving to and from appointments and treatments.  Tell me when you have an appointment, and I’ll get you a gas card to cover it.”
• From a collection at his previous school, monetary donations valued in the hundreds.
• From a collection at his current school, gift cards galore and cash which will return our savings account back to the pre-basement emergency level plus extra.
• From family, Christmas gifts of significant value from all sides.

We know from experience that it feels better to give than to receive.  But this Christmas season we are learning what it’s like to be on the receiving end.  It is humbling.  It is appreciated.

One evening during family prayer, Kian prayed, "Please bless Dad's cancer to be... (pause) benign... and not... (pause) indignant."

I chuckled.  "Kian, the word you were looking for was malignant."

Kian responded, "I know.  I know.  I know the word."

I chuckled again and left it at that.  I'm not certain he does know the word.  I mean, if it's cancer, it's automatically malignant, right?!

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Klaus has witnessed blessings given to Daddy regarding the cancer as well as blessings from Daddy to all of the kids at the start of each school year.  Tonight he told Dad he wanted to give him a blessing.  While Klaus doesn't hold the priesthood yet, I encouraged him: "That's very sweet, Klaus, go ahead," I said.  He put his hands on Matt's head, closed his eyes and prayed, "Matt Knight Musser, by the authority of the priesthood, I bless you that the cancer will go away (and he pushed his hands to the side like he was pushing it away)."  I told him it was good practice for when he will have the priesthood when he's older.  What a sweetheart.

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Matt is exactly halfway through the radiation treatments.  He is dealing with discomfort mainly and burning and itching, all of which are annoying but manageable.  But he's also got severe pain at certain moments of the day.  I don't think I can go into all the details here because it's kind of private. But it's really bad and there's nothing I can do about it.  Prayers requested for his strength and endurance.

Here is a picture of him sleeping soundly in the middle of the day on Saturday even with all of the kids awake and playing in the same room.  Maybe the fatigue is hitting him now too.  Can you see the beautiful blanket that my good friend, Kim Wagner, made for him to give him comfort during this difficult time?  It is the softest blanket I have ever felt in my life and it is gorgeous, absolutely stunning.  What a treasure.

A Boy and His Hero

As I was helping Klaus get ready one morning I asked him if he knew his full name.  He responded enthusiastically, "My name is Mini-Matt!"

Klaus is a lot like his Dad.  He must have remembered me calling him that some time ago.  He loves his Daddy.  He always has.  Klaus is a sensitive boy.  He loves me too.  In fact, he wants to marry me.  But there is a really special bond between Klaus and his Dad.  The way Matt's parents described Matt as a child, it reminds me a lot of the way Klaus behaves.  He is super cuddly and snuggly.  He still climbs into bed with us at night!  It gets awful crowded sometimes!

Klaus is also a special challenge.  He does things his own way.  He is not interested in playing with toys the way the other kids are.  He requires a lot of attention and affection.  I have been exasperated by him at some point every day for the last few years!!

And over the last two months since the big C diagnosis, Klaus has become more and more difficult to deal with.  He whines constantly and acts younger than his age.  He wakes up grumpy, acts lazy, and spends a significant portion of his day unhappy about something or another.  He gets sent to his bed a lot for making grumping sounds (which I can't stand) and yelling at us instead of talking politely.

Earlier this month during a rare moment of quiet and peace in the living room (the older kids were playing in their own rooms), Klaus curled up and snuggled in his Daddy's lap.  As I nursed Maggie in the rocking chair, I was able to listen to their heartfelt conversation.  I can't remember the exact words but it was something like this:

Klaus, quietly: "I'm worried."

Daddy, "What are you worried about, Klausie?"

Klaus, even quieter, and practically in the fetal position: "I'm scared."

At this point, my full attention was on this conversation.  I was so thankful for the unusual quietness of the house and for the opportunity I had to hear Klaus finally put into words some of his feelings.

Daddy, "What are you scared about?"

Klaus, "I'm scared that you will die."

Did he really just say that?!  Matt and I looked at each other.  Could this 4-year-old who previously had never mentioned anything whatsoever about cancer or sickness or treatment or anything related to Matt's diagnosis just voice with clarity his concerns about his Daddy's life?!

Matt then reassuringly explained how his treatment would help the disease.  How the radiation would kill the cancer cells.  How the surgery would then remove the cancer from his body completely.  How his doctors are caring for him in the best way possible to keep him alive and healthy.  As I listened, I felt Matt broke it down perfectly for Klaus' understanding and reassured him tenderly.

Klaus, "They will remove the cancer from your bum cheek."

Daddy, "Yes, so that all the cancer is gone and I will stay alive and be healthy."

There was more to the conversation.  There were more sensitive and sweet words exchanged affectionately between father and son as they embraced each other in the silence of the living room.  I got to witness this reverent exchange and I can't stop thinking of it and weeping over the beauty of it. I consider it a miracle.

This 4-year-old who has been getting into trouble for acting out, bellyaching incessantly, and very difficult to live with has been worried.  And scared.  Scared that his hero might die.

With this miraculous exchange on my heart, it's been easier for me to be more understanding and patient toward this delicate boy.  When I see him, I see such a small and concerned child.  What a tender mercy.

What a Roller Coaster

This whole cancer thing has been quite a roller coaster.  And treatment hasn't even begun yet!  I've decided that cancer is stupid.  Sometimes I just want to shout it out loud, "Stupid cancer!!!"  That's my way of swearing.

A lot has happened but I'm usually too tired at night to update the blog.  Matt asked for and received approval for a PET scan.  He got the results on a CD.  He spent a few hours analyzing the results and the two of us together spent over an hour looking at all of the glowing things inside his body.  The more you glow, the more cancer there is.  Boy, looking at it ourselves was a mistake.  I worried too much waiting for the results of that scan, far too much.  I was sure he had it in his spine and various other body parts.  But the results came back and THANKFULLY there was no spread.

Then we went to the radiation oncology department at St. Joseph to consult with Dr. Goins who will be in charge of Matt's radiation.  We thought he would start treatment that day.  Ha!  Not for another two weeks.  She appears to be a competent doctor.  One thing she said which I didn't like to hear after examining Matt was, "Oh, that is a very bad location."  I think she was referring to the possible side effects he might endure, namely skin burn and diarrhea.  I am so worried about him suffering through this.  Some people don't have any trouble with radiation and some people suffer fatigue and burn and other side effects.

His radiation treatment starts tomorrow, Wednesday, Nov. 18 and goes through Dec 23.  It is low dose IMRT radiation for 25 treatments.  There are so many details I should be including but I am too tired to write them all down, sorry.

Four to eight weeks after radiation is finished, his next (and last?!?!) surgery will be scheduled.  That means it will probably be February.

Another point I really didn't like and that has been weighing on my mind was in Dr. Myron's report which we accessed at home.  He didn't say this to us directly but reported that this cancer has only a 35% long-term survival rate.  Didn't I say cancer is stupid?!!!