Telling the boys

Without a doubt, much of this experience has caused Jamie and me to reflect upon all of the many emotions we have felt.  It is really hard to express what those are like, partly because they seem so transient.  Admittedly, I think we are still quite numb to this.  At times I find myself thinking “I have cancer” and it just doesn’t seem real.  It seems so foreign to think this is part of our lives from here on out. 

After hearing the news, naturally, one of our first thoughts was what do we tell the boys. Our concerns were mainly centered on Austin.  I just couldn’t get my head around the fact that a 4 year old needed to understand, at least on some level, what cancer was.    Jamie and I thoughtfully and prayerfully considered what that conversation would be like.  In reality, he is 4, let’s not overcomplicate this.  Our main concern wasn’t just the content, but rather, how this would make him feel.  We knew to keep it simple and straightforward. Austin is smart.  He has a certain acumen for detail.  His mind works in layers much more granular than I expected a 4 year old to be able.  More notable, he seems to be able to connect those layers seamlessly in his everyday life, sort of like connecting the dots even though those dots may not exist in an array.  For the time being, cancer is a part of our lives.  As a family, we live with it every day.  It is constantly talked about, always planned around, and sadly seems to take priority over much of what “used to be.”  We were concerned about him blaming himself or feeling like he had done something wrong that caused all of the constant commotion and buzz around cancer. 

We approached Austin one evening before my surgery.  Our intent was to be simple, straightforward and easy, with it still being honest and caring.  We explained that daddy has a “bug” in him called cancer.  We explained that it wasn’t anybody’s fault; not daddy’s, not mommy’s and certainly not his or his brothers.  We explained that it isn’t something that you can catch from daddy, so we don’t have to worry about him or anybody else getting it from me.  He sat there, and listened intently.  He paused and then asked “how did you get cancer?”  That is a good question.  We don’t know, really.  But we do know we have good doctors who will make daddy better again.  We explained that the doctors would take the cancer out, and that would probably mean I would need to rest for a bit. He seemed ok with that.  He said he would help out, and daddy could rest.   He has also has learned where my cancer is at, and finds that quite humorous.  The other day he reminded me that I only have one “sack-ball.”  It took me a minute to figure out what he was talking about, but once I caught on we both laughed.    

Since that night, we have had several open dialogues with him.  He asks questions, we answer to the best of our ability.  The topic of death has come up briefly, but thankfully that isn’t on his radar and thus he hasn’t seemed to make that connection.  Frankly, neither have we.  We make it a point to check in with him on his thoughts on cancer.  We don’t do it frequently, or infrequently.  We want him to be able to ask questions and talk about his concerns, but don’t want it to be on his mind a moment more than necessary, he is four after all.

Austin, Tanner and Zachary are the best medicine for Jamie and me.  They see things in such a pure and empirical way.  When I think of chemotherapy I think of nausea, fatigue, heartburn, neuropathy, night sweats, bald head, bald body, 7 hours in a chair for 5 days in a row, scary, pale, weak, and seemingly endless.  I carry this brown bag full of pharmaceuticals, dispensable at a moments notice.  Sometimes I can’t tell if I’m pregnant, going through menopause or have cancer.  I do think of it as a cure, but sometimes get caught up in the “what ifs.”  Austin sees chemotherapy as the thing that will get cancer out.  That is it; nothing more, nothing less.  Why shouldn’t we think of it that way?   I’m not suggesting we live in denial, or deny the reality of cancer and chemotherapy, but so much of this is a mental battle.  It’s nice to not have the clutter and noise at times.  We play and are spontaneous, and we laugh and we live.  Tanner is beyond good at this, it’s quite the talent he has.  Even Zachary has figured out how to crawl to join in on the ruckus.  It’s refreshing to see this through the lens of my children.  I’m glad each of the boys teaches us this. 

One final comment:  Austin’s prayers.  We could all learn a lesson or two from a child’s prayer.  We have had many tender moments with the boys as we talk to Heavenly Father about this often; before daddy goes to work, together at the dinner table, or knelt beside their beds.

“Please bless that daddy’s cancer can be gone”

“Please bless that the chemotherapy will get rid of daddy’s cancer”

These prayers along with the countless others offered on our behalf are something we will always be thankful for and hold close to our hearts. 

Gratitude

Cancer is tough.  Actually, it's brutal.  We go through a full gamut of emotions that can shift and change at a moment’s notice.  At times we feel numb, even denial, sometimes its sadness and fear, and sometimes just plain emotional. It never leaves, it is constantly on our mind, and can completely consume our day to day activities.  It affects us physically, emotionally, financially, mentally and even spiritually.   Despite its nature, I can honestly say, most of the time we are filled with hope, faith, and optimism. We will beat this.  Interestingly enough, throughout this experience thus far, the thing Jamie and I have felt the most . . . by far . . .  is gratitude.

I think after learning I had cancer, Jamie and I immediately found a much clearer perspective of life. As temporary as it may be, looking at life through the lens of cancer makes it innately easier to prioritize everything around us.  I was, in all honesty, surprised at the overwhelming feeling of gratitude for the blessings I have in my life.  I didn't expect these feelings to be so dominate and at the forefront of my thoughts and reflections.  I feel that The Lord has blessed our family beyond merit.  We have a wonderful life, even with cancer.  I have the most beautiful loving wife, and I have 3 healthy, vibrant little boys.  I have wonderful parents who love me and support me and would do anything in their power for me.  Jamie's parents have been a constant source of love, compassion and endless service since we started this journey.  My sister and Jamie's two sisters along with her brother, together with their spouses have shown an immense amount of love and support for us.  We have friends and neighbors who have come in groves to offer help and support. They have visited us at our house, often with tears in their eyes offering endless service and charity.  We are so fortunate to have so many caring and loving individuals around us.  I think that even the smallest amount of faith enables us to find gratitude in both the good and bad times.

There have been numerous instances when I have been rendered speechless at people’s generosity and love. There is a part of me that is truly embarrassed at my lack of ability to express how thankful I was.  In the moment, I just couldn't find the words to articulate how I felt, which always resulted in a response not worthy of the gesture.  I feel a need to apologize for this, as I am beyond grateful for all of it.  My hope, is that relatively soon I will have the opportunity, courage, and words to express how much these things mean to me.

This world is full of good people.  We have received these acts of kindness and love in countless ways, from countless people.  They present themselves in the form of prayers, fasting and spiritual blessings.  We have had flowers and plants delivered to our house. We have had chocolate covered strawberries, books, movies, fruit baskets, and balloons delivered.  We have had dinners brought over for days on end.  We have had people drop off pre made frozen dinners for the tough days ahead.  Our lawn has been mowed by several people without any hesitation or asking.  I'm fairly certain somebody even sprayed the crop of weeds we are growing in our backyard.   My work has been above and beyond accommodating.  "Whatever you need," is the response I get when discussing this with my boss.  In addition to the gifts to keep me comfortable during chemo, my friends from my department donated their own person time off to my account.  I no longer have to worry about paid time off accruals for the weeks of treatment we face, there is more than enough.  Friends and family chipped in and sent us to a Park City resort  for a night before chemo started.   While we were enjoying the weekend with the boys, they deep cleaned our entire house, including a carpet cleaning company donating their services.  We have endless offers for babysitters.  Neighbors have set up play groups to take the boys to, one friend even offered to take them on vacation if we wanted.  We have offers for rides to chemo and doctors appointments.  Friends shaving their heads to offer support, cookies, brownies, homemade bread, cards, notes, texts, phone calls, stop by visits, colleagues visiting me at chemo, care packages full of hoodies, house shoes, shirts, shorts, sweats, blankets, headphones, movies, a backpack, lotions and chap stick.  My mom and sister are flying out to help out, Jamie's parents have been their daily helping with the dinners, the boys and rides.  It goes on, and on, and on. I can't possibly list it all.  It is more than I could have ever imagined.  People are so kind, and so loving, and so giving.  We have much to be thankful for.  Cancer is not something you face alone, this is evident in the conversations, tears, hugs, prayers, service, and tender mercies that have been poured out upon my family.  We are, and always will be forever grateful for these things.                

Heavenly Father has always blessed our family in so many wonderful ways.  He continues to do so with the helping hands of so many thoughtful people.  We are not alone in this.  We have the support of a loving Heavenly Father and so many others to help lift us along the way.  

127 days

It's a good thing I take regular showers.  I apparently am very thorough. At the beginning of August I found a small lump on my right testicle.  It wasn't anything glaring; it didn’t hurt, there was no swelling and I had no other symptoms.   It was hard, about the size of a pea sliced in half and stuck directly to the front of it.  "That can't be right," was my first reaction.  It was an otherwise normal Monday morning.  My alarm had gone off at 4:30; there was the gym, an effort at some meaningful scripture study and an attempt at a healthy breakfast. If I hurried, a titch of time could be spent with Jamie and the boys before off to work at 7:30.  My mornings are my favorite part of the day.  Perhaps it is a bit selfish, but I love the reverent solitude of it.  I secretly hope I have the house to myself for just enough time to feel the peace and comfort this routine brings. I find it keeps me grounded and focused.  Up until that moment, I had no idea I wasn't a perfectly healthy 34 year old husband and father of 3 boys.  It is weird to think now of what I didn't know then.  I have often wondered how long the cancer was present prior to me assiduously cleaning my under carriage.  Ultimately it won't matter, for it is far better to count the days until it's gone than scrutinize about the days it was there.  Since that is the attitude we have, we are planning on it being gone in 127 days from that morning.

I thought about the possibilities of what my discovery meant throughout the day.  I checked and rechecked myself an exorbitant amount of times.  I showed Jamie my discovery the next day.  I was sufficiently concerned at this point and needed an expert’s opinion.  We had just had our 6 year anniversary a few days prior and she has soft hands, this qualifies her sufficiently to be an expert.   I gave her little warning of my show and tell and her first words were “what are you doing?".  She had just returned home from the Temple and we were sitting on the couch in the middle of our living room.  Our conversation was undoubtedly very deep and very fulfilling to both parties.  Certainly it was eons away from a lump on my testicle, and perhaps my outward display of my inner conflict was an awkward interruption.  However, to my credit, she found the lump immediately, without being tutored. 

First thing the next morning I was on the phone with my doctor's office.  My provider was out of town, so I told them I wanted the first available, regardless of who it was.  A day later, Thursday, Jamie and I sat in the clinic room when a resident walked in.  In short order we got to the point and he did the exam.  He thought it might be a cyst.  I silently disagreed.  I asked him his bases for that very expensive, but well educated guess.  He thought it was too soft to not be a cyst.  In that moment I wondered how many cases he had seen of testicular cancer.  I'll set the over/under at 1, including me.  I'm not a pessimist by any means, just the opposite in fact, but I wasn't completely pacified. He didn't have me convinced.   What followed was a good conversation about a plan, including the real possibility of it being testicular cancer.   Eventually he gave me what I knew we needed, and we set up an appointment to get an ultrasound the following afternoon.

The ultrasound tech was very nice, and very comforting.  She had obviously been doing this for some time.  I laid on my back and watched the screen as she clicked away.  She took careful precautions to ensure I was covered up except for my newly minted models. She used a towel and with some quick origami had my testicles propped up and on top of a masterpiece for her and mine eyes only.  I was unimpressed with how much actually peered through her contraption. Perhaps she did it wrong, or perhaps I was nervous and cold.  She was very thorough, and got a plethora of images from several angles and views.  The last image she took was really the first time I was worried about having cancer.  I will never forget that moment.  She sat the transducer directly on top of the lump and snapped the picture.  The image showed a very clear lump of tissue, heterogeneous to the rest of the testicle.  It was solid, not fluid filled, and my initial thought was a big fat negative on a fluid filled cyst.  I distinctly remember thinking the words “I have cancer."  I immediately had tears well up in my eyes, almost without warning. They came so fast, almost spontaneous. There was nothing I could to do prevent it.  I did not panic, but was for the first time legitimately scared.  I thought about Jamie, Austin, Tanner, and Zachary.  I thought about my Mom, my Dad, and my family.  I laid alone, silently on that table as an array of thoughts and emotions flowed through my mind and heart.  I eventually reminded myself that I am not a doctor and actually know next to nothing about what I was self diagnosing. Still deep inside, there was a feeling of deep concern that I could not shake. It rocked me to my core.  Soon the tech returned after checking with the radiologist and confirmed the quality of the images was sufficient.  She said the radiologist should have the report up soon, and I should receive a call from my doctor the next day.  

That night after the kids went to bed Jamie and I had a decision to make.  As an employee of the very system I am now a patient in, I have access and permission to view MY OWN medical records.  Do we want to hear this from the doctor over the phone according to his schedule, or do we want to do this in the comfort of our own home, together, with no other distractions?  It was an easy decision for us and within minutes I had the report up.  It was short, and to the point. "Malignant tumor until otherwise proven."

I have cancer.  

Jamie and I cried.  We held each other on the couch.  We had a very intimate, private conversation.  That will always be a moment we remember with just us two.   It was sincere, it was raw, and it was emotional.  It was scary, and immensely loving all at the same time.   It was also filled with optimism, faith and hope.  We prayed, and we counted our blessings and no sooner than this happened and we heard the cry of our youngest, Zachary.  I got up and went to get him.  I picked him up and carried him back to the living room to be with Jamie.  As I rocked him I looked at his perfectly symmetrical face.  He gets so much of his appearance from his mother.  He has the most round, sky blue eyes of any of the 3 boys. He is extremely calm and good natured.  He has two older brothers that split time protecting and checking on him with trying to jump over and wrestle him.   I remember distinctly thinking, and then speaking aloud “he is only 5 months old, and his daddy has cancer" It didn't seem fair to him.  I could not get my 3 boys out of my mind.  What does this mean for them?  How do we tell them?   Austin is 4.  Austin is very smart, keenly perceptive, super sensitive and deeply caring.  Tanner is 22 months old.  He might have 2 Y chromosomes and 0 X's.  His latest trick is taking his dirty diaper off and finger painting the walls of his room during nap time.  He is courageous, strong, ambitiously wild, but also innately charismatic. That was beyond tough to think about.  It cuts extremely deep.  I love my wife and my boys just as I should. The same really, as any good father and husband does.  It is eternal and knows no boundaries.  Jamie and I spent much of that night and the rest of the weekend dwelling on these things.  We spent good quality time with the boys and focused solely on the important things in life.  The truck needs repairs, and the house needs work.  We have bills to pay and deadlines to meet.  None of that goes away, but somehow seemed to fall off the radar rather quickly.  All our problems seemed less problematic in that moment.  I learned real quick the best medicine in this whole ordeal would be my wife and kids.        

The following Wednesday we met the urologist and his team.  Jamie and I liked him very much.  He is smart, kind, and gives us hope.  He has a nurse practitioner that works with him as well.  She started the show by giving me an exam of her own.  She is much rougher than Jamie, and her hands are not near as soft.  I thought for a moment she might try an excise the tumor with her bare hands.  A lesser man would have made his way along the bed and up the wall to escape her death grip.  Jamie is officially my forever go-to testicular expert.  This was August 13, 2014 and we consider this the day I was actually diagnosed with cancer.  We actually heard it straight from the physician’s mouth.   He too did an exam, and reviewed my images once more.  "This is textbook testicular cancer."  By this appointment we had a weekend plus 2 days to scower the internet for what we are up against. We spent most of our time on pubmed and other reputable sources pouring over papers and learning all that we could.  It is dangerous to Google cancer, in case you were wondering.  We, however, wanted to be as informed and educated as possible about the ensuing decisions that would have to be made.  He told us what we already knew. My testicle has to go.  The procedure is called a radical orchiectomy.  In our crash course on testicular cancer, we learned that it is normal for one testicle to be larger than the other. I felt a sense of gratitude as I was at least getting to keep the larger of the two. We count that as a win.  He explained that testicular cancer is highly treatable and we will discuss things in terms of a cure.   There is a definite process to all of this, a very well outlined order of operations.  We would first do some blood work, specifically to look at tumor markers.  Tumor markers are in your blood and made by normal cells as well as by cancer cells; however, they are produced at much higher levels in cancerous conditions.  We also would need a CT scan of my chest, abdomen and pelvis.  These were scheduled for that same day and surgery was set up two days later.   Following surgery we would have to wait about a week or so to get the pathology report back.  At that time, we would take another blood sample to see if my tumor markers fluctuated post surgery.  With the pathology of the tumor, the CT scans and the various sets of tumor markers, we would be able to tell exactly what we were dealing with and we could then know what, if anything would be next.  

There are two main types of testicular cancer, seminoma and non-seminoma.  It is clearly advantageous to have a seminoma.  Non-seminoma's are generally more aggressive of the two.  The doctor thought we had caught it early, which gave us some relief.  He explained the typical route for metastasis (spreading) is first the lymph nodes and then the lungs.  Again, the CT scan would tell us this.  There are 3 stages with testicular cancer.  Each of those stages has 3 sub stages.  These are basically defined by how far the cancer has spread and how large the subsequent tumors are.  Generally speaking, stage I is confined to the testicle and usually requires no further treatment since the testicle is gone.  Stage II involves the lymph nodes and stage III is beyond, usually the lungs and if bad enough the brain.  Typically with stage II and III one is facing additional treatment.  We therefore were hoping and praying for a stage I, seminoma testicular cancer.  Time would tell.  

We learned really quickly the toughest part of all of this would be the waiting.  With cancer you are always waiting.  Waiting at clinics, waiting for news. waiting for labs, waiting for images, waiting for intervention to start, waiting for side affects to start, and then immediately waiting for them to stop.  If you are going to get cancer, you are going to have to get used to waiting.  

On Friday, August 15, I had surgery.  It was as uneventful as a surgery could be.  It takes about an hour; they go in through my abdomen by making a 2-3 inch incision and pull out my right testicle along with all of its adjoining vessels through the inguinal canal.  Prior to the operation, the surgeon discussed with us my exam results.  The CT scan showed that the cancer had spread to a para aortic lymph node.  It is slightly less than 2 cm. One of my tumor markers was elevated, although not terribly, and the other two were normal  The elevated marker, HCG,  was about 8 times the upper limit of what is considered normal.  He was staging me at stage IIa metastatic testicular cancer.  He wanted to see me a week and a half after surgery to see how I was healing, check my tumor markers, and discuss the next round of treatment.  That treatment would depend on whether it was a seminoma or not, and the level of my markers.  At that moment, 3 treatments were on the table; radiation, a RPLND (operation to remove my lymph nodes) or chemotherapy.  

I recovered quite well after surgery.  It would have been flawless other than the stomach bug that ravaged our household.  Austin and Tanner had diarrhea for 11 straight days with the occasional vomit to keep us on our toes. It was relentless, and honestly quite disturbing.  Jamie had it, and then I had it the Monday following surgery.  The very moment Tanner started getting over it he got an additional virus causing a nasty set of hives,   Zachary then got an ear infection, and spent the better part of one night in the ER for an unrelated episode.  Jamie gets mother of the year for caring for 4 babies, all the while herself being sick. We were an absolute mess. The Wednesday following my surgery, ready or not, I went to work at my office, solely to escape the carnage.  

The next week and a half post surgery passed slowly.  Like I mentioned, the waiting is tough.  I healed quickly, and got better and stronger each day.  The plague of viruses vacated our house and we were recognizing a similitude of the life we had prior to cancer.  We hoped and prayed for good test results.  Declining tumor markers and pathology showing seminoma gives us the most options and the best outcomes.  The antagonist to this is non-seminoma and elevated markers.  That means we won't be candidates for either radiation or surgery and it’s straight to chemo.  

On Wednesday, August 27th, we had our follow up appointment with the surgeon.  We had a very frank, honest discussion about where I was at. It was very sobering.  It was not the news we were hoping for.  My pathology shows that my cancer is classified as a non-seminoma.  Specifically, it is 95% embryonic carcinoma, and 5% seminoma.  There are a few subtypes to non-seminomas, embryonic carcinomas is one of them.  All 3 of my tumor markers were higher than they were prior to surgery.  Two of the three were above the upper limit of normal.  The highest, HCG, was almost 400 times that upper limit.  It is very apparent there is still cancer in my body.  He explained that my only viable option at this point is chemotherapy.  Surgery might be an option later, but the risk of pulling my lymph nodes now is that the cancer could be past them and I would still end up doing chemo.  The plan is 3 cycles of BEP.  Following the chemotherapy they would do a follow up CT scan to see what was left.  Any residual tumors would be removed with surgery.  There is a very good chance we get it all with the chemo.  Despite the tough news, we are still looking at about a 90% success rate.  Assuming we get it all and I go into remission, he thought the odds of it returning could be as low as 5%.   My care would now be transferred over to an uro-oncologist.  The surgeon said there is little time to waste, so he set up my appointment for me for two days later on Friday to see the oncologist.  The hope was that I would start chemo on the following Monday.  

On Friday, the 29th, we saw the uro-oncologist.  He is a specialist in this type on cancer and sees only testicular, prostate, and bladder cancer.  A few years ago my office used to be located down the hall from his.  He walked in and recognized me immediately.  He is a fantastic physician, very smart, and very accomplished.  He explained my cancer in much greater detail as well as the chemo regime I would be facing.  He explained that embryonic carcinomas grow extremely fast, and spread very quickly.  He explained that it is the same type of cell that first exists when an embryo is in its earliest stage of development.  These types of cells must replicate quickly to form an embryo and eventually a baby.  He said to think of how fast cells must replicate to form a baby.  These are the same type of cells that make up my cancer.  He said that usually these types of cells go away, but for some reason they have come back as cancer for me.  The good news is that chemotherapy specifically targets fast replicating cells.  This means since my cancer replicates, grows and spreads so quickly, it is extremely sensitive to chemotherapy and specifically cisplatin based chemo regimes are very effective. He was extremely optimistic, and so are we.   

My chemotherapy will consist of a cocktail of 3 types of chemotherapy agents.  The main one is cisplatin, and it will be coupled with etoposide, and bleomycin.  My therapy will be given in 3 cycles, each lasting 21 days.  Days 1-5 (given on a Monday-Friday) of each cycle are the heavy chemo days.  They said to plan on about 7 hours each day.  They will start me out on a bag of saline to keep me hydrated and to protect my kidneys from the toxic nature of the drugs.  Next will come dexamethasone (a steroid) and either 1 or 2 anti nausea medications. One is short acting, and one lasts for 3-5 days.  After each of these has been infused via IV they will start the chemo drugs.  Again, depending on the day, I get 2 or 3 of the drugs mentioned above.  After those bags have been hung and infused they will follow all of this up with another bag of saline.  After that I go home, and then come back again the next day for the same thing.  Easy peasy.  On the second week, I come in on day 9 (Tuesday) and get labs drawn, and see the physician.  One of the main side effects of this chemo is it reduces the agents in your blood that help fight infection.  Since I will be immunocomprimised they will check my blood counts each week to ensure it is safe to move forward with therapy.  If they are too low, treatment would be delayed until they reach a safe level.  After I see the physician, and he gives me the green light it is off to more chemotherapy. I only receive the bleomycin on this day and it is a much shorter day in infusion.  I get the rest of that week to rest and deal with the side effects of the therapy.  I come back the following week, on day 16 (Tuesday) of the cycle to get the same chemo I did on day 9.  After that, I get the rest of that week off to recuperate and prepare for the start of the next cycle which would start the following Monday and we would repeat this process over again.  

Again the physician stated it was important that we start right away.  The plan was to start on Monday, September 1st.  Unfortunately they do not start new chemo patients on a holiday (Labor Day).  I need the chair for the entire week so my cycle 1 day 1 start date was pushed back to Monday, September 8th.  We are excited to start chemotherapy and are extremely optimistic about our prognosis.  We will always have faith and hope and we will always keep fighting.