Surviving Cancer, My Story Part 7: Will you remember how much I love you?

Part 7:  Will you remember how much I love you?

(Dan and Cole, right before Chemo)

We started making phone calls and sending out the emails revealing the news about my husband’s cancer.  Oddly enough we weren’t really alone on this front.  We had two young neighbors who had cancer the previous year, both in remission at the time we got our news.  One had suffered from breast cancer, and the other had cancer in his throat.  I had no idea at the time how significant their stories would play into mine later on.  I remember hearing about our neighbors four houses down the street. Not knowing them personally, the announcement of a young 30-year-old man receiving cancer news didn’t strike me the way that it should have. I probably allowed myself to say, “that stinks” and then went into the kitchen to make dinner.  

I regret regarding other’s tragedies as a minor inconvenience.

My husband and I were both surprised at the how easily our families took the news.  I wondered sometimes if they had heard us say the word ‘cancer’.  Maybe they were thinking, “it’s just a little cancer, no big deal”. What is the appropriate response anyway? The members of our church congregation were sympathetic and concerned, but when Sunday hit I felt as if all eyes were on us as we entered the room.  We were now wearing the dreaded scarlet letter, only it was a “C” for Cancer.  Looking back I am positive that this was more of a self-projected fear than actual reality.  Feeling normal was just not an option when there was a loom of uncertainty following us everywhere we went.

There were lots of tasks to complete before we could begin doing chemo. Now that my husband’s life was on the line, we had to explain to our son that daddy was sick and would be away from home a lot and would not be able to play with him anymore.  The weekly daddy/son swim dates would end as well.  My husband would be getting a double Hickman placed in his heart as soon as possible, which would not allow for anything but sponge showers until it was removed. We decided to get our family picture taken.  No one said it out loud, but if he were to die it would be the last opportunity for us to have a healthy looking photo to remember him by. Our doctor recommended the embarrassing task of banking storage of my husband’s sperm. This was a special prescription strongly urged since we were still a young couple and would surely want more kids. The chemo he would be getting was equal in strength to what Lance Armstrong underwent to rid his body of over 12 large masses throughout his various organs, including lungs and brain.  Our chances for conceiving after the treatments were slim to none and the hospital did not want liability for that.  There would be a minimum of 3 appointments for this at a whopping $100 per deposit along with monthly fees while the storage was active.  With an infant in arms sitting in the waiting room at the clinic, also doubling as a fertility treatment center, I felt the stares of the women in the office desperately trying to get pregnant. It was as though they were saying, “Why is this lady here, she already has a baby?”  There was paperwork I had to fill out and sign agreeing to be the beneficiary of the deposits in the event of my husband’s death.  Although having another child was not even close to being on my mind at the time, I wondered if there would even be a future to consider additions to our family. We had talked about having six kids when we got married and I was realizing I may be left with just two boys. I felt sorry for myself.  My husband had cancer, and I may never have the little girl I so desperately wanted.

(Dan holding baby Ethan a few days before Chemo)

My husband got off the phone with his work after explaining to them he wasn’t going to be coming in for six months or longer and needed to start disability leave.  There would be a week without pay before we qualified for the benefit–a type of punishment for our becoming such an inconvenience to society I guess. 60% payouts of our income hardly covered our bills, especially with diapers and formula added to the expenses, not to mention the monthly storage fees for our unborn children.  Would I have to get a job? There would be no way I could work, and take care of my sick husband and the boys at the same time, barely a month after having my own surgery.

The only thing we could do was exercise some faith and hope the finances would work themselves out, but of course they never do.  We were never wealthy, or lived a lavish lifestyle, but always had enough money to be comfortable and were never left wanting.  This made it especially hard to be in the position where help would be necessary.   Thankfully, our church stepped in and set us up on their welfare program.  I was grateful, but deep down inside I was embarrassed, and annoyed.   

We were starting a very public medical battle, one you can’t hide when your bald, thin, and look like your knocking on death’s door.

The position of needing help forced us to wear all other aspects of our lives on our sleeves for everyone to see and make whatever judgments they wanted.  I was humiliated to say the least about our financial predicament.  The era where ‘everyone else knew how to make better decisions than us’ began.  I felt judged. I realized this when our church leader told us we ought to be grateful for the two kids we had and told us to immediately destroy our ‘new kid storage’, sealing the fate of our never having any more kids if we were to survive this horrible injustice. Was I really expected to give up my agency just because we won the lotto of worst diseases? Again it seemed more of a punishment than a hardship.  Every week we would have someone coming over to our house to scrutinize what groceries we would need and write-up a food order for approval before we could get the limited items we needed. There would be no more grazing aisles at the grocery store looking for food we might be in the mood for that day, or snacks our son was used to having every day which were now considered a luxury item, and not a necessity. I almost hated this more than I hated the cancer. I would have such little control over anything from this point on in my own adult life. I knew my attitude was bad, but I didn’t care. No one wants to be a charity case.  I felt like I was being forced back into childhood where you need a mommy to manage your life because you can’t do it for yourself. My own health was not good as I suffered from Poly Cystic Ovarian Syndrome (PCOS), a liver malfunction that mimics diabetes resulting in insulin resistance. As long as I ate a strict diet of range free, organic, and low carb foods accompanied by daily exercise, my body resumed normalcy. I was accustomed to being picky with what foods I bought and ate to maintain my health. My options for managing my own health went away now that I was enlisted to take care of my husband and was at the mercy of others.

We had so many T’s to cross and I’s to dot that it was impossible to keep the details of what was happening on the down low.  The first couple of times I told the current events I would melt down into tears. Soon it became routine. I resembled a broken record; I became emotionless.  This survival technique made it possible for me to be normal everyday.  It was as if I was talking about our neighbor or someone else, when I was really talking about my family.  These problems weren’t mine, they were someone else’s and I was merely gossiping about it.  In this way I could give others the comfort they needed to not feel awkward around us.

I only remember two things we did as a family before we started the chemo journey.  We needed reminders that we were still the same family as we were before we got this terrible news. We needed down time from all the stress.  I posted a blurb about taking our kids the movies on my mommy blog.  This was the first lesson I got that people were indeed watching our every move. We got a phone call from a church leader who scolded us for spending any money on such wasteful activities. Being on the receiving end of assistance qualifies everyone else telling you how and when you should spend your time and money.  He had received a phone call from someone who had read my blog post and was upset that we would spend any money while we were on welfare assistance.  He refused to tell us which one of our neighbors felt this way. Surprisingly this didn’t make me mad, it just really hurt. $11.00, was the grand total spent on the matinee.  I don’t remember what show was playing, but the genre was of the kid variety. From this point on we would be under quarantine, locked away in our house, watching our back as to not create reasons for people to idly gossip about our situation. I stopped blogging that day.

(Cole and daddy)

Our family picture day was the second good memory amidst the storm.  It was at a park. The natural environment made it easy for us to let lose a little.  Over 100 pictures were taken, with us traveling to different areas for variety.  With each new shot came feelings of happiness for us because we were wearing smiles for the camera. Soon it was like the camera wasn’t even there.  We were just a family at the park spending time with our loved ones.  We did love each other, and the soon battle ahead would threaten those bonds and take priority away from it.

My husband was standing by the pond with our 3-year-old, holding his hand staring at the swimming ducks.  Cole didn’t talk much at this age and communicating with him was frustrating to us both, but they looked serene. I watched them for a while. I let them have time to create the moments that would be important to Dan later.  He crouched down so that he was right next to his son.  Still holding his hand he looked at Cole and began to speak softly, as if he were asking, “will you remember how much I love you” while his thoughts finished the sentence with “…if I die?”  I knew this was on his mind.  I could feel his soul whisper it to me while we were having our picture taken without our children.  We faced each other, exchanged a million thoughts while not one word was spoken between us.  Any hard times we had in our marriage up to that point were forgotten and dismissed as unimportant.

That day I accepted that he would have an amputation. I just didn’t want him to die.

Dr. Chen’s office called to schedule a surgery for the Hickman placement. A long tube with two ports coming straight out of his chest from his heart would be access the chemo would require.  It was too powerful for regular veins and would need immediate disbursement from his heart valves into the blood stream. This was the only way to prevent his veins from melting in the process.

 The Hickman would be our new best friend and worst enemy.