Part 23: Transition, no one says ‘when I grow up I want to get cancer.’
The Hickman removal procedure went well. Dan was relieved that one of the more physical parts of his cancer would no longer be a burden to his body. Elements of the disease were quickly being removed from Dan, and our family, now that he was taken off the ‘active’ cancer patience list. First the tumor, then the affected parts of his hand, followed by the tubes, drugs, and vomit bins strewn all over our house. It felt good to rid ourselves of something so unhealthy.
“Do you think it will ever come back?”, I asked him, as we sat on opposite ends of the couch staring at one another.
“No”, he replied, “It’s like they took my batteries out, flipped them around, and now I’m good for a little bit longer”. He smiled at me in an effort to reassure me.
His sense of humor seemed to be coming back. It had been close to a year that I hadn’t recognized who the man I married was. His emotions had become a roller-coaster at best, leaving me on edge to his unpredictable moods and behavior.
As we continued to talk, I asked him if he thought there was a chance our sons would ever get cancer due to their gene pool. The thought had crossed my mind several times as I watched our kids go through the early stages of learning to walk, talk, and recognize that they were loved by a family. My husband had gone through these stages as well once, with a mother who couldn’t have ever guess her son would go through what Dan had just experienced. It would be like asking a child what he wanted to be when he grows up, just to hear him say, “when I grow up, I want to get cancer.”
“By the time our kids are adults, there will probably be a cure for cancer”, he theorized, “I will be someone who survived cancer the old-school way, while younger generations might only need to take a pill, or a shot, like an antibiotic”. My mind tried to capture the vision of an older man showing his battle-wounded hand from a deadly disease to his grandchildren while they gawk in amazement.
(Dan's first growth of hair post cancer)
He still couldn’t move his hand or fingers very well, and had become very frustrated, the direction pointed at me, and our children. His irritation level had increased significantly since he was no longer under the influence of chemo, and he was more alert during the day, aware of his permanent hearing loss, nervous system damage, and delayed memory.
“I can’t wait for life to be back to normal again”, he said, as his eyes starred off into the distance. What was normal?, I thought. We had been focused on his cancer for so long I hardly could remember what normal in our family looked like.
I had started to recover from the staph infection I had been gifted from my visits to the cancer hospital, while Dan continued to gain weight, and small patches of black peach fuzz started to emerge all over his skin. It resembled the hair on a newborns body…new, thin, and the wrong color. Before Dan’s chemo, a common joke between us was the lack of facial hair he was able to grow in a normal amount of time. So naturally it was a subject of surprise and laughter that he now was growing in a thick amount of black hair on his upper lip. His chemo not only cured his cancer, but gifted him super-human hair growing powers.
My in-laws came to town to visit Dan’s older brother. Being less enthused to spend time with a family that spent more time on competing for height and who was more popular to the parents, than building sustainable relationships, I decided I should rest from my fever that seemed to fluctuate between 102 and 104 degrees in the previous week while my body fought the nasty infection I struggled to get rid of. I stayed in bed most of the weekend, alone.
Ironically I had started to feel better by Monday, shortly after Dan’s parents left town. Dan continued to seem more irritable than usual, in addition to extra sarcasm that he undoubtedly picked up from his parents visit. It would be much later that I would learn the ideas that had been planted into my husband’s mind, by his parents, through subtle irrelevant conversation. These ideas and suggestions would eventually grow in his mind as rampant as his cancer had been in his hand, damaging everything in it’s path in the same way it would for our marriage.
Bitterness grows just as effectively as a disease. Once we allow it to settle into our hearts, it is there, waiting for nourishment and attention to feed it’s destructive intentions.
How his parents dare accuse me of alienating him from his ‘family’, meaning them and not myself and his kids, was beyond reason in my mind. I helped save their son's life. Pain flooded my heart the first time I heard him blurt out this phrase in a moment of frustration toward me. I sensed the blame that he was starting to adapt in his mind toward me, as his parents had decided from the beginning. After all, wasn’t I the cause for their little boy to grow up and have to become a man?
Dan’s physical therapy had been underway for several weeks now. His fingers were stiff. His pinky finger immovable. It would never be functional again, merely a cosmetic remnant for distracting the eye to what had been removed. Every time he tried to use his hand to pick up an object he felt that his hand would rip open, down the stitch line from the weight.
Those days were full of pain, frustration, and realization that not everything would be going back to normal. Some things can’t be undone, only remedied by a new resolution. Dan was faced with the decision of either accepting this reality, or fighting it. His hand would never be the same, and neither would the rest of our young family. It would either get better, or get worse, the difference made by what we consciously would decide.
(Cole's first stitches after an accident at pre-school)
Halloween was right around the corner. We planned our costumes to reflect upon what we saw in the mirror, and the complexity of the war we had just been in. Pirates! We were all going as pirates. Dan’s patchy hair and tall thin frame would be perfect. The week before the holiday, Cole had suffered his first stitch job from an accident at school to his eyelid, leaving him with a brilliant bruise around his eye. There would be no need to drum up anything more than ragged costumes. We all looked haggard, rough, and worn down, perfect for the role. It was the first time we had a real activity with the four of us together since before Dan’s first treatment.
(Halloween 2007, Pirate Cancer Survivors)
A few weeks later we took our first date since the beginning of our nightmare. We met my cousin and his wife for bowling. Although Dan had started looking so much healthier and had gained some weight back, his bowling demonstrated he wasn’t quite whole yet. As he threw the ball back and walked forward to released it onto the lane, he almost fell over each time he let go. He was used to weighing more than he did, also being stronger than he had been left. Little nuances like this and the permanent effects of his treatment were starting to wear on him, increasing his distant demeanor, and irritability.
(Ethan's 1st Halloween)
The letter written by a local business owner of a financial institute flashed through my mind. He had included his note with a check made out to our family during the community fundraiser the month prior. His wife had previously had cancer. He expressed his grief for our family, and his personal sentiments. He said after going through something like cancer, it could affect you for the rest of your life. It has the ability to destroy the rest of your life, and your relationships, if you let it. His last counsel in the letter was to simply not ‘let it’. At the time it meant a lot less than it was starting to mean to me as we were moving to the transition phase of our year with death.
Still in somewhat denial of what was really going on in my home, I attributed Dan’s destructive behavior to post traumatic disorder from his amputation. I encouraged him to see someone. Once a week he started going to these appointments. I joined him at the end of the month visits, to get caught up to, and understanding what his current needs were. Everything in my opinion could be fixed, nothing couldn't be undone with a little effort, and determination. Little did I know I had need of overcoming the trauma I had experienced as a woman who watched her husband slowly and painfully almost die.
I was still in a state of abandonment from those around me not realizing that the care taker suffers just the same, if not more, than the loved one the are watching die right in front of their eyes. Like watching the same horrifying image of the World Trade Center fall, or video clips of war from the holocaust, over, and over again, they begin to haunt not only your mind, but your heart.
(World Trade Center Falling)
Much different than starting out with a deadly disease, where your doctors explain in great detail what you are up against, and how they plan to save your life, networking with specialist on your behalf, trying to leave the cancer world was like being handed an ‘all-clear’ pink slip on your way out the door while hearing someone shout out, ‘Good Luck!’.
My husband was trying to transition back into a world he was seeing through different eyes, and didn't quite belong in anymore. I was trying to adjust to a man whom I still recognized as my husband, but registered as a stranger to me while I watched him enter a new state of limbo. He was no longer a cancer patient, but not quite yet a husband and father again, with the stability of a daily routine providing for his family.
The question entered my mind several times, ‘Where do we go from here?’
Although lost, and nothing the same as before, I clung to the words ‘this too shall pass’.
These words gave me the strength to believe that the trials we had faced, and were still up against, would subside. The consequences otherwise were not something I had ever considered, nor wanted to.
I was determined to believe that ‘this too shall pass’, and we would both be closer because of it.
