Surviving Cancer, My Story Part 20: New hand

 Part 20: New hand

It felt like Dan was in the hospital for a long time after his surgery. What they had done to his hand was extensive.  His reaction to the pain medication was just as concerning.  Any time he ate or drank anything, he instantly threw it up. He threw up every hour for a solid week before anyone connected his lack of tolerance to the combination of strong drugs being pumped through his veins for pain.

 (Dan's hand right after surgery)

I traveled back and forth between home and the hospital, where Dan was learning to deal with the knowledge that his hand was permanently changed.  The large bandage running from his fingers all the way down to his elbow made it easier to avoid the reality of what was really underneath it all.  His fingers were individually wrapped.  The surgical bandage tape was unique in the way that once it touched your skin it stuck and clung, preventing movement without pain.  His new hand was now the focus of everything.  What does it look like?  What does it feel like? How will this affect Dan's every day life from this point forward?  Although unspoken, these questions were the only things going through our minds.

The bandages prevented questions from getting answered right away. It was obvious that his pinky finger had suffered the most trauma from the surgery.  It curled into a sideways hook, and seemed to nestle against its new neighbor.  Color in that finger seemed to fade a few days after surgery.  I complained several times before a nurse finally agreed to unwrap the tight bandage to see if everything was okay.  As she peeled away the gauze a large black bruise showed itself, running along the entire side of the finger.  The bandaged had been wrapped too tight during surgery causing blood flow to become minimal to the baby finger.  Color began to come back as well as sensation and pain. 

Little nuances like these caused us great stress in the beginning before we had a chance to know what we were really up against.

As Dan finished physical therapy to regain balance, he began to feel good enough to come home.  His tests showed his blood cells hadn’t been recovering the same as they had in the past.  He would need 4 pints of blood, two more blood transfusions before they would release him.  It was hard for me to watch someone else’s blood being pumped into my husband’s body. As grateful as I was for modern medicine, along with the gift strangers were giving to the cause of Dan’s red blood cells, I had to be away while he got them. 

The next few weeks consisted of eating, playing with the kids, and engaging in fully conscious conversations before we went to bed.  His last round of chemo was over a month behind us, leaving his body and his mind alert, and his own.  It had been months since we laughed and joked with each other. I couldn’t imagine going back to the hell we had just escaped.  Our appointment with Dr. Randall would be the only way we would know for sure how the surgery and treatments had affected Dan’s cancer, and how much more we would still have to do.

(Dan, and Cole, sometime after surgery) 

Dan began to put on weight, and started to take small walks up and down our street.  An 8-pound weight gain was our most exciting news when asked about his progress.  It felt silly, as if we were announcing what our baby weighed when he was born. 

“Are you nervous?”, I asked Dan as we drove to the hospital to get his bandages removed.  It was the first time we would get a chance to look at the damage, see what was truly cut out, and what was left.

“A little bit”, he admitted, “I’m more excited to get this huge bandage taken off.  It’s hot, sweaty, and I can feel my skin peeling away everywhere underneath.  It’s uncomfortable.”

He spoke unemotionally as he drove.  He turned to me and asked me for the first time since we started treatment how I felt, “Are you nervous?”

No one had known how I truly felt throughout the entire cancer journey, much less my husband.

It took me off guard that he asked.  I paused before I answered with the truth, “a little bit”. Between his extremely bruised baby finger and the 20% that was cut out, Dan had experienced several side effects. He felt sharp shooting pains from the top of his fingers down to the wrist, probably nerves of the missing parts trying to find new connection. His hand would be full of stitches, swelling, and bruising.  I knew it wasn’t going to look the way we had previously pictured it in our minds. The last 6 months hadn’t prepared us enough for the change.

I watched my husband talk as if none of what we had just gone through was reality, but just a horrible story we had made up.  The only evidence was his hand and skinny bald body.  He seemed to be coming out of the emotional dark hole he had been in.  After the roller-coaster forced upon our marriage during our cancer battle, I was more fixated on the recovery of our convictions for one another than the one for his hand.

 “I’m really glad you were there at the hospital when I woke up”, he said, “It was really good to see you there.”

He had no idea that these small words were confirmation I needed.

It was imperative to know that he thought I had done a good job of taking care of him.
 

As we wait for the bandages to be removed from Dan’s hand, our nurse Cherry gave us the news that the tumor was downgraded from ‘high grade’ status to ‘low grade’.  If the tumor board had made this decision based on how his tumor looked once they removed it, it was because the ‘high grade’ cells were 100% dead.  Six months of built up stress waiting to hear these words, were suddenly released.

A second nurse grabbed some scissors and began to cut at the large bandage on Dan’s hand.  I could see the excitement on his face.  She began to peel away the casted outer layer she had just cut, only to find other layers of gauze, cotton wrapping, and tape.  His face winced as she picked it away from his skin.  It was obvious that it hurt.  As the physical pain was felt, the emotional shock began to take it’s place as first vision of his hand emerged.  He pulled his good hand to his mouth in a fist, gasped, and looked away.  The nurse could see his anguish.  She stroked his arm and asked, “Are you okay?” She began to reassure his obvious fears, “I know it looks bad right now, but as the swelling goes down and the muscles in the palm of your hand get built back up, it will take on a more natural look.”

(Dan's right hand,after the initial bandage was removed)

Dan looked at his hand again, and from then on never looked away.  He became fixated on it, stretched out in front of him, a part of his body, whether he like it or not.  It was a lot smaller than either one of us had expected. He tried to move his fingers. The pinky lay still, he had zero control over it.  He looked nauseated at the new realizations. The nurse instructed him not to move his hand until he had permission from the doctor and she got up to go get him.  Dan couldn’t take his eyes off his hand. He was speechless. I saw his silent panic.

His head swayed back and forth behind his fist, still covering his mouth. “Oh hunny!”, he mumbled as if he were talking to himself, “it just looks so weird….i didn’t know what it was going to look like.”

I knew he needed my reassurance. “Look at me”, I told him.  He seemed to not hear me. He didn’t move.  “Look at me”, I said again more firmly.  He allowed his eyes to leave his hand and looked into mine, as I spoke to him with absolute confidence, “It’s okay… It’s okay!”

He repeated one word, “okay”, and then grabbed the towel the nurse had left him and began to wipe his arm.  The cast had been wrapped so tightly that parts of his arm were lightly bleeding, the other parts covered in faint iodine, and scabs.

(first movement after surgery)

While he did this I looked at his alien hand from where I sat, trying not to draw attention back to it’s deformed appearance.  Logically I knew it could look worse, and I was confident that the surgeon had made his hand look as cosmetically good as possible, considering all that had to be removed. There was undoubtedly more emotion connected to what the look of his hand represented opposed to what it actually looked like upon first sight.

 I began to break the silent streak in the room by telling Dan in a less serious tone that as soon as the swelling went down and the stitches were taken out it would be hard to notice at first glance that anything was different from a regular hand.  Dan needed all the positive reinforcement he could get at that moment.  No matter how scary his hand looked I was committed to telling him otherwise.

Over 30 outer stitches began at his wrist atop his hand and roped around the top and down to the bottom center of his palm. Where they held the skin together, there were large amounts of peeling, and small scabs.  Any weight placed on the hand could rip it right open.  His palm was now void of the middle indenture every hand had.

As our team of doctors and surgeons came in, he still couldn’t stop looking at it.  He held out both of his hands to compare.  One healthy and free from restriction, the other deformed, skinny, and lifeless.  Dr. Randall looked over each part in detail and confirmed that it looked amazing considering.  He prescribed him to rest his hand, put it into a secondary minimal wrapping, leaving the fingers exposed.

Dan was to manually stretch his fingers several times a day in effort to gain the first stage of mobility back.  Before we left Dr. Randall gave us the good news that we had beat the 90% goal of tumor cells killed.  Although low-grade cells remained alive through the treatment, the most dangerous high-grade cells that had been killed off moved Dan’s cancer into the stage we wanted it to be in.  Even though he was scheduled for 2 – 4 rounds of post surgery chemo, we were grateful it wouldn’t be anything near the 16 rounds it could have been.

That night we lay in bed and talked about the day’s events.  “I was overwhelmed when they took the bandage off”, Dan admitted, “they cut a lot more out that I thought they would.”  He continued to tell me how freaked out he was at his alien looking hand, and was only able to focus on the reality of everything once they had re-bandaged it. There was a certain safety behind the bandage of something ugly, something ashamed of. No one need know the details or complete truth of what was going on underneath.  Dan wore the sock and bandage to hide his hand from scaring our son, our friends, and himself.  He was afraid of the reactions he would get from revealing the truth of what it actually looked like.

Dan’s hair was starting to grow back a little by this point.  Peach fuzz made his arms and legs itchy, and tickled my face as he kissed me, from his upper lip.  His body was slowly trying to recover from all that he had physically been through.  He was starting off in a far worse state this time around from when he first started chemo, and it both concerned us.  Instead of 200 pounds, he was barely at 142, a weight he hadn’t been since middle school. 

He told me a story from before his surgery, at his shock when discovering his lowest weight. He had gotten out of the shower and looked in the mirror.  He didn’t recognize the skeleton he saw. He was so thin he could hardly believe it was him that he was looking at.  His shoulder blades poked out like wings on his back minus any muscle or meat attached to the bones. We were both halfheartedly laughing, mostly to keep the pain of sadness from creeping in while our minds envisioned the thought.

 Chemo can do a nasty number on the body. It’s strange to realize all the damage it can do when at the same time it’s power against a mutation in cells has an effective rate of only 50%.

We talked over the factors of whether he would be able to do that again.  The side effects alone put concern and doubt in our minds that he would be able to physically survive 4 more rounds.  Whatever it turned out to be, we were happy to be where we were at the time, past the hurdle of amputation.  It was all we had been working toward for 6 months.  The surgery was over, the cancer out.

(most cartoon characters have 4 fingers instead of 5)

Our conversation turned to funny business as we joked about his hand looking like a cartoon character’s hand, with only four fingers.  We laughed about how his hand would look in his gloves. I offered to perform a “removal and stitch” job to make them customized for his fit.
Laughing about cancer was far more healing than crying about it had been.

The following days as the “new hand” was introduced to Cole and into our home great lengths were taken to let Dan know we loved him AND his new hand, no matter what it looked like.  Our son had witnessed some horrible things as a three year old, but always acted like he understood what his dad was going through and showed him empathy, and love. 

A counting game between the two at bedtime became a way for them both to accept the change.  One to five is what Cole would count on his hand, while he counted his dad’s right after. “One, two, three, four”, he announced as he took Dan’s hand and held it up to his comparing the difference.  He blew on the stitch line, kissed it better, and offered a bedtime prayer, blessing his dad’s broken hand.  He became so protective over his dad’s feelings, and hand, that he saw it as his personal quest to make sure it got better, even if it meant telling his dad not to touch his own hand. He was as desperate to get his dad back as I was to getting back my husband. 

(Dan, Cole, and Ethan)

 We both had been missing an intricate part to our hearts, leaving our happiness incomplete.  We had centered everything in our lives around making Dan better.

If he were better, our family would be too.

Living life without him was nothing our family could consider.

As my young son found things around the house and asked me to help him bandage his own hand, I saw that what we were going through as a family was teaching him lesson of love and empathy, lessons he probably wouldn't learn at that age otherwise.

I wanted to believe our whole family was learning this lesson together.  I had been told a lot over that year the well-known phrase, ‘Whatever doesn’t kill you makes you stronger’. I had never taken that quote so literal as I did while fighting the battle against cancer. I was looking forward to the part of our journey where the bonds we had as a family became stronger.  After all, the strength my young family deserved, I imagined, would come because we conquered this trial together.