Monday, January 31, 2011

Humility 101

I can't begin to tell you how worried I was about our finances.  Yes, we were waiting for the consolidation loan but we would be losing Rick's salary and had no idea how long we would have to live on my salary.  Thinking about the mortgage was making me sick to my stomach.

Okay, so deal with it, Jane.  No more day care for Michael, he'll have to stay home.  Cut back on everything.  Go to work, take care of Rick?  Who will watch Michael?  Rick can't be left alone.  How do people do this?

When I went to pick up Michael from day care, I told Miss Doreen, his babysitter that Mike would be staying home.  "Michael is no trouble at all, Jane.  Really, I can watch him for you." she said.  I couldn't do that to her.  It wasn't right.  I told her that I appreciated the offer but I had to make other plans.

Rick's mom offered to stay with us to watch Mike and care for Rick.  It sounded like a good idea at the time.  I was able to go to work a little late after Paul had come to take Rick to radiation.  Michael could stay home with his grandmother.  Radiation would take three or more hours, with the ambulance ride, radiation, and return trip  I would come home from school at my regular time.

However, when I came home from school that day, Michael met me at the door.  He was upset and I tried to figure out what had happened.  Rick was in his comatose state and my mother-in-law looked a bit overwhelmed with Michael.  It was too much for her.

I didn't have any idea how my mother in-law was feeling.  I could not begin to understand how heartbreaking it was for her to see Rick like this. He was dying and there was nothing any of us could do.  She wasn't herself and the stress of having a three year old that was out of sorts because his world was a little bit nuts at the time, just didn't mix.  It was unfair of me to have asked her.

"Okay, Doreen, I'm going to take you up on your offer.  I need you to watch Michael.  I said through tears.  I can't pay you but I will sometime; I just don't know when."  "Jane, you concentrate on Rick and I will take care of Mikey.  He's my favorite and he's no trouble at all." she was crying too.  "It would make Tom and me so happy to be able to help you in this way."  "Doreen, I can't thank you enough and I will pay you back." I promised her again.

I am so blessed, Lord.  You are handling this because I've got nothin'.  Please don't let him die.

I was amazed at their generosity.  Doreen was truly an angel.  Michael was happy as a lark to fly into her arms the next day at the door.  "Don't, Jane!" she said looking at me crying.  "You go and take care of Rick.  Mike will be fine. Go! Don't start or I'll be crying too."

This was the beginning of a flood of generosity that never stopped coming.  It is an overwhelming feeling to be in such need that you have to ask for help.  I felt pitiful; it was a ridiculous reaction but I truly felt pitiful.  I felt completely humbled by this and it was just the beginning. 

My friend from school called and told me that she had set up a network of people who would help us.  Stacy organized meals for an indefinite amount of time.  Anyone who offered help was directed to her; she did all the scheduling and contacting people.  It was incredible.  We were helped by our friends, my friends at school, neighbors and the friends of all of our family members.

Each day someone would come and deliver a hot meal to us.  These were precious to me.  I was running around like a loon taking care of Rick and the boys; I really didn't have time to cook. I had heard of this happening to others in need but I didn't understand the impact it would have on me, until I was on the receiving end of this help,

I don't want to have to have help!  I am so uncomfortable with this. I am pathetic.  I should be able to do it all! I don't want to be the receiver; I am not good at accepting help.  I need help.  I just don't want Rick to die.  Thank you, God, for taking care of us.

One night my good friend, Norma arrived at the house.  She gave me an envelope and told me not to open it.  "It's from your friends and you don't need to know who it's from, just know there will be more.  That's all I'm going to say.  I love you and I'm going home." she hugged me and left.

I sat on the couch and opened the envelope.  It was filled with cash, a lot of cash.  My heart was in my stomach.  I was crying and rocking.  I didn't want this; I didn't want any of this.  I didn’t want any of this to be happening.  I wanted my life back with Rick and my boys.  I didn't want to accept this.

'There is no one to thank," Norma said when I called her later. "Just put it toward your mortgage and don't worry."  You have enough to take care of.  "Norma, I can't; it's too much.  I feel terrible." I told her.  "Jane, you would do the same for anyone.  Please, I'm not telling you; it's just the way it's going to be," she dismissed me again.  "Let me know what else I can do for you." It was no use; I said goodbye and hung up the phone.

Thank you, God.   I will pay it back to others in need.  I am so blessed.

Saturday, January 29, 2011

So Far Away...

Rick was “gone” after two days of chemo and the pain meds.  He was a shell of the man he was before the nightmare began. He would talk with me but it wasn't him.  This was Chemo Rick. It was very hard to deal with this person who was with me; I didn't know him.  I had no idea how long he would be with me.

Is this Rick forever?  Where is my husband?  Will he ever be back?  He’s inside and he will come back; I have to believe it.

I chose to believe he was in there under all the coldness.  For ten days he was in the hospital being poked, prodded, scanned, x-rayed, zapped by radiation and poisoned by chemo.  He had gone away to somewhere else.

At home, our house had been turned upside down in order to make room for our adjusted life.  Rick had seen this all before when his dad was ill.  His dad went to the hospital and returned to the family room and the hospital bed.  His father died in his hospital bed.

Someone got fast food for dinner.  It was Ash Wednesday, the beginning of Lent.  We all sat around the kitchen table eating hamburgers.  It was my mother that remembered first.  She burst out with, “We’re not supposed to eat meat today.  It’s Ash Wednesday!  What was I thinking?”   My brother in-law, the priest looked at all of us and said in a low voice, “Well, I wasn’t going to say anything!”  We roared with laughter.  Everything was a mess and quite frankly, I wasn’t worried about eating meat.  I was more afraid I would be giving up Rick for Lent.

Jack and Michael were out of sorts.  They could tell that everything had changed.  I could see right away this was going to be very hard on them.  The boys were a threat to Rick’s immune system.  They really couldn’t have close contact with him and they needed to be washing their hands constantly.  I am sure that it felt like rejection to be restrained from loving-on their dad. He was their buddy and pal and loved to snuggle them.  Rick's happy-go-lucky spirit had changed.  He was gone.

Rick was in a wheelchair, slumped over with his head down.  He was in constant pain.  We had been given Dilaudid, morphine patches  and  Roxanol, liquid morphine to put under his tongue for break-through pain.  The chemo had started its side effects; he tasted metal, had no appetite and basically wanted to die.

My parents left the evening we came home.  They wanted to get a jump on getting home and would get a hotel room in Pennsylvania.  It was okay; I would handle it.  Rick’s brothers would be back in the morning to help with taking him to the hospital for radiation.

We got up the next morning and I had the boys rolling toward going off to day care and school.  I was getting breakfast when I heard the usual bickering between the boys.  Rick exploded yelling at Jack, my oldest to stop.  It was over the top.  Rick came into the kitchen in the wheelchair and I looked at him very seriously and said, “You had better stop right now.  I don’t care if you’re in a wheelchair or not;  If you yell at him again like that, I’ll knock you on your ass!  They have enough to deal with right now; this is an adjustment for them too.”

I know he’s in there somewhere.  Please come back to me, Rick.

I decided right then that I had to do something.  I got on the phone to the oncology nurse coordinator and told her that Rick was depressed and he needed to be on meds right away.  I explained the incident with the boys; she said she would call Dr. Death and get him to call something in.

I knew that this would be a bone of contention with Rick.  He never liked taking any medications before this; now he was on 16 different medications during the day.  Each time I took out the medications and got them ready for him.  He would look at me with a glare and say,” What am I taking?  What is this one?  Why this one”?  It was literally enough to make me crazy.  There were six different times during the day that he was taking pills and each time, I got the same inquisition.

Our secretary was a beautiful antique piece of furniture that my Aunt Kathleen had given me.  It had three shelves inside the glass doors.  This quickly became known as “the pharmacy.”  The three shelves were filled with all Rick’s meds, Kytril, Dilaudid, Morphine, Roxanol, Dexemethasone, Prilosec, Elavil, Ativan, Coumadin,  Colace, Senokot  and a lovely cocktail to prevent sores in his mouth from the chemo.  The pharmacy would be added to with each visit to the doctor weekly.

Steve and Paul came to the house around 8 o’clock to take over for me so that I could take the boys off.  Steve arrived first and then Paul.  I felt great relief just to see their faces.  I could not face this alone and they were there.

The ambulance arrived at 10 a.m. and this crew looked a lot more capable than the crashers from the day before.  There was an older gentleman, who was the in charge of them who had a friendly manner about him.  Rick liked him instantly.  At least I felt like he was in capable hands.

I had to go to school to check in; my principal had given the okay to come and go so I took advantage of the time to make an appearance.  The guys went off to the hospital for radiation and would meet me back at the house.  It was going to be a long day.

Friday, January 28, 2011

Fragile, Handle With Care

One of the things that happened right away when Rick got sick was that I took over the finances.  We were climbing our way out of debt but still had a way to go.  My sister in law offered to lend us money to pay down some bills.  With several of Rick’s siblings in the hospital, we made a huddle and decided the best thing to do with the rest was to get a consolidation loan.  This would free up more money to put toward the mortgage.

I had no idea what the future would bring. All of this strategic planning was invaluable to me; I was so anxious about the thought of losing our home.  My brother in-law brought us the paperwork; we signed it and sent it off before leaving the hospital.

I felt like a traitor making these plans about our finances but the reality of the situation was daunting.  It felt selfish to be making contingency plans but I had two young boys that I also needed to take care of.  I didn't have the luxury of pretending that he might not die.  I felt the crushing weight of the anxiety growing inside me.

My father died in a car accident; my mother was widowed with four children at 29.  This made a huge impression on me growing up.  Rick and I bought life insurance two weeks after we were married.    We would be prepared for whatever life threw at us.  When our first son was born, we added to it.  If Rick were to die I would be okay, financially.  This was no consolation; I wanted my husband to live.

When the EMTs arrived on the day we were to go home, they were glum-looking characters.  I explained to them the state of Rick’s bones and the need to be careful with him. They gave me that "We've heard it all before, Ma'am." look, as if to dismiss me.

It was quite a feat to figure out where to put the stretcher and how to transfer him; evidently, this was not the usual patient transport.  They moved him to the stretcher and then began maneuvering it to exit the room.   All of a sudden the stretcher collapsed and Rick went crashing down, still strapped in and on the stretcher but Rick started writhing in pain.


I saw RED!  However, I had to remain calm and mentioned again that he was fragile and that a jolt really could fracture or break his bones.  They were apologetic but you know, I WANTED to  murder one of them.

My husband, Rick was a shy man who did not like bringing a lot of attention to him. There is nothing inconspicuous about being rolled out of a hospital by EMTs.  As a matter of fact, there were many people staring at him.  Rick was dying of cancer but the death-stare he was giving me indicated he might be dying of embarrassment. 

They made their way down to the ambulance which had its flashing lights on.  I could feel the death-stare as they lifted him into the ambulance.  Someone took my car and I rode with Rick to our house.  The Toll Road was a war zone; there was construction everywhere; they were adding a third lane.  It was winter and the road was riddled with potholes.  The ambulance bounced and jostled Rick. He just stared out the back window and groaned all the way.

We arrived in our neighborhood and they put the flashing lights on as they backed the ambulance into our driveway.  My parents were at the door waiting for us.  A few of my neighbors came out to wave and were happy to see Rick back home.  This only served to humiliate Rick even more.

The hospital bed had been delivered and set up.  My mother had bought lovely new linens and made it look inviting.  The EMTs were much more careful in transferring him from the stretcher this time.  I guess they wanted to live to see tomorrow.  We were home, finally, but the future was looking pretty grim.

Thursday, January 27, 2011

Full Steam, Ahead!

When you’re the caretaker, you take care of someone else; nobody takes care of you. It’s hard to think about yourself when you are looking at someone who is suffering.  Everything about you seems insignificant.

When Dr. Death started talking about Rick going home, I felt great relief on one hand, scared to death on the other.  A parade of specialists had made their way through his room.  The orthopedic surgeon wanted to cut out the lesions and put Rick in a rehabilitation center for weeks. This didn’t seem like a good idea, sort of like going from bad to worse.

Dr. Johnson, the doctor of radiology oncology felt that radiation would be less invasive.  It would heal the bone eventually.  Dr. Johnson was a great cheerleader; we needed a cheerleader, someone who could make us believe there was a chance. Dr. Johnson had that wonderful bedside manner.  He was just what the doctor ordered.

So…Dr. Death said that Rick could go home and return to the hospital daily for radiation.  Here is the catch; Rick couldn’t walk and was now in a wheelchair.  Okay, a miracle will occur every day and he will appear here? I don’t think so.

The oncology nurse coordinator paid me a visit before Rick went home.  She gave us a gazillion appointments, with Dr. Death, with the hospital for radiation, with the center for his next chemo infusion in three weeks.  Next, she explained how fragile Rick’s body was.  Rick’s bones were brittle and a fall could cause him to have a break that could require surgery.  His immune system was already weak; surgery would not be a good next step. Basically, she made it sound like a dire situation.

I am a “Mulhern”.  Mulhern is my maiden name.  I am a fighter.  I survived growing up in a family of eight children.  I have six tough brothers and a feisty older sister. We are all hot-heads and do NOT take things lying down!  Something inside my head exploded with the frustration and the pressure of the moment.  “There is no way that I am taking him home in a car after you just explained that.  I will not move him. You had better figure out a way to get him home and get him back.  If he falls, I will hold you personally responsible. You had better make arrangements for him because he is not moving.”

Mrs. Roszel, your insurance will not pay for his transportation back and forth.”  “Oh, they’ll pay!  I will sue every single one of you if something happens to him. I come from a family of lawyers who will have nothing better to do than sue the pants off of all of you if something happens to my husband. Do not tell me that a fall could potentially kill him and expect me to take him home.  You had better make something happen.”

Well, something did happen.  She arranged for an ambulance with life support to take him home and an ambulance to deliver him wherever he needed to be in the next few weeks.  Isn’t it just amazing what can happen WHEN YOU GO NUTS in a hospital?

They would also be delivering a hospital bed, bedside commode, a wheelchair and medical supplies to our home.  The problem was we had no room in our home. So, my dear neighbor, Teresa came over and started to take things over to her house.  Rick’s brother and wife came and took away more things and brought us a single bed to put in the den so I could sleep next to the hospital bed. Another friend from my school came to my house and loaded up her van with even more things. 

My parents would stay until we came home and then leave the next day.  Rick wanted me dead; he did not want to be taken home in an ambulance. He had been in the hospital for ten days.  Ten days that seemed like a lifetime to me.  I didn’t want to go home either.  We were suspended in the animation of the hospital, going home and changing our life would make it all too real.

I had a gnawing pain in my side for days.  I couldn’t eat and felt nauseous 24/7.  Onward, full steam ahead! This was not about me.  I was the caretaker and nobody takes care of the caretaker.

Wednesday, January 26, 2011

The Elephant in the Room

Cancer is a strong word; it makes people feel uncomfortable.  I suppose because the word connotes malignancy, mortality, and death.  It felt as if everyone, including Rick and me, was skating around the word, death.   Yes, we know that each of us will die but most people do not have an idea of when.  Rick was 43 and he didn’t feel it was his time to think about it.

So…nobody talked about the ELEPHANT in the room, except when Rick wasn’t there.  One day he was in the restroom and a relative whispered to me, “He’s in denial.”  I said, “I know, if that’s what it takes to get him through the day, I’m fine with that.” 

I had no idea what it felt like to be diagnosed with terminal cancer.  I was happy with Rick swimming in denial.  I was having a hard enough time dealing with being the wife of the cancer patient.

Another relative wanted to know if the cancer had been staged yet?  I didn’t even know what that meant.  I was just trying to get through the day.  I think in their minds, if it was stage 1, we could do the happy dance.  I just wasn’t sure if they were thinking about if it was stage 3.  I didn’t want to know.  I would leave that to the Dr. Death. I was doing my best to try to take care of him.

At home, the boys were confused; they loved my parents but we weren’t there.  My mom called to let me know that the dishwasher had flooded three-quarters of our house.  Serenity, now!  I told her I would handle it. 

I called my insurance agent and explained my situation.  He told me he would take care of it and he did.  He sent a restoration company out to clean it up.  My poor parents had three blowers going in the house day and night.  We lived in a tiny, three bedroom ranch house.  Believe me, it was cramped before they lifted the carpets and brought in the fans.

“Jane, we’re going to need to leave soon,” my mother told me one day when I spoke to her on the phone from the hospital.  Honestly, I was speechless. “Okay, Mom, I’ll figure something out.  They said he’ll be coming home in a few days.  Can you stay until Rick comes home?”  “I think we can,” she replied.

How will I be able to work and take care of him?  How will I be able to take care of the boys?  Will I be able to make the mortgage, pay the bills, and keep my job?  I could have pulled every hair out of my head in frustration.  Okay God, you’re in control because I just can’t do all of this.

When it rains…it pours!

Tuesday, January 25, 2011

Taking Care of Business

Taking care of my boys and taking care of my husband was an impossible situation.  When I wasn't at the hospital, I was running back to be with them.  They were like vacuums for my attention and they only had me for a bit here and there. Thank goodness for my mother and father who were with them.

The oncology ward is a place of family independence.  There are some seriously ill people in there with six patients to each nurse.  Families are encouraged to get food or snacks for the patient from the handy dandy kitchen, bathe the patient with handy dandy bath packs that can be micro-waved and get anything else to make the loved-one more comfortable . We quickly learned that the more we could do to help out the nurse, the better it would be for Rick.

The hospital is an eerie place to be at night, glowing rooms with TV sounds emerging; beeping, clicking, buzzing, hushed voices, whirring cart wheels.  It's like a city that's still awake but put in low gear, still moving, a slower pace.  Radiation in the middle of the night, wheeled in, zapped, wheeled out.  Vitals check, LIGHTS, pshh, pshh, pshh, hisssssss, crunch, crunch.  "Can I get you anything before I go? Goodnight."
One night that I stayed with Rick, he woke me up.  He was thrashing around and talking to himself.  I quickly ran around to the side of the bed.  He was tearing everything out of him, tape, IV lines, catheter; he was going crazy.  "Rick, I'm here.  It's me." I said in a soothing voice.  "Where am I?" he said as he looked around the room. “The hospital, remember, Fairfax Hospital?"  I whispered and pressed the button for the nurse.  Luckily she arrive soon after and set things straight.  I helped him back into the bed.

"I thought I was in a hotel.   I couldn't figure out where I was." he said as his eyes closed again.  He mumbled, “You're with me, Janie. You won’t leave?”  I’m here," I said. “Everything’s alright.”  Everything wasn’t alright but there was nothing to fix it.  I couldn’t sleep, my eyes wide open.

How did we get here?  Will it ever end? I can’t face him dying.  I don’t want him to die!  I don’t want to be alone.  I don’t want to be a single mother.  I can’t do this. I don’t want to do this!

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

…………………….and I drifted off to sleep.

Monday, January 24, 2011

No Regrets

If he dies, I will die.  God doesn’t give you more than you take.  God, I think I hit my limit.  Jane, this is life and with life is also death.  This is what I have dreaded all my life.  I can’t do this.  I don’t want to do this.
Heeeeeeeeeellllllllllllllllllllllllooooooooooooooo, Jane!  This is Ricky and you will do whatever you have to. You can do this.  You will do this; you will have no regrets. I didn’t want to watch my husband die.  I would care for him and never wonder if I could have done more.  I would be there for him.

My mother was that one who instilled the “no regrets” attitude in me and for this I am grateful. When I was little, my mother would get all eight of us up and movin’ as she used to call it.  We lived in a creaky old farm house in Upstate NY.  I could hear her coming up the stairs and would hide under the covers. “Good morning, Boils!” she would sing to my brothers, Jimmy and Tom, in the next room.  “Good morning, Goils!  Time to get up!” she would sing to Patty, my older sister and me.

It was a sin to botch up her schedule.  Everything worked like a well-oiled machine.  In the bathroom, down to eat, up to wash, uniforms on, down to grab a lunch and book bag but not out the door.  My mother always insisted that we say good-bye, get a kiss, and say I love you.  She would watch us from the front window, the curtains on either side of her face, blowing kisses.

“You never know which day will be your last. You never want to live with regrets,” she told me many times.  My mom was widowed at 29, the mother of four under six years old.  “There was a day that your dad didn’t come home. I always want you to know I love you.”

I did have some regrets.  As I sat in the hospital room, watching Rick sleep, I kept remembering the times I said, “I hate my life.” These were words I had spoken, not to Rick, not to anyone in particular.  These were the selfish words spoken like a teenager, thinking something was better than my world.  I would have given anything to go back in time and take those words from my mouth or my mind, wherever I spoke them. I knew how rich my life was and how I loved my life and how I didn’t want it to change. I love my life.  I love Rick and I want him here, God.  Please don’t take him from me.

Each day took a toll on Rick.  The chemo, the radiation and the drugs were beating him down… 

Sunday, January 23, 2011

A Priest Walks Into a ...

My mother told me I fell asleep sitting up in a wing chair in the living room.  I had arrived back from the hospital sometime late the night before.  I was giving them the update when my eyes closed and I drifted off to sleep.

The next morning I was up and at ‘em and out the door with the boys to drop them before I made my way back to Rick.  I drove down the highway to the Toll Road and thought and thought and cried and cried and cried.  The car and the shower were two places where no one could hear me cry.  I felt as if my soul was opening and my feelings were endlessly bleeding out of me.  It was a river of pain, grief and despair.   A panicked voice in my head would repeat, "I don’t want it. I don’t want it. I don’t want it.” 

At times, I would hold my breath and make myself turn red like a frustrated toddler trying to change or force something to be different that never was going to be.  Inside, I screamed NOOOOOOOOOOO!

Okay, Jersey Wall.  Yes, I see you and I know you’re there but you don’t get me today.  I moaned in pain as I drove just looking ahead; my heart was breaking.

When I arrived at the hospital Steve and Rick were there.  At the same time there was a commotion and a troop of nurses and doctors in scrubs headed into the room.  Steve left to get a shower and said he would be back.

“We’re here to do the bone marrow biopsy, Mr. Roszel.  Mrs. Roszel, you may wait in the lounge.” The orders came from one of the nurses.  The lounge was just across the hall from Rick’s room.  When I sat down I picked up a magazine and for the first time realized that my glasses only had one lens.  I got down on the floor on my hands and knees and started looking for it.  This is not what I needed in a crisis, lost glasses.  I didn’t have time for fooling around with getting a new pair.

“What did you lose?” said a voice behind me.  An elderly priest walked in.  “My eyeglass lens,” I replied.  “I just realized it was gone”.  The priest got down on the floor and helped me look under each of the chairs and sofas.  We came up empty-handed.  “Perhaps it’s in my husband’s room.” I said.  “Thank you for looking.”  I put out my hand to shake his. “I’m Jane Roszel.” I said.  “I’m Father McDaniel; I’m here to see your husband, as a matter of fact.” the priest said as he shook my hand.  Oh, I said.  You’re from St. James; my mother in law told me you might stop in  It's so nice of you to come.”

At this point, one of the nurses interrupted and told us we could go back to the room.  Rick looked more beat-up than when I left him.  It seemed a futile act to do the biopsy since they had his blood and scans and were already treating him for bone cancer.

The Grim Reaper spoke to me for a few minutes in the hall.  “It will confirm that it’s multiple myeloma.  It is very rare in patients as young as your husband.”  Yippee, Skippy! 

Rick’s family had been pushing me to ask Dr. Death about his prognosis.  Do I really want to hear the words?  What difference would it make to know?  Rick’s experience will be Rick’s experience, six months, eight months, a year?  I don’t want a NUMBER; I want my husband!  It won’t change anything at all.  I didn’t ask him anything.  I just stared at the “talking head” of  Dr. Death as he rattled on.

Statistically, most people diagnosed with multiple myeloma are over sixty, black, male, blue-collar workers.  A nurse had told me the day before that four male patients in their forties had been admitted in the past two weeks which was unheard of.  I knew this must have been interesting to them but we were not thinking it was so special to be a part of the anomaly. 

I introduced Father McDaniel to Rick when I returned and told Rick about my lens.  I started to look on the floor.  The poor priest was back down on his hands and knees searching for the lens.  “Please don’t!” I said. “I can find it.” “No trouble at all,” he waved me off.  There we were, searching every nook and cranny. I needed the glasses to drive and I just knew the lens had to be on the floor.   

Just then, the phone rang and I got up to answer it. The priest began to chat to with Rick. “Jane, did you lose the lens to your glasses?  Your father found it here, next to the rocking chair.” “Yes”, I laughed, “Thanks for letting me know; it’s amazing I could see at all.”  “I think you might be a little stressed, honey.” she said.  Ya Think?  “Thanks, Mom.  I’ll call you later.” I said before hanging up.
I had driven 26 miles and never even noticed that anything was wrong with my vision.  I glanced at the clock on the wall; it was only 10:15 a.m.  It was going to be a very long day.

Saturday, January 22, 2011

It’s Definitely Who You Know

They took Rick down to surgery and we went down to the lobby where all the evening "next of kin" waited for the doctors to come from surgery with the status report.  Steve, Suzy, Rick’s mom and Paul were there with me waiting for him.  It was a dismal sentiment that filled the air. 

We chatted about how much pain he was in, how this was nerve-racking and anything we could think of to pass the time.  Since he had been in the hospital Rick had been tested, scanned, radiated and poisoned with chemo on a daily basis.  He was looking pale and bloated and had that far-away look from all the medications.  The chemo had killed his appetite and everything he ate tasted like metal.  Oh, the joys of cancer!

Across the lobby a small doctor in purple scrubs emerged and I went to see him.  As I walked to him, he could see how upset I was and he said, “He’s okay.  It all came out fine.”he said as he hugged me.  I told him that it all happened so quickly and that Rick was is in so much pain. “Why isn’t he in an orthopedic bed?” he asked. I told him, “They talked about it on the first day he was here and then they said that they didn’t have any spare ones and that they were working on it.”  I looked at him and I said,” So you’re saying I should ask them again?”  He smiled, “No Jane, I’m telling you, I’ll take care of it.  Hang in there.  I’ll check on him tomorrow”.  I thanked him and walked back to Rick’s family.

“What happened?” they said looking at me strangely.   He talked to you for so long.  “Everything’s fine.” I said.  “Oh thank God!” they shouted clearly relieved.  Steve said, “We saw that the doctor hugged you and we thought Rick died!  You gave us a heart attack.”  “Oh, oh, I’m so sorry!  It was Dr. Hassan; I know him. He’s treated me before.” I explained and we all began to laugh.

We made our way back up to 9 West to Rick’s private room.  As we rounded the corner, we could see that someone was at his door delivering his new orthopedic bed. This bed had a hand pull above that he could grip to get out of bed and a new mattress to boot.  I guess it does helps to have friends in high places.

Thursday, January 20, 2011

Fancy Meeting You Here

The next day a pompous, round doctor showed up in the room in the morning.  "Mr. Roszel, I'll be doing your surgery this evening.  It should be routine. I will be placing a port in an artery in your chest to make it easier for you to receive chemo. I need you to sign the consent."  Rick stared at him blankly.

Why is it that I am invisible?  What part of "My husband is not on the planet Earth." doesn't he get?

"I'm Mrs. Roszel.  He's quite drugged up and won't remember that you were here in five minutes".  I got a dirty look and he continued to talk to Rick.  I let him go on.  

There's no sense rockin' the boat if he'll be the one with the knife.

Later that day, a small, handsome man in purple scrubs walked into the room.  There was something familiar about him but I couldn't place him.  "I know you." he said with his two hands out at his side.  Then it hit me! "Intimately," I said.  He cocked his head to the side with a puzzled look.

This was Dr. Hassan; I had seen him when I was nine months pregnant and suffering from hemorrhoids.  I was an enormous, desperate woman.  A male nurse and Dr. Hassan had performed a minor surgery to remove 5 blood clots that were causing me excruciating pain. You have to know how much pain I was in; the thought of two men working on a beached whale was not my idea of a good time.

In the middle of the procedure the two of them burst out laughing.  I couldn't imagine what could be so funny. "You two better not be laughing at my butt!" I said in a gruff voice. "Oh, Mrs. Roszel the doctor's stomach growled: he hasn't had lunch yet.  It wasn't you. We're so sorry."  They continued to laugh.

Dr. Hassan came in the hospital room and gave me a hug and told me that he would be doing Rick's surgery.  "But another doctor came in."  I told him.  "No, he's sick; I'll be doing it." siad Dr. Hassan looking at me.  Rick was sleeping.  I told him how drugged up he was.  "Don't worry about it.  I'll take good care of him."  he told me.  "It will be okay." "I'll meet you in the lobby following the surgery and let you know how it went.  Hang in there." he said.

It's odd how one man's presence can knock all the sticks down and another, just with his tenderness and understanding, can lay them all straight, at least for a little while.

Wednesday, January 19, 2011

Angel of the Night

Many people asked me, "Aren’t you mad at God?"  I really wasn’t. They asked, “Don’t you ever think, why me?"  I'd say, “No, actually I think, why not me?” We weren’t promised the easy life, just life with all its ups and downs.

I always thought that I had control of my life.  The reality of life is that we have no control.  When something like this happens, it feels as if life is out of control. Surreal is the only word to describe it. I felt like I was in an episode of the “Twilight Zone”.  I was alone walking in a world that didn’t seem to get that everything was wrong. My husband is dying and nobody seems to care.  Why doesn’t the world stop?  Why does everything continue? DON'T YOU KNOW MY HUSBAND’S DYING!!!  

The first night that Rick received his chemo treatment, I was with him.  We were both frightened. A Philippine nurse came in with the bag of chemo IV with the poison in it.  It was a lovely setup.  I was not particularly thrilled to see the poisonous/hazardous labels all over the bag.  Okay, poison will save my husband? There didn’t seem to be logic in that.  

The nurse was very pleasant and explained how the infusion would happen and what Rick could expect.  It was about 10 p.m. and the lights in the room had been turned down and she busily got all the paraphernalia ready.  In a soft voice, she explained that she was a Christian and part of a nurses’ prayer group.  Each time she hooked up a patient, she silently prayed for the healing of the patient.  She told Rick that the group would continue to pray for him each time they met. 

As she hung the bag, she began her prayer, silently and we could hear the clicks and drips and the beeps on the machine.  The fear flowed out of me. In the horror of our life, here was an angel.  I don't remember her name but I do remember the calmness that filled my heart while she was there.  I recall her kindness, soft touch and gentle manner.  Rick and I were soothed by her.  God was with us, even in this nightmare. 

The Hole in the Ceiling

I remember my mom describing my father's calling hours to me when I was younger. "Everyone came to see, Jimmy.  I know that going can be difficult for people but I found it so uplifting.  I needed to hear how wonderful he was.  I needed to hear about his kindness, humor, and love.  At a time when I had nothing, I could cling to the words people gave me.  Each person who came helped to ease my pain," she explained.

This will be a good thing, I thought.  Yes, you're trying to convince yourself of that, Jane.

I decided it would be a good idea to sit down and chat with Jack about what would be happening when we got to the church.  “Jack, Daddy will be in a casket.  Remember, Aunt Kathleen was in one when went to her funeral.  Dad will be in the casket and the top will be open.”  I explained.  I wanted him to know what to expect.  “Mom, I’m a little worried about it,” he said.  I told him, Jackie, I will be right there with you.  Uncle Steve, Grandma, Grandpa, Grammy and I will be right there with you.  It may seem scary in the beginning but he’s our dad.  We need to see him.”  “Okay, Mom,” he said.  We’ll be going first in a limousine and arrive before anyone else.  We’ll go in and see him and say a prayer.  I bet it won’t even feel weird after that.  I gave him a hug and sent off to get ready.  “Love you, Babes.” I called as he went into his room.

There were loads of people at my house when Steve arrived.  He was going to bring Jack and me and my parents would meet us at the church.  My church was a modern church with the altar in the center and three areas of seats around it.  The lights weren’t on when we entered the church.  The funeral director was there and chatted with Steve.  The casket was at the front and to the left of the altar.  It was strange to see it there; it looked out of place in the familiar surroundings of the church we visited weekly for many years.

I took Jack by the hand and said, “Ready?”  He said, “Yes, Mom,” and we walked up to see Rick.  He looked the same as he had for the past few weeks, puffy, pallid and sick.  “Oh Mom, I’m okay,” Jack said.  We said a prayer together and then went to look at the collage that Jack and Suzy had put together that was in vestibule of the church.  They were grand.  There were pictures of Rick at all ages and many pictures of the boys with Rick.  Jack was proud as everyone stood looking at the photos. 

Karen and Paul and family walked in and Jack walked over to Matt.  They had been best buddies since they were born.  Karen and I were seven weeks apart when we were pregnant.  We looked like Twiddle-Dee and Twiddle Dum when  we were together. The boys walked up to the casket to take a look at Rick together.  When they finished they went back to the pictures and were talking with their cousins.  People started to arrive and we formed a receiving line at the front of the church.  I lost track of him for awhile after that.

I can’t tell you that I remember everyone who came but when they started coming, it didn’t stop.  Many of my friends from school were there.  They looked odd in their “teacher gear” walking in.  I was so happy to see all of them.  It warmed my heart to feel their support.  A short little nun appeared before me and I was so shocked.  It was my principal, Sr.Karl Ann, from St. Philip’s where Steve and I had been.  Her smile melted my heart.  She was now superintendant of elementary schools.

My best friend from my childhood drove down from Rochester, NY to be with me.  She had even offered to come and spend a week with me to help out when Rick was sick.

Mary (bridesmaid), Terri and Kathy, all from Cortland came.  My friends, Lana (bridesmaid) and her husband Dick Riley were there. Students from St. Philip’s and their parents even came.

Many people were friends of Rick’s siblings, some I knew but others I had heard about.  Rick’s friends and employers came.  I was bowled over by how many people walked through those doors. Many people had a tale or two tell about Rick. I loved hearing the din of people talking and laughing about Rick.

At the end of the two hours, I searched for Steve and said, “I can’t do anymore. Get me out of here.”  He just started to make the transition and told people we would be back in two hours.  I was out of there.  Steve drove me to Karen’s and Paul’s house where my school had provided a dinner for my family.  It was overwhelming once again to receive the generosity of people.

I don’t think I could eat anything.  I was still feeling that nauseous pain in my stomach again.  We weren’t there long before it was time to leave again for the church.  Steve drove me back.  Jack ran off to be with his cousins.  They had discovered the coffee pot in one of the rooms that the church had provided.  They thought they were drinking coffee with caffeine and were acting like goof balls. The coffee was decaf, of course, and they were full of pounds of sugar they dumped in their cups. It was nice to see Jack laughing and carrying on for a change.

The night was a blur of people coming and going.  Several of my friends saw me but didn’t come up to see me.  I knew it was because of their issues with the death.  Remember, I was the one who had avoided dead bodies at all costs.  I could see the signs and know.  One friend had been with her dad at age eight when he died of a heart attack with her at the park.  I knew when I saw her weeping that none of that had to do with me; she was fighting her own demons.

It was grueling to see people for 4 hours. As soon as my watch indicated overtime, I found Steve and told him that I couldn’t do anymore.  He started the closing prayers and that was the end of it.  I was dying to go home and just have a cup of tea.  I had made it through the first leg of the journey.  I could see the finish line.

Tuesday, January 18, 2011

Pick a Number Between One and Ten

Rick was still in much pain so they called the pain management team to come and assess him.  Now if you've never had the pleasure of being in that much pain in a hospital, it goes like this:  "Richard, on a scale of one to ten, where would you say that your pain is today?"  The kicker here is that although he was in tremendous pain, he was also on narcotics that blasted him to La La Land.  The medical professional who deals in drugs should know that when you talk to someone that strung out, you're not going to get a straight answer.  "Three," he replied.

For the love of God and all that is holy...I wanted to scream at my dear, husband but that wouldn't do.  "Ah", I interrupted, "this is the worst pain he has ever experienced in his life."  "And you are?" she said as if she had just noticed me sitting there.  "I'm the wife." "Mr. Roszel, is it okay to speak with your wife?"  No, why don't you talk to him that will get you far. Rick nodded his permission.

Multiple Myeloma is cancer of the bone marrow that causes lesions to form inside the bone. Imagine the bones under all that pressure; this is where the pain comes from. I'm thinking the woman is not dumb; she can see what kind of excruciating pain he's in, and the Dilaudid they were pumping into him was not even touching it. "His pain level is a ten." I said. "Well, would you agree with that Mr. Roszel?" she asked. "Yes," he replied.

I learned a lot about pain while Rick was sick.  It is like a monster that needs to be tamed.  You punch it down bit by bit until it reaches a point where it can be tolerated.  The monster is sneaky and tries to show its head and attack unnoticed.  I would gain a whole bag of tricks for taming that monster in a very short time.  The key to the taming was looking for the signs in Ricky to recognize when it was sneaking up.

There was a  pattern with Rick that began to emerge.  If he didn't admit to horror, then it wasn't real.  I think going to the hospital was admitting that there was seriousness to the situation.  If he said that the pain wasn't that bad, then it wasn't. I would have to read his pain, ask the questions and suffer the backlash from him. It wasn't fun but it was what I signed up for.  For better or worse, in sickness and in health... I was in for the long haul.

Monday, January 17, 2011

Nine West

I picked up Michael at Miss Doreen's and Jack was at home when we got there.  It's funny that the picture is clear in my head of that day.  Tell Jack.  I took him outside to the bench in front of our house.  How many times had we sat there since he was two waiting for his dad to arrive home from work?  I needed to focus on being calm and sounding like a loving mother, not the scared woman within.

"You know Dad is in the hospital and he's sick, really sick?" I started.  "He actually has cancer, bone cancer." "No, not my dad." he began to cry and collapsed into me."  Here was my baby; twelve years old having to face something he shouldn't for many years to come.  "Jack, this is not the end of the world.  The good thing is that they have found it. They will try to do everything possible to make him well. You know lots of people with cancer.  Grandpa was diagnosed with cancer before you were born.  Grandma was diagnosed before Michael was born" I explained. He looked at me with his big blue eyes and said, "They did?"  "Lots of people have cancer.  We don't know all the details yet, and we're going to take it one step at a time."

"Will he be okay?" he asked. Here comes the tricky one. "Well, I don't know, Jack.  We'll have to pray and be strong and enjoy every day we have.  Jack, we never know how many days we have; think about Dermot".  He was our neighbor across the street that had died of a sudden heart attack and the only person Jack knew other than my aunt who died. "We're all going to die some day. We never really know what our future will bring; we have to hang in there." We sat on the bench for awhile, my arms around him.

I had to leave, yet again, to go to the hospital.  When I arrived, I discovered they had moved Rick to 9 West, the oncology ward.  Suzy and Rick's mom were there when I walked in, as well as Steve and Paul.  Suzy was telling me about how great the floor was and how they had everything here and the room looked like a hotel room.  Overload!  I shouted in my head. It wasn't her fault; I couldn't see the positive in any of this.  It looked to me like I was losing my husband.

Rick's nurse came in and introduced herself to me  She would be on several days and we would see her again. Mary was one of the first angels God sent to us. She had a gentle voice and a beautiful face and a way about her that made it seem like there was hope.

Steve, Paul, Karen and I made a pact that we would not leave him alone in the hospital again.  We spoke in hushed voices in the hall.  It was a deal. I needed to be with the boys that night so Steve would stay the night. There was a small pull-out sofa in his room for family to spend the night.

Chemo would start that night; radiation would start in the morning.  Next, he was ushered to an MRI, full body scans, blood work, surgery for a chemo port and a whole schmear of tests too numerous to mention.

No one gives you a manual for helping your husband  with terminal cancer.  The book list should include, How to Survive the Worst News of your Life, Caretakers Guide for Idiots, and Cancer Sucks; How to Deal with All the Abominable Events that Will Happen to You and Your Loved One.  People do not think about these things; they do not think these things will happen to them. Wham! It happened to me. Even if there was a manual I had no time to sit and read a book.

A woman from Life with Cancer arrived to give me the cursory pamphlets, websites and a lovely laminated card with "stress buster" phrases.  The pearl that she left me with was the suggestion to get a four inch, three-ringed binder, a calendar and a notebook.  These were my tools for waging war on this monster.  I found out soon enough that if you act like you don't know anything, doctors treat you like you don't know anything.  Act like you understand it all and they speak to you as an intelligent human being.

They hooked Rick up to all kinds of medications with a pump.  He was gone to La La Land, which by all indications from the night before was a better place for him to be.  Steve and I sat quietly chatting while the beeping echoed in the room.  He was so overwhelmed; this was his baby brother.  He was a priest and he would take the time he needed to be there.  What could they to do, fire him?

It was a beautiful view from the ninth floor.  It was easy to look out and think.  I'm not here; this is not happening to us.  I could see the lights twinkling, the stars and the haze of light from all over Northern Virginia; it was dazzling.  The loud roar from a helicopter landing on the other side of the building brought me back quickly to the reality that was mine.

Off I went back home to kiss my sleeping boys goodnight.  Oh, there's that jersey wall calling to me again, inviting me to take the easy way out.  Keep on the straight and narrow path, Jane.  Jack and Michael need you; you have to be strong. God grant me the serenity

Sunday, January 16, 2011

Meeting the Grim Reaper

We were home and Rick was a ghost of himself, experiencing the pain, the shock and fear of the day.  My parents were on their way from New York to help out.  In the meantime, a home health nurse arrived at our door to go through another long process of forms, medical history and minutia.  She finally left around 10 p.m.  I helped Rick into bed.  He was shaky, pale and in horrendous pain.

He did go to sleep but was really having trouble breathing.  It seemed that every breath was excruciating for him.  I was worried.  It was at about that time that my mind became the safe place to talk.  I didn't feel comfortable expressing my worries to Rick.  He didn't want to talk about anything; he just wanted it all to go away.

Ten thousand thoughts were going through my brain at once.  What if he dies?  What if he lives? What if I can't support us?  Will we lose our house?  What will become of the boys?  Somewhere inside came the voice of my prayer... God grant me the serenity to accept the things I cannot change, to change the things I can, and the wisdom to know the difference.  This would become my mantra for a very long time.

We left the urgent care facility with some pretty heavy-duty pain killers.  Rick was still in pain.  None of it seemed to touch the pain. I called the doctor back at the Falls Church Center.  She said that she could only admit him to the hospital for pain management.  He was adamant; he was not going.

By three o'clock in the morning, I couldn't stand it any more;  I thought he would be dead by morning.  I called her back; she told me to take him to the hospital that she would arrange for it. Rick was so angry with me.  He didn't want to go to the hospital.  "Please Jane, don't take me, please!" He didn't want to make this real. I was panicking; I had to bring him.

My sister-in-law, Karen was there in ten minutes to drive us; Paul stayed with the kids.  As we were helping him out the front door on crutches, my parents arrived.  I could see the shock in their faces as they looked at my sweet husband.  There was something about seeing my own parents reacting to the situation that brought the gravity of it all slamming into my head.

We were off down the road to the hospital.  The night was a blur...I had to leave him to go back to the boys.  All I could think of was that they would wake up to my parents and freak out.  Karen dropped me off and I dropped into an empty bed, set the alarm and closed my eyes to the nightmare I was in until I woke to the alarm.

The boys were aware that something was up; something was different. It was Monday morning and I got them going and took them off to school and the babysitter's and then drove to the hospital.  When I arrived there was a gaggle of family all standing in the room.  Rick gave me the "death stare" when I walked in the room.  "Don't ever leave me again." he said.  His arms were covered in bruises; each area was where they tried to draw blood. "I can't believe you left me here."

Dr. Aloisious Passan walked in the room.  He was an Indian man not imposing in stature but surly in demeanor.  In his defense, he just walked into a room with about 10 relatives of a man to whom he would deliver dire news.  He examined Rick in a dispassionate manner and began to explain to him what Multiple Myeloma was and the next step of having a bone marrow biopsy.  His face was solemn as he told Rick that he would be moved to 9 West, the oncology ward and placed in a private room because his white blood cell count was high and his immune system was compromised. Exit, Dr. Death.

My Rick was a quiet man but had a grand sense of humor.  His family knew that his sharp wit would come at unsuspected moments.  As we all stood around his bed, crying and contemplating the news, Rick looked at all of us in the room and said in a solemn voice, "There goes the Grim Reaper."  We all burst out laughing so hard that we couldn't stop once we had started.  There was Ricky to set the moment right.

All those who would be "rocks" for us in the coming weeks were there in the room.  His brothers, Paul and Stephen, Karen, my brother Danny and his fiance, Chris.  I sat with them and cried with them and hugged them, all the while thinking about my babies at home.

I had to leave him again.  Jack would be home and all I could think was that I needed to tell him that his father had cancer before one of his cousins told him.  Rick was okay with me leaving because his family was there and his mom and sister were on their way to the hospital.

I drove home on the Beltway and headed for the Toll Rd.  I don't want to do this.  The concrete jersey wall was looking very inviting to me as I drove.  Turn the wheel and you won't have to face it. I was on my way to my sons and what choice did I have?  They needed me and I couldn't take the easy way out.

Saturday, January 15, 2011

Where to Begin....

We had been married for 14 years, loved each other more than life.  Life was a struggle, money, house, kids, jobs but we were very happy.  Our life changed the day Rick walked up the driveway to the babysitter's house.  He was carrying Michael (3) and slipped on the ice.  He didn't actually fall; he wrenched his leg, felt pain in his groin.  It wasn't a big deal or so we thought.

Rick told me about the slip but didn't make much of it.  We were both experiencing the aches and pains that come with being over 40.  Things don't heal as fast.  The gray hairs keep coming and those little creases are called wrinkles.

A few days later, Rick was limping quite a bit.  I even called him "Hop Along Cassidy."  In a week, he was using crutches to walk and went to the urgent care facility where they took x-rays that were later lost.  In another week, the man who was never sick, never missed work, had a 103 fever and was begging me to come home from work and take him to the doctor.

We went to the doctor who had just examined him the day before.  The day before it was nothing; the day before they told him to rest and stay off the leg.  Today, it was pneumonia and x-rays that finally showed up that revealed  lesions in his femur and hip.  Today was very serious with talk of oncologists, orthopedic surgeons and full body scans and appointments all over Northern Virginia.  Today our life changed forever.

The funny thing about the appointment was they failed to mention "the C-word."  They would leave that for someone else.  Rick was in a lot of pain and  of course, was reeling from all the commotion over his condition.  We somehow managed to go to sleep that night.

The phone rang at 7:05 a.m. The nurse on the other end had an urgency and an edge  in her voice.  "The blood work has come back and you need to get your husband in here as soon as possible!"  There is so much that can be read in tone.  My anxiety went through the ceiling.  I turned and looked at Rick and said, "They want you to come in right away.  Something's wrong. Something's very wrong."

It was Valentine's Day that the Grim Reaper told us that it was bone cancer,  multiple myeloma to be exact but only a bone marrow biopsy would confirm that.   Rick's calcium levels were sky high.  They needed to pump him full of IV fluids to help his kidneys which were almost failing. We spent more than 12 hours there and then went home with our hearts and our heads full of fear.

Friday, January 14, 2011

The Hole in the Ceiling

I was sitting in the shrink's last week on my usual day at my usual hour, telling him, yet another story about my family.  He was laughing so hard that tears were falling from his face when he said, "You have to write a book and that has to be the name, The Hole in the Ceiling." I'm not up to a book but tonight I decided to blog.

I am the 4th of 8. I married the 5th of 8, who died suddenly of cancer at 43 making me a widow with two young boys at 40, I remarried at 44 became the wicked stepmother of two, and of course that's just a part of the story.

Don't get me wrong, I'm living happily ever after.  I just have so many stories to tell, knowing where to begin is the challenge.  I frequently tell the shrink that my life is worse than a cheap novel, no one could make up this stuff; it just happens to me.

I may as well start with the shrink.  Dr. T or as I refer to him, "The Great Tishone" is the best present I have ever given myself.  Who else would listen to me on a weekly basis?  I started seeing him when I became extremely depressed after my husband died, when I became the "weeping widow."  I was aware that I was depressed.   Guess what?  Death is depressing.  Grief is depressing.  However, I had a four year old and a 12 year old and I had to pull myself together.  I could not completely fall apart so I got the name of the shrink that everyone at my school used.

Can you imagine how boring it would be to sit and listen to a weeping widow week after week after week?  I could.  I really felt sorry for the guy.  Dr. T. has allergies and when he takes an antihistamine, he cannot keep his eyes open.  The poor man would sit in the most uncomfortable chair in the room to try to keep awake.  One day he actually fell asleep.  To be honest, I couldn't be upset with him; I was boring him to death.  I started bringing him coffee from then on, so at least he had something to focus on besides me.

I started my sessions not knowing what to talk about.  It was awful to have to tell the story of the most devastating thing that ever happened to me.  I would get a panicky feeling in my chest and my head would be flooded with questions I didn't have the answers to. How do I go on?  I didn't plan for this.  This wasn't part of the plan. What is my plan?  I don't have a plan. Talking with Dr. T. allowed me to let some of it out.  The more I spoke about my loss, the easier it became.

Dr. T. did a lot of listening. He listened and then dropped a few pearls of wisdom.  The one that stuck was, "When people go through horrible things and can still see positives from the experience, those are the people who will make it."  I decided right then and there that was the one I was sticking with.

Shortly after Rick died, I decided that the best revenge against Death was living a Great life.  I meant it too.  I refused to let death take my joy, take my optimism, take me; I was going to fight back.  It was a long, hard road to find me and when I found me, I was a new Jane.