Death

My dad died when I was 18 months old.  I have no memory of him.  We called him "Daddy up in Heaven" and still do to this day to distinguish him from my father, Jack.  My mother worked for the New York Telephone Company in New York City; she was an operator in the Chrysler Building.  Her family lived in Cliffside Park, NJ a short journey over the George Washington Bridge.  My dad's family was from Manhattan, actually Harlem. All four of my grandparents were Irish immigrants who came to the United States around the 20's.


My mother heard at work about a party at someone's apartment on Friday night and that there would be a bunch of Irish guys there.  She went with a few friends and sure enough, Irish guys.  One of them walked up to her.  He was tall, thin with brownish red hair, green eyes and a beautiful smile.  He started talking to her and finally asked her if she was free the next night.  My mom said, "No I'm not free. I'm going out with that guy over there."  She pointed to a really handsome guy across the room;  he had that Tyrone Power's look to him with dark eyebrows, dark eyes, dark eyelashes and the cutest dimple in his cheek. "Ah, that's my kid brother, Jimmy." he said.


Peggy and Jimmy were married not long after in 1951.  They moved to the Bronx, 282 Gunhill Rd,. not far from Jimmy's brother, Tommy and wife, Rose.  Jimmy's parents and two other brother's lived in the next building over. My parents had a three bedroom, fifth floor walk-up apartment and with four kids, they were busting at the seams. My crib was even set up in the hall way.


It was 1960; my dad, Jimmy worked for New York Central Railroad.  He had just received a promotion and was being transferred to Syracuse, New York.  He took the train up with a friend and then rented a car to try to locate a house to buy.  With four small children just under six, my mom was happy to stay home.


My mom told me she knew the minute she opened the door.  There were two police officers standing there to tell her the news.  She was blindsided.  "Not Jimmy, not my Jimmy!" He and his friend were going to a company party the night before.  They were on Thompson Rd. in Syracuse; it was dark, rainy and the road had a bad curve..  Jimmy lost control of the vehicle and  hit a tree.  He was killed instantly; his friend had a broken nose.

My grandfather took care of everything, the funeral, grave, gravestone and the burial.  He wanted to take care of us too.  My mom didn't want him to do that but what choice did she have?  My Uncle Jack was a bachelor of 30 when Jimmy died.  He had a good job and a car in New York City which was rare.  He was so overcome with grief; he wanted to help in any way he could.  My mom said that he came over to take us down to the park to play and on the weekends took us for drives in his car.

On a drive to the country one day, in Thornwood, NY, Jack's proposal came.  "You wouldn't want to marry me would you?"  "Yes," was my mother's reply.  They were married a few months later.  My grandparents wouldn't go to the wedding; they thought it was disgraceful.  My mom later told me, it was the most natural thing in the world.  They grieved together and helped each other emotionally and it blossomed into something more.

My mom always said she was the luckiest woman; she had two wonderful husbands.  She would sometimes joke with my friend, Mary Burnham about finding a man.  She'd say, "Mary, pray to to St. Anne; she got me two good husbands and she can get you a good one too.

I am the fourth of eight.  Three of my siblings are biologically-related and my other four brothers are my half brother/cousins; we are all Mulherns. This was the story we grew up with, a story of death and loss.  It could have happened to anyone, but it didn't, it happened to us.

Abandoned

 I asked Steve to call our parish to have one of the priests come and visit Rick while he was sick.  We were both raised Catholic and this is what a person did.  Three weeks went by and we didn't hear back from them.  Finally, someone called to make an appointment with us for the following day.

Getting Rick ready was no small feat.  He was 6’1” and weighed about 210.  It was a long, arduous process that required about an hour of time.  We really couldn’t go fast with anything. When Rick was ready he sat in the living room in his recliner and waited and waited and waited and waited for the priest to come.  After a half hour of waiting past his appointment, we gave up and moved him back into the family room.

Do I have to beg them to come and see him? What is the deal? Where are the faithful?  How am I supposed to have faith at one of the most trying times of my life when I am being abandoned?

In the meantime, Karen's and Paul's parish sent a Eucharistic Minister to give him communion and to pray with him.  They were lovely.  However, this was not our parish supporting us.  Each week at mass at their church Rick would be remembered in the prayer for the sick.  Back at our parish, five weeks went by; I asked Steve to call again.  We finally heard from one of the priests; he would come and give Rick communion the next day.

Father Joe came by one afternoon and seemed very uncomfortable.  He was the associate pastor at the church.  I left the two of them in the living room talking about the Redskins after he had given us communion.  Actually, he only talked about the Redskins; he never talked with Rick about his illness, death, making his peace with God, nothing.

I was raised Catholic, taught Catholic school and always participated in church.  This wasn't exactly what I envisioned for me or my husband.  I was so disappointed. I thought the Church would be there for us or at least reach out to us.  With each passing day, I felt as if the wind was let out my sails.  Our church had let us down.  It was bewildering.

The boys had settled down into a routine and seemed calmer in general.  Although we still had to be careful with germs and washing hands constantly, the boys could come closer to Rick and get their love.  Rick was set up in the den to watch TV which meant he could watch cartoons and other kids’ shows with the boys.  I was able to go back to school too. 

My principal asked the staff not to discuss Rick’s illness with me at my request. My emotions and nerves were raw and I couldn’t go through the details over and over again.  I needed to concentrate on getting through the day.  Everyone was very concerned for me but I didn’t have the energy for all their concern.  I was completely wiped out.

I had just ordered about $28,000 worth of books for the book room.  All of the books needed to be leveled, labeled, stamped and color-coded.  It was great timing for me; I could dive into the pile of books and get buried there.  Processing books is a mindless task and a mindless task was exactly what I needed to get through this.  When I was at school, I took care of books and read with children.  I am sure the tear stains can still be found on the books.

Game Day

The physical therapist gave Rick the go-ahead. He was now using the cane.  He was pretty unsteady in the beginning but was getting stronger every day.  Rick even let me walk him up and down our street about four houses to build up his stamina.

I became the nurse extraordinaire, giving him shots, flushing his chemo port and changing his dressing every few days.  Rick was becoming a little more accepting of the medication.  He no longer interrogated me on each dose.  Michael and Jack grew accustomed to this adjusted life.  I kept telling myself that I could continue as long as it took.

People around us continued to support us.  My brothers, Dan and Mike were there to help with whatever came up.  Chris, Dan’s fiancé was our drugstore connection as a pharmacist.  Rick’s family just came in and did what needed to be done.  We were truly blessed.

I called the Social Security Administration around the end of March to apply for disability benefits.  Talking to that office was like talking to a wall.  The representative first asked for Rick.  I warned her he was very out of it.  He gave his permission for me to speak on his behalf.  She gave me a date for a phone interview and told me what documents I would need to gather.  The phone interview was three weeks later.

She sent a huge stack of forms that needed to be filled out and returned with original documents, birth certificate, social security card, etc.  These would be returned to us after the office processed his claim. The paperwork was tedious and trying but I got on it and put it in the mail and waited for the phone appointment. 

When his appointment rolled around, I was sitting next to the phone waiting for it to ring.  Again, Ricky gave his permission for me to speak.  She had received all of the documents and was ready to submit them.  She couldn’t tell me when we might hear back.  I did find out that if he was awarded benefits, the soonest we would see a check would be around September.  It was frightening to think about but at least the ball was rolling.

Finally, NIH called us with a date for the bone-marrow transplant, May 11^th, a little more than two weeks away.  While I was happy to get started on the fight, I was also realistic about his chances.  This bone-marrow transplant would bring him close to death and hopefully, he would be able to fight his way back to us.  I was out of my head with worry.

On Saturday, two weeks before the big day, I brought Rick to the baseball game.   Karen and Paul had brought Jack over with Matt and they were already practicing when we arrived.  Michael Sean was with Karen and Paul in the bleachers. 

We parked in the gravel parking lot and looked at the boys warming up on the field.  My brother came over to carry the chairs.  Rick really didn’t want to be seen and I knew he was dealing with that demon but I got out of the car and came around to help him out.

He was extremely shaky but he got up and started walking with his cane around the outfield by the fence to the area next to the team bench.  It was slow-going and he was really getting winded.  Jack was smiling ear to ear; this is what he had waited a long time for.  His dad was here.  We cheered on the team.  Before the game was over, we started back to the car.  Rick was pretty worn out by then.  The rest of the family followed after the game.  Rick was so proud of Jack and of himself for making the journey.

No Dice

A woman from NIH (National Institute of Health) phoned me a day or two after the appointment.  She needed the names and addresses of all Rick’s siblings.  A kit would be sent to each sibling; it would contain a vial for the blood sample he/she would have drawn.  Most of his siblings lived in the area so it was pretty easy for them.  His two other brothers lived in Kansas and North Carolina.  Each sibling was so willing and hopeful that he would be a match. 

The results came back slowly.  It was exasperating to have to wait until they were all in.  About a week after this started the woman called back with the results.  I picked up the phone and she identified herself.  “I’m calling with some bad news, not one of Rick’s siblings matched his blood.”  I was floored!  I was completely speechless.  I had not seen this one coming.  I hung up and began to flip out in my head.

I can't believe this.  I can't believe this.  I don't want to believe this. Seven siblings and not one match!  You can’t take him from me, God.  I need him.  Please, please, please don’t take him from me!

I went in to tell Rick in the den.  We cried together.  This seemed like our last hope and it was gone.  Rick could still opt to have the autologous transplant done at NIH; it wasn’t as effective but it could extend his life.  We were rattled but we decided to get the show on the road.  I called NIH back and told them about our decision and they said they would be in touch with us with the details.

Each of Rick’s siblings was dumbfounded when they heard the news.  I remember Rita, his baby sister, crying and saying, “I really wanted it to be me.  I really thought that it would be me.”  It was the kind of thing where  they cried or they wanted to punch a wall in frustration. The irony was that each of Rick’s siblings matched someone else in the family, just not Rick.

I felt sick with worry. I did not want to walk this part of my life.  I didn't have a choice.  My face couldn’t show it.  I had to be the one who would hold onto hope for Rick.  In many ways, I felt he was taking his lead from me.  I couldn’t control it; I couldn’t control anything but I could put a smile on my face and help Rick to see it was worth it to hold onto hope.

Rick was very reluctant to be seen in public.  He went  in our backyard with the boys and me but didn’t want to be seen.  I tried to convince him that how he looked wasn't important.  I coaxed him out of the house one day while the boys were in school.  We took a ride in the car.  It was a beautiful spring day; flowers were starting to bloom and everything smelled fresh.   “Janie, go slowly, we don’t need to go fast.  I want to enjoy it all.  I don’t think I went through life slowly enough.  We don’t need to be in a hurry,” he said as we drove along.

“Rick you can’t give into this.  You have to fight it.  Why don’t you want to be seen?”  I said to him.  “The chemo, I look awful.  I can’t, Janie,” he replied.  “You are beautiful, Rick!  Do you think Jackie cares how you look?  He wants you at his game.  He wants you, Rick.  Don’t let this cancer take everything from you.  I know you want to go to Jack’s game.  As soon as you can use the cane, we’ll bring you over to see him,” I begged. Finally, he agreed.

This was big for Rick.  Jack would be so thrilled to have his dad see him play.  The first order of business was to get him a lawn chair that would give his back support.  Next, I needed to get Karen and Paul to help me pull this off.  Their next game was the following Saturday and Rick was going to go if I could clear it with Doug, the physical therapist.

Things were beginning to seem brighter to me already…

Decisions, Decisions, Decisions

Rick began the radiation treatments the next day.  Since it was his neck, they made a “cage” for his head.  This was to immobilize him during the treatment.  The first time round with radiation, they marked his body with permanent ink in order to have the right coordinates for the radiation beam.

These were better days for Rick.  He was making his way back to us again.  His personality would peep through.  He began using the walker and his spirits flew to the sky.  We could see a smile on his face more often and his kindness, warmth and jovial self were more evident.

Jack was playing baseball by this point in spring.  Karen and Paul would take him to practice with his cousin, Matt.  Rick would talk to Jack about his coach, practice and his games. He would give him the “father pep-talks” before leaving for the games.  This warmed my heart because this was the real Rick, I knew and loved.

Rick’s body was seeing some of the side effects of the drugs.  He had developed a steroid hump at the base of his neck and the steroids were also puffing up his face.  When you added those things to a total lack of hair, he was pretty self-conscious about being seen in public.

Johns Hopkins called us about setting up an appointment for Rick to see about their clinical trial. The date was set and we drove up with Steve.  They took Rick in to examine him and we waited in the waiting area.  This was the land of the diagnosed; we were sitting with people of all ages, some without hair, some with hair, some with those deep, dark circles surrounding their eyes, some were walking, some were being wheeled in.

Steve said, “You know this should have been me.  I would love all those alternative therapies.”  He had recently attended a support group for myeloma patients and their families.  He had a wealth of information on the subject now but knew Rick wouldn’t go for any of it.  “Yes, Steve, it should have been you.”  We laughed.

A little while later, they brought us back to Rick; then we moved into the conference room to meet with the doctor.  This was a woman who seemed deeply compassionate.  The doctor explained that in this clinical trial  the patient was given a total body irradiation; this was a one shot deal.  You can only receive that type of treatment once.  The next part of the treatment would be to do a bone marrow transplant from a sibling who would match Rick’s This would be followed by high dose chemo-therapy.

Total body irradiation before bone marrow or cord blood transplant

Radiation therapy is often part of the transplant preparative regimen — treatment used to prepare a patient for a bone marrow or cord blood transplant. Total body irradiation (TBI) gives a dose of radiation to the whole body. TBI can destroy cancer cells throughout the body. It also destroys the immune system so that it will not attack the donor's cells during the transplant.

TBI can reach cancer cells within scar tissue or other areas of the body that chemotherapy may not reach. However, the dose of radiation must be low enough that the body's healthy cells can recover. For this reason, TBI alone cannot be used to destroy large numbers of cancer cells. Instead, the transplant preparative regimen uses TBI along with high-dose chemotherapy. (Some preparative regimens use only chemotherapy and do not include TBI.)

http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Undrstnd_Treat_Opt/Lrn_Other_Treatment/Radiation/index.html retrieved 2/5/2011

Overwhelming!  I don’t want to do this at all.  God make it go back.  Please make it go back to when we didn’t have these issues.  I don’t want to lose him.

This was our first option to consider for treatment.  Next, we were off to NIH (The National Institute of Health) to hear about their clinical trial.  We drove up on another day.  It was pretty much the same type of experience.  The protocol here called for Rick to have the bone marrow transplant with a sibling donor match.  It did not call for the total body irradiation which meant that if Rick’s body rejected the bone marrow of one sibling; he could use his own bone marrow on a subsequent try.

A transplant that uses another person’s bone marrow is called an allogenic transplant.  This type is preferable because the patient is receiving marrow that doesn’t contain cancerous cells.  The other type is an autologous transplant which uses the patient’s own marrow.  It is taken from the body and irradiated and then returned to the body.  A high dose of chemo therapy is used to wipe out remaining cancer cells. Since it is the patient’s own marrow, there is a greater chance that the cancer will recur.

The third option was to continue with the VAD (Vincristine Adriamyicin with Dexamethosone) treatment that he was currently on.  There was a limit to how long he could be on this type of chemo.  The Adriamyicin does damage to the heart and the Dexamethosone staves off the swelling but we could already see that Rick was feeling the pain on the third day and it was getting worse on each four day cycle.

We decided that NIH would be the best choice.  There were really no reasonable choices but we had to pick something.  The first step was for each sibling to have his blood drawn and sent to see if anyone matched Rick  With seven siblings, we were pretty optimistic.

Clarity of the Situation

While Rick was receiving his second infusion of chemo, I went off to learn how to stick a needle into an orange; training for Rick’s arm.  Rick’s red blood cell count was low which was causing him anemia and therefore, he had little energy.  Rick needed an injection of Procrit once a week.  I practiced with a needle on the orange and then on Rick.  This is one of those burning shots.  It has to be given in the fat under one’s bicep.  I had to pull on his fat and get a pinch of skin and inject it into the pinch of skin.  It was very painful for both of us.  I would cry each time I had to give it to him.

I took the opportunity to speak to the nurse about the pain he was having in the back of his neck.  She alerted Dr. Death.  Dr. Death sent him for an MRI in a facility a block from the hospital.  This would be next week’s outing.

While we were there, Rick also received another dose of Aridia which helped to coat the lesions in his bones, preventing more bone loss.  He was started on the chemo and then they moved the bag to a pouch on his waist with a pump so it would continue at home. 

Rick was also given Dexamethasone which is an oral steroid that causes the shrinking of the bone marrow; it helps in alleviating some of the pain.  His schedule for chemo was four days on and then three weeks later return to the doctor for the next infusion.  The Dexamethasone was four days on and four days off.

I kept reminding Rick this infusion wouldn’t be as bad as the time before.  The nurses knew my gig immediately and came around to saying things my way.  Rick was feeling the effects of the chemo before we got in the ambulance, metal mouth and nausea.  By that evening, he was “gone again.”  Chemo Rick was back.  I could tolerate the attitude and mean-spirit a little better this time around, feeling fully certain that it was the chemo and not Rick.

People began to visit him but to be honest, it was hard to deal with.  We were in the middle of a crisis every day.  It was nice for Rick to have some people to talk with but it wore him out.  In addition, I think it is hard for a patient to accept visitors that they haven’t heard from in a long while.  A friend he hadn’t seen in perhaps five years came to visit.  It was nice talking sports with him; however, Rick said later, “Where has he been all these years?  Do you only show up when you think someone is dying?”  I guess there was no good answers to these questions.  It just is; what it is.

Doug continued to come for physical therapy and was pleased with Rick’s progress.  He was working hard at it each day and Doug was pleased to see the difference. A rhythm emerged in our day.  I would get Rick his breakfast and help him get cleaned and dressed.  Then I was off to the boys’ rooms to get them going and I would run them to school and babysitter.  I would return and usually Paul had come and was chatting with Rick over the paper with coffee.   I would leave them and go off to school.

Our next major outing was the following week; Rick had made it through the worst of chemo round 2.  The ambulance was bringing us for the MRI next to the hospital.  We waited until they called us.  I went into help him get into the gown and then went back to wait.  When Rick came out in the wheelchair after the tests, he was shaking his head from side to side, as in a big NO.  I waited until they wheeled him to me.  “They’re calling the hospital and want me to go back to radiation today to speak to Dr. Johnson,” he said with repugnance in his voice.  Here comes another sucker punch.

Off we went to our unscheduled visit to the Radiology Oncology dept. of Fairfax Hospital with our new MRI films for Rick.  We waited in the waiting area and were chatting with the nurses about how Rick was doing when Dr. Johnson came and invited us into his viewing room where there were many films set up on the wall.

Dr. Johnson explained that the radiologist at the imaging center was being extra cautious by sending us to the hospital.  He said he knew about the lesions and that was why he had ordered the radiation treatment in the first place.  He was very calm and showed us the films. 

This was the exact moment that I knew Rick would die.  His entire rib cage was riddled with holes.  No wonder it hurt to breathe.  He showed us the shots of his spine from the side.  We could see the large lesions that had caused the bone to push against the spinal cord.  There were holes up and down his spine and all over his skull.  I don’t think Rick realized what he was looking at but I could see the hopelessness of the situation.  Dr Johnson said that this was like looking through a microscope at the bone.  The x-rays only showed a blur of the area.  All I could think was his bones were disentegrating and there would be nothing left to hold him upright.  I want to scream and run away!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dr. Johnson decided on another round of radiation for Rick to help relieve the pain in his neck.  This would help the neck to heal.  Rick agreed and so there would be another adventure in radiology oncology.

Rick, you will be leaving me; it is only a matter of time. I want to run away from all this.  I don’t want you to die.  Please don’t leave me.  I don’t want to live without you.

A Fork in the Road

A great thing happened, a physical therapist was sent to our home two times a week for services.  The guy’s name was Doug; he was young, tall, built and had such a nice bedside manner. He obviously spent a lot of time at the gym.  Rick enjoyed his company and they would talk while he treated him. He started slowly with Rick which was good.  Doug left exercise sheets with Rick so that he could do them on the days Doug didn’t come.  Rick was excited to start doing the exercises.  He had a goal, something attainable, and it really lifted his spirits. Doug had told Rick that if he continued to the do the exercises and build muscle, he would be able to stop using the wheelchair and transition to a walker, then a cane.

Rick’s whole attitude had changed. I'm sure it was the anti-depressants too.  He had started his way back to me.  We talked a little about what was going on.   I tried to tell him that an altered way of life was better than no life at all.  He didn't seem too convinced.  It was hard to think about the possibilities because we had no idea about any of the treatments. He had an appointment with Dr. Death coming up to discuss “the plan.”

Each time we went to the radiation oncology department we were staring at pamphlets on advanced medical directives.  http://en.wikipedia.org/wiki/Advanced_Medical_Directive. They were everywhere. I didn’t want Rick to feel that I was making plans for his demise.  I was afraid I would hurt him by bringing it up. 

We had discussed the whole death thing in our marriage.  We had a joke between us.  If he was driving and forgot his seat belt, I might say something to him.  He would look up at me and say, “What do you care, Cha-ching!” It was just our way of jabbing at each other.  In other words, I would end up with the life insurance because he was being "pig-headed" and refused to put the seat belt on just because I brought it to his attention.  MEN!

We had also talked about what we would want for the other if one was to die. We had each said that we would want the other to be happy. We should remarry if we found the right person; neither of us should feel held back. We wanted our children to be safe and loved and those were the most important things of all.

It was so hard to talk with him now.  I felt as if talking about him dying would be entertaining the possibility.  It seemed a betrayal to me.  In my head at night, I could wrestle with the possibilities but with Rick, I needed to remain his cheerleader.  “Rick, you can do this.  I know you can.  It will be over soon.”  I had to be positive or I would drown in doubt and he would go down with me.  I couldn’t let cancer win him away from me.

I had started to research chemo and its effects on the body on the computer when things weren't as hectic.  I read somewhere about the power of suggestion, particularly with people going through their second infusion with chemo.  They suggested telling the the patient that the first infusion is the worst and that subsequent infusions will not be as bad.  I started telling Rick this as soon as I heard it.  I could take advantage of the power of suggestion.

We were a wreck on the day that ambulance showed up to bring us to the Falls Church Center to the Infusion Center.  We had an appointment with Dr. Death first; next, they would take his blood and then start him on the chemo.  Rick would wear the pump of poison for three days and then return to have it taken out of his port.

Dr. Death examined Rick and asked him some questions about his current state.  Dr. Death then brought up the possibilities for treatment.  He could receive experimental treatments at either Johns Hopkins in Baltimore, MD or the National Institute of Health in Bethesda, MD if he qualified for the protocol for a bone marrow transplant.  Each had a specific experimental protocol they were using or we might opt with staying with Dr. Death with a more traditional approach.  He was hesitant to go through all the details and said he would leave it to the doctors at each hospital.  Regardless of our decision, we would be supported by them for anything that could be done locally.

We asked Dr. Death what he would choose for someone in his family.  He looked very serious as he said, “There is a lot to be said for quality of life. Neither of these protocols will be like a magic wand.  I think I would advise a family member to stay here.”

What prepares you to have this conversation with anyone?  I have no idea.  We were overwhelmed.  Rick didn’t feel at 43 that he could just choose quality of life and know he would die.  It was an atrocious situation to be in.

The truth is that only 9% of those patients treated in clinical trials actually live.  We didn’t know that at the time but those numbers are staggering. So what should my dear, sweet husband choose when there wasn’t a good choice?  We asked ourselves that question over and over; there was no acceptable answer…

Don't Be Mean to Your Angel

Rick had been on narcotics/pain killers since he was in the hospital.  Narcotics can take their toll on your digestive system.  In the hospital they had started him on stool softeners and Senokot, a laxative.  Next, in the arsenal, were suppositories.  Stephen happened to be in the room when they were giving it to Rick.  Steve said it looked like a bullet.  He told me if he ever got to the bullet stage to please just "pull the plug."  He could not think about it.  What a whimp!  

When Rick left the hospital, it had been three days since he had seen any "action."  However, since he had been sent home, it was my problem.  I continued to give him the Senokot and Colace.  After five days I called the oncology nurse coordinator and let her know the situation.  She called in for some "LIQUID DYNAMITE" a.k.a. Latulose  It was a powerful laxative that was supposed to do the trick.

After 24 hours, I called her back and told her it was "no go."  She was astounded and  told me to up the dose and said that surely this would take care of the problem.  Two days went by at the higher dose and still nothing, until that night.

At about midnight it started: all hell broke loose; Rick was immobile and he needed the bedside commode.  He was still unstable.  He was back and forth between the bed and the commode.  Rick was sick all night; it was a brutal situation.  I was back and forth between the bathroom and the family room.  He was in agony.  I had to put on a surgical mask and gloves. I was crying; I felt like I was in my own nightmare.

Rick took one look at me and was furious.  Okay, it really was that bad, the kind of thing where I was wondering if I'm the next one getting sick.  I couldn't go back and forth without the mask.

Steve arrived at about 7:15 to take Rick to radiation and I met him at the door.  He could see in my face that something was up.  He walked in and took over.  I got on the phone to the nurse.  He was unable to stop and it was fluorescent green bile-like.  She was concerned about a blockage and dehydration.  She told me to have the ambulance take him to the emergency room instead of radiation.

Five minutes later Paul arrived at the door.  He walked in the den and saw Steve.  Steve stood up and did what any older brother would do; he handed the bucket to Paul and went to help me get the boys up and going.  Karen took them over to school and day care.  I was dropping from exhaustion, having spent the entire night up, but had to drag myself and Rick together to go down to Fairfax.

It was Steve's turn to take him to radiation so he came with me.  We spent hours in the emergency room.  The pumped him with IV fluids and sent him for an x-ray to see if he was impacted.  The good news was that he wasn't.  We spent about a total of four hours in the emergency room and then they sent him down to radiology oncology for his radiation treatment.  It was too much for me; I was really on the brink.  I sat in the waiting room crying while we waited for him to finish.  When he finally finished, we had to wait for another ambulance to come and get him.  We arrived back at the house at about 6 p.m.

Rick's mom was there with his sister, Suzy when we walked in the house.  Karen dropped off the boys and I started getting homework, baths and dinner finished while they spoke in the den.  When I had finished, I went into the den and lay down in the hospital bed while Grammy, Suzy and Rick chatted.  He was telling them about the day. He was pretty comatose and was slurring his speech.  I had just given him morphine when we returned from the trip.

Rick looked at his sister and mom and said, "She let me sit in the sh_t."  I was so shocked; I sat up.  He said it again.  "She let me sit in the sh_t. I was so flabbergasted I couldn't speak.  Tears were welling up in my eyes and I felt so betrayed.  If I could have given up right then, I would have run away. I sat there incredulous to his mean-spirit.
 
Remember, it's not your Ricky.  He's not in there right now.  

I looked at him and said in a quiet, gentle voice, "Rick, you should never be mean to your angel.  You should never be mean to your angel."  Suzy and his mom looked at me with empathetic eyes.  They could see he was killing a little part of me.
 
I know he loves me.  This isn’t really him; this is Chemo Rick.  Come back to me, Rick.  I need you.

Brotherly Love

I have six brothers and eight brother in-laws; I’m practically an expert on brothers. A brother’s love is very powerful; I think it has something to do with all that testosterone flying around.  One minute they’re pummeling each other to death; the next they’re hugging each other, remembering the good old days.  Perhaps it has to do with surviving their rough and tumble childhood together; they were wild hellions

The Roszel boys have a fierce love between them.  The family bond is intense.  My family is demonstrative.  Rick’s family is big on the feelings, not so much on the showing or talking about it without a few beers in them.  Every time my brother, Mike sees my brother in-law, Steve, Steve will give him a bear hug but he tells Mike, “no kissing”! One day, he startled Steve by kissing him and Steve has never really recovered from it. In our family, men show their feelings and brothers kiss brothers; we’re lovey-dovey. The Roszels are not.

Rick’s hair began falling out a few days after we came home from the hospital.  He was bald at 21 but losing all his hair to chemo was a different experience.  There was something so degrading about losing his hair to chemo.  First there were a few hairs on his pillowcase and then they started coming out in full force.  Chemo knows no mercy; it punches you in the gut and then demoralizes you further by taking every shred of hair on your body.  We shaved his head before it could take his dignity too.

When his brother, Paul came the next morning, he walked up the sidewalk carrying the Washington Post for Rick like he did every morning.  We looked up to see that Paul had shaved off all of his hair; he was completely bald.  “It’s a sign of my solidarity,” he said.  Rick smiled and started joking with him.  I was so moved and I knew how much it meant to Rick.

While all of this was happening around me, I was reminded again that we were all suffering through this.  Steve, Suzy, Peter, Paul, Bill, Rita, and Mark were facing losing their brother; Rick’s mom was facing losing her son; my son, Jack was subtly aware that he might lose his father.  My pain was just a small part of a huge circle of grief that was enveloping us.

Each day Steve, Paul and Karen would put a smile on and show up at our house to do whatever they could to help.  I could not have survived without their support. I didn’t feel as alone with them to talk to and confide in. I had a hug when I was losing it and a shoulder to cry on. They shared the burden and it lightened the load.

Rick loved seeing Paul walk up the steps each morning.  He would sit in the recliner near the front door with sun shining through the windows and wait for the highlight of his day.  It was his brother bringing him, not just the paper and not just the help he offered, it was the most precious gift; it was his brother, Paul bringing Rick his love.

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.