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Barney's Tale

While these events were happening, I had the most recent events on top, to make it easier for people who were checking in for an update.  Now that the document is basically done, I've put things back in chronological order.

Dad found a lump in the side of his neck about a finger's width behind his jawbone on the left side. He can feel it when his head turns. He thinks it may be related to some recent dental work.
Dad decides he needs to see a doctor about his lump. Dr. Christoff examined it and decided to have it removed to perform a biopsy.
Dad had surgery to remove the tumor and perform a biopsy. The doctors thought it was not malignant (no cancer). They got a margin of safety around the lump and thought they got it all, but to be on the safe side, they would go ahead with the biopsy.
The tests reported that the lump was cancerous. The doctors wanted to go back in immediately to take out the lymph nodes, the salivary gland, and other tissue in the area. When the surgery was over, they again said they had a margin of safety and that they thought they got it all. They've prescribed Radiation Therapy to try to stop it - traditional Chemotherapy isn't effective against this kind of cancer. He'll be in for tests every month for the next three years, and quarterly for another two. If nothing shows up during that time it probably never will.
Dad started radiation therapy, and the doctors gave the cancer a name: Parotid Mucoepidermoid Carcinoma. That basically means cancer of the parotid salivary glands (the ones behind your jaw). It's not in his lymph nodes - yet. The whole family is worried, especially since Dad's mother died of lung and liver cancer.
After thirty-three doses of high-level radiation, Dad's had all the radiation therapy he can ever have.
The monthly test showed a mass, possibly a recurrence. He had CT scans and MRI's to prove the mass. About this time, the left side of his face starts to droop like he's had a stroke. The Dr. said he thought the tumor was pressing against his facial nerve, causing the droop. Mom calls him "droopy dog". The doctors tried a variety of steroids to reduce the droop, with no effect. Dr. Christoff referred him to Dr. Lavertu at the University Hospitals of Cleveland.
Preparing for surgery, Mom and Dad learn about the options for post-surgical treatment. Two recently developed approaches are available. One involves implanted radioactive seeds during surgery, the other uses tiny tubes to feed radioactive material directly onto the site of the tumor. The doctors select the implanted seeds.
A third surgery, this time radical excavation, at UHC. The radioactive seeds couldn't be obtained in time for surgery, so they selected the implanted tubes. Dad came out of surgery with nine long "quills" sticking out in a line behind his ear. He started the week of treatment a few days later. Twice a day for six days, a machine fed "rosary beads" of radiation into the tubes for a few seconds.  We have a picture of Pop at UHC before surgery.
The cancer is back, pushing through the skin, with a ferocity we haven't seen before. The doctors said there is no known conventional treatment left. They recommended clinical research studies and Dad was turned over to Dr. Makkar, UHC Clinical Research Department.
Mom and Dad discussed the available options with Dr. Makkar. The best candidate seemed to be Rebeccamiacin, a form of Chemotherapy administered directly through the heart. Dad had outpatient surgery to install a port in his chest - a tube running from his heart to just under his skin. With or without treatment, the doctors project that Dad has only three to nine months. Dad says they don't know what they're talking about - he has no intention of dying around grandson Stephen's birthday in November or the holidays in December.
Mom takes a medical leave-of-absence for the rest of the school year. Dad starts his treatment of Rebeccamiacin. Dad gets a week of intense treatments, then goes home for two weeks. He has to save all his urine as part of the study. The first time around, his second week "off", he gets the flu, so they delayed his second round by a week.
After the first round of treatment, the doctors running the study decide Dad shouldn't continue because the treatment is ineffective. Mom and Dad disagree, and convince the doctors to let him go a second round, as they had initially told him they would. Mom and Dad lived at Hope Lodge for the week of treatment. The second treatment didn't do anything to change the doctor's opinion, and Dad was out of the program. A second program, Oxy104 was available, so Dad put his name on the list. The doctor's say he should come to the top of the list some time in June.
While waiting for his turn with Oxy104, the doctors suggest that Dad get some surgery to fix the droop near his eye. The doctor referred never called back to arrange the surgery.
Dad's been on Tylenol III with Codeine and Extra Strength Tylenol since he first started feeling pain, but it's not cutting the pain anymore. We think his body has built up a tolerance. The doctor switched him to Ibuprofen at regular intervals plus liquid Tylenol. During the same call, Mom and Dad asked about the Oxy104 program. The doctor said it might not be until August. Until then, the cancer will be allowed to run its course. Apparently, the patients on Oxy104 are doing better than expected, which is great for them, but no help for Dad. The doctor offered to let him take traditional Chemotherapy, but the best we could hope for is a 5-10% effectiveness. Dad's not sure it's worth the discomfort of Chemotherapy to slow down the cancer by only 10%.
I added this page to my website. Before this entry all dates are approximate. The timeline is pretty sketchy at the moment. I'll dig through my old e-mail and flesh it out as best I can.
Dad hasn't had anything to eat or drink in two days because he can't swallow.  Mom rushed him to UHC, where he was admitted.  They started giving him glucose and water to rehydrate him and give him some nourishment.  We thought he would be getting a feeding tube right away, but they didn't get it in until Tuesday.  They switched him from Ibuprofen to Morphine patches, with liquid supplements as needed.
Dad came home with his feeding tube and a pump.  Doctor Makkar wants him to start out at 25cc's per hour of food, stepping up by 25 every 12 hours until he gets to 100cc's.  If he can sustain that level, he can be fed with a syringe instead of the pump.
A bit of a scare.  Dad was taking in food at 75 cc's when he made us shut off the feeding pump because he felt full and nauseous.  Turns out he was, um, "bound up".   Mom and Dad got to explore all the wonderful technology for getting your intestines moving again.  The hospice nurse also ordered him a pump to help clear out his throat, since he can't cough or swallow to clear it himself.  Dad started over at 25 cc's.
We held a graduation party for Christopher.  Dad put in an appearance, but went home after the pain became too much.  Mom said it was almost like a pre-wake, because most of the family showed up to pay their last respects to Dad.
My parents came out to Ohio from California to visit for a couple of days.  Our folks all became friends during our wedding.  They stayed at the house for two or three nights.  Even though we've kept them informed of all the details, I think the visit was an eye-opener, as it usually is when people first see and smell the cancer.

I've debated whether to give a graphic description of his cancer.  I've decided that it's important to give you the full effect.  If you're at all queasy, you may want to skip the rest of this entry.  The cancer has pushed through his skin in large caps that look like scabs, but aren't completely dry.  The scabs build up until they get too heavy and fall off, and then he bleeds profusely for a while.  Every time he moves his head, the side of his head flexes and a yellow-gray fluid mixed with blood oozes from all the cracks.  Where the caps have had the longest to grow, there isn't even any skin left between them.  It's almost like his head is pushing these caps out like play-dough.  The entire left side of his face sags terribly, and the left side of his lips have swollen as if they were stung by angry hornets.  Fortunately, he can't feel anything in the middle of the affected area, but he does feel pain around the edges.

Mom and Dad requested a hospital bed for Dad.  Until now, Mom would sleep in their bed, Dad would sleep on the bed in the second bedroom, unless people came over, in which case Dad would sleep in their bed, Mom would sleep on the couch.  This got old real fast, because people (namely Trish and I, and Courtney and Christina) have been over just about every week.  The bed is in the living room so Dad can be involved when he becomes confined to bed, but he doesn't spend much time in it yet except at night.

Mom had a talk with the hospice nurse, who pointed out that since this cancer is on his head, it has a rich supply of blood to feed on.  That explains why there's so much blood and other fluids.  All his sheets and pillows are stained, and Mom's mop never gets dry from cleaning the floor where he's dripped.

Tricia and I just got back from another weekend in Ohio.  In the two weeks since we've seen him, it appears that the cancer has almost doubled in size.  The smell is strong enough that you can't sit within about five feet of him.  The caps are sticking out about an inch or two all around.  Dad was up several times every night, having trouble breathing.  He's got a "leak" from somewhere in his chest, so we think the cancer is moving into his lungs.  It looks like he's got pimples on his left cheekbone, but more likely it's the cancer about to break out in a new place.  He's got a lot of pain in his left eye and forehead, which could also be a bad sign.

Every time we leave, he hugs us a little bit longer.  He likes to come outside before we leave, but he can't stay out long, because the caps draw flies, and Mom's worried that they may nest or lay eggs.

He's asked Mom a number of times when "they" say he will die.  Nobody's told anybody anything since the "three to nine months" guess back in February.  I think he thinks he could be gone any day.  He may be right, but it's also very possible he could linger for months.

Dad's had a really rough week.  He's been bleeding worse than ever before, and some of Mom's worst nightmares have come true.  Towards the end of the week, the nurses had to come in daily for several hours a day.  Dad can hardly make it to the bathroom (ten steps away) and back anymore.  One time, he made it to the bathroom and fell asleep standing up.  Mom and Christopher had to stand in front and behind him and move his feet for him to get him back in the bed.  Hospice brought in a toilet-chair to set next to his hospital bed.
Jim had a really hard time breathing all day.  He was very loud and gurgly.  Hospice suggests seasickness patches, which have a side-effect of drying up your salivary glands, and also gives Mom a tranquilizer to give Dad to calm his restlessness.  Mom and Courtney were home with him and gave him both the tranquilizer and the patch.

Ten minutes later, Mom commented on how well the patch had quieted him down, then noticed his hands were curled up and blue at the fingertips.  Courtney checked for a pulse, listened to his chest, checked his breathing with a mirror under his nose - nothing.  They called a nurse to confirm it, and time of death was officially about 6 p.m. Ohio time.  He went very peacefully in his sleep.  We think the tranquilizer helped him to go with the flow of what was happening, instead of laboring against it.

Grandson Stephen was staying with us for the week.  We were just getting home from a company picnic, and were calling to see if it was OK for Stephen to see a particular movie.  When Trish got the news, we went straight home, made a lot of phone calls, packed quickly and got on the road after an hour or two.  We talked a lot with Stephen in the car, helping him understand.  We decided it's Stephen's job to tell all the grandkids in the future about "Pop", to make sure they know who he was and what he was like.

We arrived in Ohio about 2 in the morning to discover everyone was still awake.  We stayed up talking until about 4.
At Mom's request, we all made it to 8:30 church service, then got take-out chicken from the St. Paul's Festival in town, which is where we would be if circumstances were different.  Dad's family is Catholic, and we'd usually see them while we were there.  Mom's scheduled to meet with the funeral home at 2 today, along with whoever else comes along.  We're trying to decide whether Dad should wear his emerald green suit coat, a blue-green-white striped polo shirt, or his "Will Golf For Food" t-shirt in the casket.  Most people slept until the meeting - I was too busy typing, so I paid for it later.

First Baptist Norwalk has an upstairs sanctuary.  Dad was a big man, and with the weight of the coffin thrown in, the stairs would be quite a challenge.  There's an elevator, but it's not big enough for a casket.  Mom says that if Dad had asked to have his services in the church, she would have insisted, but since he didn't seem to care, we're having both the viewings and funeral at Kubach-Smith in Norwalk.  The viewings will be Tuesday, August 3 from 2-4 and 7-9, and the funeral will be Wednesday, August 4 at 1:30, performed by Rev. Dr. Paul Lamb, the pastor of Mom & Dad's church.

Tom, the director of the funeral home, helped us put together an obituary, a casket, and flower arrangements which not only honored his military career, but also went well with his favorite suit.  Those of us who weren't able to see him before they took away his body got a chance to see him.  The embalming process was finished, but he hadn't been made-up yet.  The tumors had shrunk to the point where many were sunken instead of projecting.  There was no swelling in his lips, no smell, and hardly even any droop.  Aside from the one tumor on his chin, he's quite presentable.  We give Tom a picture and permission to remove the tumors and replace them with mortician's wax.

As painful as it is to lose him, the consensus of the family is that Pop is in a much better place.  As one visitor pointed out, "This Christian thing is great for the one who dies, but it really sucks for the rest of us."  He told us a few weeks ago that the first two things he was going to do in heaven were to hug his mother (who also died of cancer), and hug Matthew, the son who died when he was nine hours old. We figure the next thing he does is find a golf course.

Family and friends have started to bring us food.  Even with nine people eating at the house on a regular basis, plus whoever's stopped by while we're eating, we're not sure if we'll be able to eat it all before something goes bad.  It's a good problem to have.

We went out to the cemetery with Mom to arrange for a plot.  Mom & Dad had hoped to move Matthew's remains to be with Mom and Dad's, but the superintendent said we probably wouldn't find much after 20 years.  Mom selected plots for Dad and herself near Baby Land, and just across the road from "Baptist Alley" where many of their friends are or will be buried.  Dick Parish, Dad's barber, offered to give him a last haircut.

Late in the evening, Trish, Beth, Christina and Mom went through old pictures to put together a collage of pictures showing Dad at his best.  I hope to borrow some pictures to add to this page.  The best picture, and the one they put in the middle of the arrangement, was of Pop just before his third surgery.  He's standing in a hospital robe, his face is sagging, but he's got a big, goofy grin.  That picture really sums up his attitude toward the cancer - he was thumbing his nose and laughing in its face.  We also put some of his personal items on a memory table.  I'm hoping to retype or scan as many of these as I can into another web page you can get to from here.
We had a private family viewing at around 9, so we could see how he looks and so Dad's brother Dale and sister Sandra could see him before the crowds.  Tom did an amazing job with Dad's face.  Unless you know where to look, you can hardly tell where the wax starts.  The picture we left showed just a little of Dad's droop, and Tom replicated it perfectly.  Trish says when Tom took off the tumors, he took 30 years off of Dad's face.

Pop was a very popular guy.  Everywhere he went, even when out of state, he always ran into people he knew.  We knew there would be a lot of people for the viewing, but even we were surprised.  The 2:00 viewing was so busy, we thought the evening viewing might not be so bad - boy were we wrong.  The line for Dad stretched out the door for about half the evening viewing.  Most people had to stand in line nearly an hour to get to Mom.  The afternoon viewing was more of a mob than a line - whenever someone saw an opening near Mom, they dashed in.  In the evening, the rest of the family figured out how to channel people from the guest book, past the memory table and pictures, over to Mom and then to Dad.  We felt so sorry for the other viewing going on in the next room.  We think they only had about 10 people show up all day.  By the end of the day, we had 204 lines in the guest book.  Factoring in the family, multiple people on a single line and those who chose not to sign it, we figure 250-300 people came to see Dad.

We were amazed at all the flowers, too.  Granny counted 36 arrangements or plants, some sent by people we didn't even recognize, but who Dad would know immediately.  Jeanie Helgeson, a friend of Mom's, sent a lighthouse blanket that sends Mom into tears every time she looks at it.

Part of the "package" from Kubach-Smith is a limousine with seats for seven.  With nine people in the immediate family, we couldn't make it work, so we turned it down.  We decided Dad would rather have his Blazer in the procession anyway, with our Saturn right behind it.  One of Dad's friends, a Captain with the Sheriff's office, offered to lead the procession in his squad car.
The funeral was an amazing tribute.  Tom, the funeral home director, said he'd never seen so many people or so many flowers.  Rev. Paul Lamb's message was long for a funeral at 45 minutes, but not a minute was wasted.  Courtney's mother-in-law played her keyboard, and a woman from the church read a beautiful poem she had written for Jim (I need to ask Mom for a copy so I can put it here).  As people got up to pay their last respects to Dad, instead of leaving the family alone as is traditional, they wanted to squeeze a hand, give a hug, offer consoling words all over again.  Tom was going to stop them, but Paul explained that this is typical for the Barnes family.  At Dale's request, we put his own lucky golf ball (painted like an 8-ball) into the casket before they closed it.  Courtney and Christopher were the first two pallbearers.

Barney was a crew chief on a C-130 in the Air Force, so Courtney requested an honor guard to perform military rituals at the cemetery.  The two airmen accompanied the casket, folded the flag and presented it to Mom.  Courtney's father-in-law read roll-call, which is when anybody who wasn't already crying lost it.  After visiting Matthew's site, we went to the church where some other families had prepared a meal.  Once again Barney broke a record - we told the lady who planned it all that we might have 50 people, but it was closer to 90.

The final count in the guest book was about 350 families, counting both viewings and the funeral, and eliminating duplicates.
We expected to feel a loss, to feel like there was a hole, to feel relief that he wasn't suffering.  What we didn't expect was the discomfort at meeting someone who hadn't heard yet and having to replay the whole story for them again.  I'm sure it's therapeutic, and an important part of the grieving process, but at times we just need to do something normal - to stop being the grieving family and just be the family.  The whole family (except Stephen, who went to Michigan with his other grandparents) went to dinner at Damon's in Sandusky, one of Dad's favorite places.  We wanted to do something normal, away from town where we wouldn't see anyone we knew.  It almost worked, but we're all stretched pretty thin after the week we've just had.  The two-hour wait for a table didn't help, but that's what we get for eating near Cedar Point on a summer weekend.
I drove halfway to Norwalk to meet Mom and Granny and Trish, who had been in Norwalk for two weeks helping Mom get ready for school (first day of class is August 30).  Mom's doing pretty well, but it still doesn't take much to make her get teary-eyed.  For example, she asked if I got my hair cut.  I said it had been a few weeks.  My last haircut had been with Dick, Dad's barber, the day after he cut Dad's hair for the viewing.  She's a strong woman who doesn't wear her heart on her sleeve, but she has a hard time hiding something like this.

Mom decided on her own to go back to school.  Just about everyone thinks it's a good idea - she lost her routine when she left work to take care of Dad, and she needs it back.  Besides, if a substitute took Mom's class for two or three weeks until she got everything sorted out, she would be worried she couldn't get the control back.  The substitute who finished Mom's class last year didn't have much control over the kids - Trish said they spent several hours getting spit-wads off the ceiling.  I hear she also owes her co-workers an apology for berating everyone for losing her three-hole-punch.  Trish found it at home that night - Dad must have brought it home once when he was there.

Mom and Trish went through some of Dad's stuff, donating clothes to charity.  There's much left to do - reading his will, choosing a headstone, settling all the insurance policies, disposing of all his Amway stuff, even filing taxes differently.  Mom knows she'll be dealing with this for a long time before she has any idea what "normal" means again.  Besides losing Dad, she's also dealing with empty-nest syndrome.  Christopher is the last child living at home with Mom.  She doesn't want him to delay his own life (college, career, military, whatever is right for him), but she isn't ready for an empty house, either.



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