Remembering Our Son, Brother & Friend

Robert J. Meyerson

March 14, 1971 - February 20, 2003

Picture taken on November 8, 2002

By

Peter Meyerson, Lee Meyerson, and Charlie Meyerson

Copyright ©, 2003

Preface

We decided to put our thoughts down on paper to help us process our grief. This text is about a journey through time as well as a journey through the mind. We started writing this text as a way to express the grief we continue to feel because of the loss of our son, brother, and friend...Robert.

Robert died from a very aggressive form of cancer.

Robert (or Rob as he preferred to be called) was like a diamond with many-facets. Depending on which side of the diamond you were looking at, you saw a different part of his persona. We wanted to document not only the strength Rob showed during his five-month battle with cancer, but also the strength we received by being with him during those last few months. We also wanted a way to document the strength we gained from the wonderful people who helped us (and continue to help us) heal from this horrible experience.

Let me start by giving you a quick peek at a part of who Rob was. Rob was 31 when he died….just a few weeks short of his 32nd birthday. He graduated from the University of Wisconsin with a BS in Geology.

Rob tried to get into graduate school to become a Paleontologist. Unfortunately, his grades were not high enough to get him into graduate school. Knowing that he needed a job to support himself, Rob took a job in retail.

Even though he was unhappy in retail, he worked those types of jobs until he realized that he wanted to serve his God. He searched his soul and decided that he wanted to attend Seminary and become a minister in the United Methodist Church. He was well on his way to reaching his goal when he started experiencing backaches. Rob first thought the backaches were due to his old bed. He bought a new bed and the aches persisted, and got worse. And that was the start of Rob’s newest journey…a journey that began, at first, as a journey toward regaining his health through cure or remission, but quickly became a journey towards death. It was the beginning of a journey that included literally hundreds of people from around the United States. It included people who knew him well, and also included people who only knew his name.

The first few sections of this text deal with the five months leading to Rob’s death. It is important to tell this part of his story so that you have a background as to our actions after his death. It is a story that is hard to tell, but one that also helped us deal with the grief we felt from the time we knew he was going to die, to the present.

Keep in mind that we’re still grieving. If you are reading this text because of your grief, it is important to know that grief doesn’t really stop. It just changes. Grief becomes a way to think about our loved ones in a caring and respectful way.

Section One - He’s Coming Home

After Rob’s backache got so bad that he couldn’t stand it, he went to the Dr. Rob had experienced bladder infections in the past and though that might be the problem. The doctor had Rob go through two CAT Scans and a kidney biopsy. The biopsy showed that he had Stage IV Transitional Cell Carcinoma (TCA). Rob talked with the Dr. in Dayton, who suggested that Rob leave school and come home so that he could have the surgery and be supported by his family during surgery and recuperation. When all the arrangements had been made, we sent the following email to about ten people (family and close friends)…

October 11, 2002:

I wanted to let you know about some bad news we just got a few days ago. It actually goes back about four weeks ago when Rob called and said that he needed a new bed because his back hurt. He bought the new bed, and his back didn't get any better. He continued to have pain for about two more weeks. When the pain got so bad, he went into the Emergency Room at a hospital near school. Rob then went to his Dr., who put him through a variety of tests. They found (through the CAT scans) his right kidney was partially enlarged, so they ordered a kidney biopsy. On Monday, Rob called and said that he just got word from the Dr. that he has kidney cancer. Right now it looks like it is only in his right kidney. His only option is to have surgery so that they can remove the kidney. They believe the other one is working ok.

The doctor suggested that Rob might want to come back to MN to have the operation, so that he can be close to family during recovery. So...he is flying in tomorrow morning from Dayton. He has a Dr. appointment here tomorrow afternoon. Hopefully they can set up surgery for next week. It looks like he will be in the hospital for about 4 - 5 days, and then recuperating at our house for another three weeks. If all goes well, he'll be back in school in a month from when surgery occurs.

Isn’t that awful? Lee and I have our ups and downs, but right now we need to keep it together for Rob. We can collapse once surgery is finished.

That's about all we know at this time. We'll know more tomorrow after meeting with the Dr. Hopefully, they have found it in time and the cancer hasn't spread.

Little did we know what was in store for Rob and the rest of us.


Rob went through a lot of pain (and pain pills) over the next twelve days. He went into surgery and this is the email we sent:

October 23, 2002:

Robert's surgery went as scheduled today. My wife and I were given news that we had not expected. We were in the cafeteria at the hospital when a nurse came to tell us that the surgeon wanted to speak with us again before the surgery. We took our lunch to a conference room and met with him. He said the radiology report from last week indicated some spots in his right lung. An oncologist will meet with us after the pathology report comes back to plan the next step.

After the surgery (2+ hours) the surgeon came out to tell us what he found. (This is how we remember everything, but it may not be completely accurate.) The tumor had encased the right kidney and was attached to the muscle (probably what caused his intense pain), and there was a piece of the tumor that had encased the blood supply in and out of the kidney. The surgeon was able to remove the kidney, an adrenal gland and lymph nodes, but was not able to remove the piece surrounding the blood supply. So clips were placed on the boundaries of the cancer to mark the spot for possible radiation at a later date. They will have to wait and find out what type of cancer he has before deciding on the next step. It will be up to the oncologist to decide on the best approach.

My son does not know this yet. The surgeon will meet with him tomorrow to tell him what was found. He is too doped up to understand anything today.

Wish there was a better report. Hopefully the remaining cancer can be taken care of by radiation. Additional surgery is not an option.

Thanks for all your kind words over the past several days. They have really helped.

We, of course, were devastated with the news after surgery. Seeing him for the first time was very difficult. With all the tubes coming out of him. Rob had a rough first few days.

The next email we sent out encapsulates what went on:

October 26, 2002

Hello All,

We received the pathology report from the oncologist yesterday afternoon. The cancer is Stage IV. Chemo is the choice of therapy, not radiation as was originally thought.

It is recommended that the therapy begin in 2 weeks (after Rob has regained his strength).

We have some concerns about the chemo that need to be discussed with the urologist. The concerns are the side affects. Of course, one of them will be hair loss. But there is also a possibility of damage to bone marrow and to the other kidney. Yikes!

Yesterday afternoon was a difficult time for Robert. His hemoglobin dropped, so he received 2 units of blood. His temp remained at 102+ degrees. At one time it went over 104. His oxygen level dropped to below 86 percent so he wore a mask and the pressure was increased. We were all worried about losing him.

Today he seems much brighter. He will be doing breathing treatments during the day. His temp is down significantly and blood pressure is good.

He hasn’t eaten anything of any substance in 2 weeks. Jell-O and broth before surgery and a glucose drip since. He can have nothing by mouth as long as the chest tube is in. He woke up this morning dreaming of ice cream!!

Rob thinks he’s going home Tuesday. We’ll see.

On November 1, 2002, I was able to send out the following email…

Rob is finally getting better. Last Friday was a horrible day, but he literally survived many problems and is now on the mend. They have taken out his chest tube, nose tube, and his catheter. His remaining kidney seems to be doing well. They also took him off oxygen yesterday. His right lung is still a little congested, but it is improving. The Oncologist believes the congestion is partly due to the operation and partly due to the cancer they found in his right lung. The Urologist and his primary physician are going to take him off his IV and Morphine today. He will then go onto oral medication.

I know that Rob is a bit nervous about getting off the Morphine. As long as he has been able to keep ahead of the curve, he has not had to deal with a lot of pain. If all goes well, I believe that they will let him out of the hospital on Sunday (finally!!).

Rob continues to receive stacks of cards from friends and from people in the church he works with in Ohio. He got 18 cards last night. We haven't counted all of the cards, but I wouldn't be surprised if it reaches 100 before he goes home.

Rob is also on solid foods. He still doesn't have an appetite, but he ate a fairly good portion of last night's supper.

As far as the next steps, we have an appointment with the Oncologist next Friday. At that time, everything will be decided regarding date chemo will start and type of drugs they will use. I know that he will have another CAT Scan, and then many blood tests during chemo. Since these are going to be extremely strong drugs, he'll have another uphill battle to wage. Also, I am going to fly to Dayton on the 15th to get his car and a few other items (his computer, clothes and CD's).

Thanks again for all your support. 

December 07, 2002

Section Two - The Chemo Begins

We then got ready for the first round of chemo. I remember how hopeful we were…even though Rob was diagnosed with Stage IV cancer. Prior to his first chemo, Rob had another CAT Scan done. This is what I wrote after the scan:

I wanted to let you know what we heard today. As you know, Rob hasn't had any chemo yet. He had a CAT scan prior to going into the hospital just before his operation. At that time, the cancer was in his kidney and he had some cancer in his lungs. There was also some cancer that the surgeon had to leave in, since it surrounded a major blood supply. 

Rob completed another CAT scan last Friday. The news isn't good. He has more cancer in the lungs and also it has now spread to his liver. I am trying to contact his Oncologist today to see if we can get him started on chemo earlier than planned. As you can see, it's an aggressive cancer and we need to attack it early. I'll let you know more when I hear more.

After the CAT Scan, Rob then started chemo. Here is what Lee wrote to our friends:

Hello Family and Friends,

Pete and I went with Robert to the oncologist this morning. This doctor wanted to begin chemotherapy as soon as possible. He talked to us about the side affects and some drugs he would prescribe. There are anti-nausea drugs, drugs to prevent tingling in the fingers and toes and one to prevent swelling or retaining fluids.

Soon we went back to the chemotherapy room. It is a large room with 10 or so recliners and chairs for the person accompanying the patient. There are large windows for natural light. Nice view of trees.

The therapy that Rob had was Taxol and Carboplatin. Those were given one at a time. There were a couple of other IV bags of stuff -- anti-nausea and something for allergic reactions. Took 5 hours. He was watched carefully since this is his first time and we were inundated with reading material and verbal information. Overload.

Some kind soul donated 7 baseball hats for chemo patients. One for each day of the week.

Charlie came by at noon to take Pete to the airport. He's in Dayton picking up Rob's car and some more clothes. Pete will sleep there and then head out in the morning. A 12-hour drive.

Robert and I are relaxing tonight. I plan to get to bed early. He may not sleep much since he had Benydryl in one of the IV bags.and slept most of the afternoon.

Robert visualizes the chemo in the form of the National Guard in support of local enforcement driving the tumor out. Charlie suggested that Special Forces be called in as well.

We were all very hopeful at the beginning of chemo. However, three days later, we wrote the following:

Good morning. Just to let you know...Rob was admitted to the hospital last night with an infection and a temp of 101. We don't yet know what is causing the infection. They are pretty sure that it is not the chemo...too early for that. He was resting comfortably last night when we left at about 9:30. They won't let him leave until they find out what is causing the infection. I'll keep you posted.

Little did we know, this wasn’t the first trip back to the hospital that we were going to experience. For this first time, Rob was in the hospital for five days. The Dr’s never found a reason for the fever. They finally decided that it was a reaction to the chemo. In retrospect, this should have been their first decision.

Well, Rob was finally let out of the hospital and as you will read, Lee and I were happy to get him home.

I am very happy to report that Robert came home from the hospital this morning!!

The temperature and white count problems seemed to be related to the chemo. The oncologist said that the chemo may be "melting" the tumor. The resulting cells were being shed by the body and causing havoc. Hence the temp and white blood count problems.

The chemo also caused a problem with lowered red blood cells so he was given 2 units of blood on Thursday. An additional medication will be given after the next chemo to help control that red blood count problem.

There is a small problem with chest tube site. Seems to be a staph infection which I'm treating with prescriptions here at home.

The box from Dayton has been opened and created wonderful smiles. Hint: it's a PlayStation 2 with a game and DVD. Thanks everyone!!

Thanks for the prayers and cards. We're going to go through all the cards again. That will be very enjoyable.

So, he came home, not knowing what happened, but we liked the “melting tumor” visualization. That meant the chemo was working….right?

Rob also enjoyed the cards and presents he got from everyone. He especially liked the funny cards. They made him laugh, which was something he needed at this time.

The email above stated that Rob got a PlayStation 2 from his friends in Dayton. Unfortunately, Rob never played with the PlayStation. He never seemed to have the energy or the ability to focus on one thing for any length of time. He didn’t even have the energy to focus on television. Between the PlayStation and TV, those were his most favorite activities. Now, he couldn’t do either. He just stayed in his recliner and slept.

We then took a break from Rob’s chemo to try and have a normal Thanksgiving. Here is what Lee wrote:

Family and Friends,

Our family gathered yesterday to stuff ourselves on stuffing. Yum. Good food and plenty of leftovers. Yum again!

On Tuesday, Robert had a port inserted in his chest. The port will aid in dispensing chemo and will also be where blood will be drawn. After 5 days in the hospital last week, Robert doesn’t want to prodded and stuck in the arm any longer.

Anytime he has a procedure done or goes to the hospital, his energy level is depleted. It takes several days to regain strength. Today is better than yesterday. Today he was able to stand in the shower; yesterday he sat on the stool my father used when he was in the assisted living facility.

Yesterday I discovered a small wad of hair in the tub after his shower. I'm wondering if any of you has a suggested on how to stop the hair from going down the drain.

The next chemo treatment will be next Friday, Dec. 6 and then again on December 29.

I also wrote to my email list about Rob and his journey. One thing about Rob is that he had a positive attitude throughout (or at least he seemed to). He kept us on an even keel. I guess he was being the “minister” even then. We wrote...

The last seven days have been a fairly trying time for Rob. His nausea still continues to be a problem. He can't keep any solid food down, so we feed him a lot of juice, water and an supplement drink (Boost). Because of this, he has now lost about 65 pounds. Because of the weight loss, he is not able to do much. We take him out for rides to get him out of the house, but he is really only able to do that for about 20 minutes before he tires and has to go home. I continue to be amazed at how little strength he has. He does, however, have a will that keeps him going. He seems to accept what comes his way as the price to pay for ridding his body of cancer.

Even with his lack of strength, we were able to attend our first support group session. We only were able to stay for about 30 minutes (because of his getting so tired), but he was able to say, in front of other cancer patients (and survivors), what his cancer is and what has happened to him up to this point. That, to me, was a big step. We'll continue to go to the sessions with Rob (even his brother Charlie wants to attend each session) every other week.

Another byproduct of the chemo is hair loss. He now has lost 80% of his hair. He says that it's good he isn't vain, or it would really bother him.

Rob's next chemo is tomorrow morning. Not something I would look forward to, but as he says "it is the next step in his journey."

Along with the negatives there are a lot of positives. We enjoy having him home. He learned that he has a huge number of people who are praying for him. He has seen how his friends have pulled together to support him. He gets to be pampered and loved. He gets to experience a brother's love and caring. Without the cancer, he wouldn't have really experienced these things in so short a time. That's our gift to him, and his gift to us.

Thanks for asking about him. It helps us to talk about what is happening.

At this point, Rob's back started to bother him. We felt that the pain was caused by his sitting in the recliner without changing position.

As you will see later, the backache wasn’t from the recliner as we thought for so long. It was actually caused by cancer getting into the bone. But we wouldn’t know that right now. After Rob’s second chemo treatment, here is what Lee sent to her email friends:

Hello Everyone,

This past week has been rather uneventful. Yippee!!!!!!!!!!!!!!!!!! I'd settle for lots more of that.

We had 2 cousins come for short visits (separately) during the past 2 weeks. To come to Minnesota at this time year is either foolish or very loving. We love that they did this.

Robert's hair has come out fast. Today it seems that he's lost 90 percent of the hair on his head. I understood that the hair loss would come after the second treatment, but Robert "being an over-achiever" had to jump the gun. That quote is from my friend with breast cancer.

Tuesday was the day he and I saw significant hair loss -- in his hairbrush and in the tub.

Thank you for your suggestions on how to prevent the bulk of the hair from going down the drain. We now have a strainer in place.

Earlier this week Robert was unable to keep anything on his stomach. It was a rough 5 or 6 days. He had so little energy because of the lack of food and lost another 17 pounds. But he is now taking a different anti-nausea medication; it seems to be helping immensely. Marking 36 hours without emptying his stomach.

Yesterday was the second chemo treatment. There will be another in 3 weeks on Dec. 27. That means that Christmas is in less than 3 weeks. Thank goodness for online shopping!!

We had to eat our words, and then sent this email the following week.

Hello Everyone,

Just what was I thinking when I sent last week’s note!! If I were a superstitious person, I would be suspecting something. Uneventful, indeed!!

Yesterday morning around 6:15, just as Pete was ready to walk out the door, Robert went to the bathroom. He was in the small bathroom on the main floor, a powder room really. I heard a thump and another thump. I knocked on the door and there was no response. I tried opening the door, but Robert was blocking it. Again no response. This time I was more successful opening the door by pushing his arm and leg out of the way. He had passed out. Pete quickly called 911 and answered all the prerequisite questions. Paramedics arrived in minutes, followed by emergency techs. Note: if you ever call 911, make sure the door is unlocked; they just walk in.

First question to Robert from the paramedic was “Hi, what’s your name?” His answer was “Robert”. Yes. He was back.

Checking his blood pressure, the first cuff was declared not working. The reading was 80 over 20. Brought in a second cuff and found that his blood pressure was 80 over 40.

And then Rob’s second trip to the hospital….Lee wrote:

Our townhouse is small, with tight corners. No way to maneuver a stretcher. So he was put on a backboard and hauled out manually into the cold (14 degrees). Thank goodness for his weight loss. Thank goodness also for warm blankets from the ambulance.

I don’t know how many people were in my house, but there was an ambulance and 3 squad cars outside. They were all gentle people.

Robert’s blood pressure remained very low all morning but was normal in the afternoon. He remains in the hospital (Woodwinds in Woodbury). If you call, plan on a very short conversation, Robert tires easily. Pete and I don’t make many calls except to family and local friends and those, too, are short.

His white cell count remains very high. More blood cultures are being run to see what’s causing the infection. His temperature continues to spike.

Our minister asked Pete last night if he believed the doctors were being truthful. Good question. Pete said he believed that our questions were being answered and that they were telling us what they were doing and why. But, as he said, the unasked questions were not being answered. Problem is we are not ready to speak those questions. Someday. But not today nor tomorrow.

Robert’s internist says each time he sees Robert that he praying for him. And each time he says that, a voice in my head screams: “Praying?? Don’t pray!! Fix him!!” But each time I look at the doctor in the eye and say out loud, “Thank you very much”.

Has anyone bought Hallmark stock? I highly recommend it. If you could see the stack of cards and more hanging on his bedroom wall, you would understand. The cards are much appreciated by all of us; the prayers are felt and seen in so many ways.

I hope this holiday season finds each of you well and happy.

Peace to us all,

Lee

It took another five days before Rob got to come home. I think this was the first time that we totally faced the fact that Rob might not make it. We had glimpses of it over the last month or so, but things turned around and Rob seemed to be making some progress. Wishful thinking is always a good thing when you’re hoping for a miracle. I’ll never really understand why that miracle didn’t happen. Rob wasn’t a saint, but his life had meaning and he had found a purpose in life that he truly enjoyed and was striving for.

Through all this, we continue to be amazed from the support Rob received from people in Minnesota (his home), from his church in Dayton and from his classmates at the Seminary. With everything that was going on during this holiday season, Rob received a welcome visitor…

Rob had a great visit yesterday from his pastor and another member of the church in Dayton (the church he serves in as pastor). I thought they were coming up for business and were stopping by to see Rob also. It turns out they came all that way just to see him, and to give him gifts that some of the people in the congregation wanted him to have. There was some money (about $150), a homemade quilt and a homemade afghan, some stuffed animals, some books, and some food. What a gift for him to have them come up just to see him and also to bring presents from the church.

What a gift for Rob. It showed him how much he means to people and how he has affected their lives. Can you imagine that someone would travel twelve hours by car to deliver presents and to talk with Rob for about an hour (spaced over about three different visits during the day to help conserve Rob’s strength).

It is now close to Christmas and we’re trying to get into the spirit for Rob as well as for all of us. Lee wrote this just before Christmas…

Dear Family and Friends,

My report this week will be thankfully short. Robert has settled into a routine that is easy for Pete and me to manage. He remains very weak and spends many hours sleeping.

Pete and I are working more hours at our respective offices. Midday I go home to prepare Rob's lunch and to see how he is managing. Because Pete arrives at his office very early, he comes home mid-afternoon. So Robert isn't alone many hours.

Robert does spike a fever in the evening, but we think we have a handle on bringing that down. We encourage him to drink plenty of water and juices.

The nausea seems to be under control as long as we get his medication to him 30 minutes prior to a meal.

Our Christmas tree went up today. Tomorrow we will be decorating it. Part of Christmas Day will be spent with some dear friends in St. Paul. It's a nice to time to kick back and play with their dog.

Speaking of St. Paul, we invite folks in or near the Twin Cities to visit. I've been pleased at how much visits mean to Robert. Since the thought of being in Minnesota this time of year may not be your cup of tea, I invited you to email Robert at rjmeyer@ix.netcom.com

Continued thanks for your prayers, cards, warm wishes, healing thoughts.

We all wish you a very Merry Christmas and a very Happy New Year.

Peace to us all,

Lee

Christmas ended up to be an enjoyable time. We spent Christmas eve with Charlie, and Christmas day with our friends Pat and Bill (and many others) in St. Paul. It was a great time and Rob seemed to be doing fairly well. He ate better than normal and was able to keep everything down. That seemed to be the last of the good times for a while. Rob had a chemo treatment a few days after Christmas and this is what occurred…

December 24, 2002; Christmas Eve

Hi, all, I wanted to take a few minutes and update you on Rob's condition.

Last Friday Rob had a chemo appointment (his third chemo session). We met with the oncologist first and found that the regimen he was using was not working. There are increased spots on both lungs and now some new cancer lesions on his spine. Because of this news, and the fact that Rob has ended up in the hospital three days after each chemo treatment, the Dr. has changed his chemo regimen. Rob still has chemo every three weeks. However, since the drugs are different, on the first day of the chemo cycle, he gets two drugs (Gemzar and Taxotere), he then waits one week and then gets another dose of Taxotere. We'll follow that treatment regimen until Rob has another CAT Scan done to see if there is any affect on the cancer. We'll keep our fingers crossed.

As for the lesions on his spine, the Dr. wants to look more closely at that, so Rob has a Bone Scan scheduled for Thursday of this week. He will have to swallow some type of nuclear liquid and then return in three hours to get an X-ray.

The Dr. is also worried about Rob's liver function. He is not yet sure whether the cancer on the liver is affecting the liver. Rob will have a Liver Function Test performed in three weeks when he goes in for his next Dr. visit.

As you can probably guess, we're quite unsettled about the news that the cancer is still spreading. We can only be hopeful that this new regimen will be what he needs to go into remission. I guess Lee, Rob, Charlie (Rob's younger brother) and I are all dealing with the possibility that the cancer won't be able to be stopped.

Thanks for all of your kind words of encouragement through all of this. We really appreciate it.

Definitely not good news. So, with more trepidation, we all went into the third chemo visit…still with some hope, but not much. You could see that Rob was less positive than before. We all were. Privately, Lee and I cried because we were feeling that we were going to lose our boy….and there was noting we could do to change that.

January 17, 2003

Well, he had his third chemo and then, I wrote this email…

Well, I did speak too soon. Rob passed out this morning about 5:00 am, so we're here in the hospital. He is still pretty much out of it. His temp is normal, but his blood pressure is low. Right now it is 75/35. They will probably need to give him more blood this time, since they say his hemoglobin is low (8.9 when it should be around 14).

Right now he is in a room where they can keep track on his blood pressure, heart, and oxygen level (one step down from ICU).

We'll let you know more when we hear more from the Dr. They say that his primary Dr. is going to talk with the Oncologist to see what they need to do.

This is more scary than the last time.

All of us had a right to be scared. Things weren’t looking good. As I think back on the above email, it is interesting. I thought an 8.9 hemoglobin level was low. At the end, Rob's was below 5.0.

So, we “hunkered” down to be with Rob in the hospital. Then we got a visit from the Oncologist in the hospital. I guess we were all expecting what he said…and this was just a little over two months from the time Rob had his surgery.

Hi. I, unfortunately, have another update about Rob. As you know, Rob passed out this morning and we had to take him to the hospital again. This afternoon, Rob had a visit from his Oncologist and his primary physician. In essence, they both have no new regimen to suggest for Rob. His liver and kidney functions have deteriorated and he now has a bone disease. The final blow is that they don’t have any alternatives to suggest. The cancer has been too aggressive and they don’t have any way to stop it. In short, Rob doesn’t have much time to spend with us. We don’t know how much time he has left, but we will make his remaining time as rich as it can be.

Thanks to you for all your support and prayers. Rob continues to gain strength when he hears from people whose lives he has touched. It helps greatly as he comes to grips, unfortunately, with the end of his life.

We don't know how much time he has left...whether it is weeks or months. What we do know is that Rob is starting to come to grips with the awful news and is dealing with this a little better than we are.

That's all for now. I really can't say anything more.

I couldn’t believe that I had to write that email. It was the first time that I had to acknowledge, in writing, that Rob was going to die.

Rob, Lee, Charlie, and I stayed at the hospital as much as we could for the next few days. We were all trying to deal with the news that Rob wasn’t going to survive his bout with cancer. As for an update, I sent the following email to my sister and brother…

Hi. Just got a call from Lee that Rob will be getting out of the hospital sometime early afternoon. I will be there, since I have quite a few questions for the Dr. before they discharge Rob. Lee is there now and said that Rob seems brighter and ready to go home. Lee and Rob took a walk to the lounge area on his floor where he is eating his breakfast (he doesn't eat much, but at least he can eat). The Dr. will be ordering a home health nurse to visit Rob after leaving the hospital. I'm not sure exactly how often that will be. I'll let you know when I find out.

Rob's attitude is fairly good. He is beginning to accept the fact that there is not much more that they can do for him. He does have one more visit with the Oncologist next Friday. The Oncologist wants another CAT Scan to see if the new drugs Rob just got has done anything at all. If anything has changed for the better, the will probably decide on doing some more chemo. We can only hope that there is a change, but as the Dr. said....if the chemo will only help to prolong life for a few more weeks, and that life is in the hospital, he would choose not to give the chemo.

We have now gone through aspects of a Living Will for Rob. He has made his choices on how he wants to be cared for and what he wants to happen when he passes away. The Oncologist talked about our contacting a hospice to see what they can do about getting hospice nurses to come into the home to help with medications/etc. We'll find out more as we continue this journey with Rob.

Maybe the word “journey” is too tame for what everyone was going through. This was like a trek through a deep, swampy area with biting bugs and poisonous insects and animals….with muck up to our hips. I can only imagine how bad it felt on Rob’s end.

Well, we got the home health nurses started…

Just a quick update on Rob's condition. The Dr. has ordered a home-health nurse to visit the home every two days to do blood work and to check his oxygen level. Rob is short of breath and they will need to check to see if he needs oxygen. Right now, I don't think he'll need it, but I don't think it will be too long before they will need to order it. He is very weak and needs help to get to the bathroom. Lee and I will be taking turns sleeping on the couch so that we are near when he needs anything. He still has bouts of nausea, which will hopefully go away as the chemo gets out of his system. It is so sad to see him like this. What was a strong boy in August is now a very weak and fragile person.

Rob continues to be in a fairly good mood (except when he is throwing up). Our minister will be coming to visit today and will probably bring communion, which is something that Rob has asked for. We are now trying to limit the time people spend with him, since it tires him out so to get company. Lee's cousin wanted to come visit in a few weeks, but we had to say no (Rob said that it would be too much for him).

Rob had his final CAT Scan and the bad news seemed to continue…As a matter of fact, it was the first time that we really talked in detail about hospice. Up until this time, the word was mentioned, but there wasn’t any action behind the word. But now there was action.

In another update we said…

On Monday, Rob had a CAT Scan so that the Oncologist could see if the last chemo had at least stopped the spread of the cancer. Lee and Rob just got back from the Dr. and as we feared, the cancer continues to spread. There is more evidence of cancer in the lungs and in his liver. We expected this, since he was getting more jaundiced since his last Dr. visit. Rob asked how long he had left and the Dr. couldn't answer the question....so we don't really know how much time we have left with him.

It also seems that the cancer has spread to two locations in the spine. The Oncologist wants Rob to get radiation on those areas so that they won't continue to cause problems and result in brittle areas in the spine. It just seems to get worse every day.

The Oncologist is going to contact hospice nurses today, and they are going to call us to let us know what they can do for Rob going forward. If the cancer continues to grow at the rate it's growing, I don't expect him to last more than a month or two.

So sad.

Sad is really an understatement of how we felt. We were numb. We seemed to be walking around in a fog…trying to do things for Rob as well as for ourselves.

Because of the cancer on the spine, as well as a hip (which was what was causing his back pain), the Oncologist set up appointments for radiation. It was difficult to get Rob to the office for the radiation. He was weak, in pain and had little or no energy. To get to the car, he needed to use the walker and wheel chair. It was difficult for us, and very difficult for Rob. This is how we communicated this part of his illness to friends and family…

January 26, 2003

I just wanted to let you know where things are with Rob as of today. This morning he goes in for his second round of radiation. There will be a total of 15 treatments over the next three weeks. Each treatment lasts about 10 minutes and is trying to stop the cancer that is on his spine and hip. They are doing that so that the cancer won't make the bones brittle and cause him a great deal of pain.

Rob is now down to about 200 pounds. That's about 75 - 80 pounds down from when he left for Dayton this summer. He continues to sleep in a recliner chair that we brought up from the family room. I'm not sure that he will ever be able to get up to the second floor to use his bed and take a real bath. The Physical Therapist who comes in wants that as a goal. He still needs a walker when we go from the house to the car. We don't want to go to a wheel chair yet, since that will mean he won't get any exercise at all.

The hospice people come out this morning to talk about what services they can provide. They were supposed to come out on Tuesday, but the plans changed because the Dr. who oversees the radiation therapy wanted another CAT Scan and some X-rays. Rob also had to get another two units of blood on Tuesday, so he was at the hospital most of the day.

Rob continues to have bouts of nausea and throwing up. They are not associated with the radiation, so I hope they will lessen as the chemo goes out of his body. He doesn't seem to be as jaundiced as he was last week, which we take as a good sign. His appetite is coming back and he is eating more solid foods. If we can ever get the throwing up under control, he'll be able to "own" his food for a longer period of time. Charlie is bringing over some Italian food for us tonight, so we'll see how that goes on Rob's stomach.

That's all for now. I'll let you know, tomorrow, what the hospice person says.

And then we had a visit from the Hospice social worker. During that meeting, Rob asked about how long he had before dying. The social worker said that in many cases, Hospice is called in anywhere from a week to six months before a person passes away. Here is my report to others about the visit.

I just wanted you to know that Lee and Rob talked yesterday morning with the hospice people. It looks as if they will begin to monitor him and to bring in any equipment needed as his cancer progresses (e.g., bed, wheel chair, oxygen). They will also be providing some other services, but we're not quite sure what they are going to be. We have another meeting with them today or Tuesday. From what I understand, the hospice meeting was a pretty difficult time for both Lee and Rob, since Rob had to sign some paperwork that discussed his terminal illness and that he wanted a DNR in place. No one knows how long he has. As you might expect, he has good days and bad days. He has to do a lot of walking to get to his radiation treatments (a good thing), and we will need to keep him active so that his strength doesn't decrease rapidly. I talked to him about his meeting with the hospice people and whether it was difficult to talk about a terminal illness. He said that he understands that there isn't anything else they can do, so he is beginning to accept the fact that his time with us is short.

Yesterday afternoon I got a call from one of Rob's professors at the Seminary. He said that he wants to put together a video to send to Rob that will include messages from many of his classmates and professors. He said that Rob is a special person who has touched many lives at the school, and that the effect he has had on others will carry with those people as they continue on in their ministry. I also got a call from the pastor from the church Rob worked in. He is planning to come up to MN again to visit him before the time when Rob won't be able to handle visitors. Hopefully, that will be a long time from now...although, I am not sure how much wishful thinking is in that statement.

Rob then continued with his radiation treatments. This is the update at the end of the month…

Rob is finishing up on a 10-day radiation schedule today. The purpose of the radiation is to retard the growth of the cancer on his spine and hip, so that his bones in those areas won't become brittle. It has been a chore for him to use the walker to get from the living room to the car, but he does not yet want to use a wheel chair. His determination and will is amazing.

One negative milestone happened last night. Rob began using oxygen for the first time. He became short of breath and asked that we hook up the oxygen machine. Machine is an appropriate word for the oxygen supplier hospice gave us. I expected that hospice would send an oxygen tank to us. Instead, they sent a unit that produces oxygen (condenses oxygen) from the air. This will provide oxygen without worrying about a tank running out in the middle of the night. It makes quite a bit of noise, but doesn't seem to keep Rob from sleeping. Since Lee and I take turns "sleeping" on the couch next to him at night, it's a little harder for us to get used to the noise, but I assume it will become "white noise" quite soon.

Rob has been getting regular visits from the hospice nurse and the home-health person. The home-health person is the one who comes in and gives him a bath. Rob kind of looks forward to that. He likes visitors, even though it wears him out.

We now have a wheel chair ordered and that should come today. I think that will be the next thing Rob will have to get used to. One added benefit of the wheel chair is that we can use that as a safer way to get him to the car, so that we can take him for short rides around town. Just to get him out of his chair and house.

I guess the final word is that that hospice people don't think Rob will be with us much longer (however they don't define how much time that is). His body is just getting tired of everything it is being put through. I don't blame him for that.

That's all for now. Thanks again for your support. It really helps all of us.

Things then started to change dramatically. Even thought we didn’t know it, Rob would leave us in three more, short weeks.

Hi. Just wanted you to know the latest. I believe that Rob has begun his downward spiral. The hospice nurse was in yesterday and tested his oxygen level. The level was 83%. It usually was 94%. He is now on oxygen all day. We had him on oxygen for only a few hours a day, but he gets dizzy when he gets up to go to the bathroom, so the tube will now always be with him. The nurse comes in again today. She will take a blood sample and I would expect that a transfusion will be required. They don't seem to do a lot of good, but he says he wants them as long as they can help. 

Charlie came over last night, and I expect that he will be back tonight. We all realize that Rob's condition has deteriorated quite a lot in the last three days. He slept most of yesterday and I expect the same to happen today. I hate to say this, but if his condition continues to go downhill at this rate, I don't expect him to be around more than a week or so.

Things kept changing dramatically every day. About ten days later, Lee wrote the following email to all of our friends…

On Friday, January 31, Robert went to Woodwinds (our local hospital) to receive a transfusion, 2 units. Each time he receives a transfusion, the expectation is that he will have more energy. Pete and I don’t see any more energy. Perhaps he is a little brighter but he remains quite weak.

The good news is the radiation treatments received in mid-January have left him pain-free!! He was experiencing a great deal of pain in his lower back. But we celebrate that is all gone. Now over all, he is pain-free even though the cancer has spread to bones, liver and lungs.

The hospice nurse came to the house Wednesday (2/5) to draw blood for a hemoglobin check. His hemoglobin was 5.1. That’s as low as it has ever been. So back we went to the hospital on Thursday for another transfusion, 3 units. It’s an exhausting process for him just getting there, sitting for 8 hours, and then getting back home.

Robert is calling the shots now. He opted to have the transfusion. He agreed to the wheelchair, but not the hospital bed.

Up until Jan. 31st, Rob had been walking to the car, using the walker. But he is unable to do that any longer. A wheelchair was delivered by hospice just before we went for that transfusion. Our house isn’t ADA compliant so he must go up and down a couple of steps. Pete and I cannot pull the wheelchair up those steps, so we talk him through the process.

He continues to have oxygen, only now 24 hours a day. It is set at 1 liter. There is peace of mind in having that available.

My distribution list continues to grow. Friday, February 7, was the 4-month anniversary of Robert’s diagnosis. This short journey has been very intense, full of disappointments and also full of love sent our way.

Pete, Charlie and I thank you for your prayers, notes, cards and healing wishes that are sent our way. The shopping bag that I’ve been keeping Rob’s cards is now over-flowing. It is time for another shopping bag.

The downward spiral was getting tighter and tighter. A few days before his death, I sent this email to our friends…

Just wanted you to know that we have asked hospice to provide a bed for Rob. We noticed that his skin is getting red in a few places and are worried about bedsores. The bed will give him a chance to change positions and to keep comfortable. We'll let him use the recliner in the day if he wants, and then move him to the bed at night.

There has been a marked deterioration in the last 24 hours. Rob has started to sleep almost all the time. He is very weak, but still able to go to the bathroom with help. He is shaky and his voice is not much more than a whisper. He gives the impression of being a very old man. To tell the truth, I don't see that he is going to last more than a few weeks more. If he goes down in the next few days as he has done in the last few days, there isn't much time left. So sad to see him go down like this without being able to do anything. I hope we'll still be able to take him to the zoo on Saturday.

I don't want to keep giving you depressing news, but I feel that I need to keep you up on what is happening. It also helps to write it out, without having to talk to anyone. I don't think I could keep it together telling someone face-to-face what is happening.

On the morning of February 20, 2003, Lee sent this email to our ever-growing list of friends to update them on Rob’s condition.

This is a short note to let you know Robert’s condition. On Sunday morning he had a bad spell, aspirating some stuff. I won’t go into details. Since that time, he has failed greatly.

As of now, he is on oxygen 24 hours a day and in a hospital bed. The bed was not something he wanted, but frankly was more convenient for Pete and me to care for his needs.

He hasn’t had food since Saturday and little in the way of liquids in the last 24 hours. He sleeps a lot and cannot be aroused. He can no longer communicate with us except when he is in pain. The pain is from moving him to change his clothes. His body is very stiff from the lack of movement on his part. Pete and I are moving his limbs to maybe help with the stiffness.

We are having a bright sunny day but life is dark at our house.

After a long and valiant fight with cancer, we sent this final email out to our friends in the evening of February 20, 2003…

I wanted to let you all know that our son Rob passed away this evening at 6:50 PM. As many of you know, he had an aggressive form of cancer that couldn't be stopped by any form of chemo or radiation. He said several weeks ago that he had a good life and was ready to go.

Charlie was here about 20 minutes before Rob left us. Our gentle son and brother went gently into that good night.

At this time, we don't know what the funeral arrangements will be. We will meet with the people at the funeral home tomorrow morning.

Rob passed away peacefully with all of us by his side. Even though he couldn't communicate with us for the past several days, we knew that he was aware of our being with him at the end.

Thank you for the kind words of encouragement given to us over these last four months. Those words have been very comforting to us.

Peace to us all,

How difficult it was for us to write that last email. How difficult it was to say that we had lost our child. We called our pastor and he and his wife came over before the funeral home took Rob away…giving us some final time to be with him, and to say a few prayers. It was hard to sit down and talk with our pastor with Rob there, dead, in the same room. I’ll never forget those moments. They were the most horrible moments of my life. Almost as bad as watching the funeral home people place Rob in the bag and take him out of our house for the last time. I didn’t know that sadness had that depth or breadth. At that time, and times off and on now, there doesn’t seem to be a ladder long enough to reach to those depths to help us out.

Section Three - The Funeral

One of the many things we realized was how important it was to hear from people who couldn’t attend the funeral. Rob had many friends at Seminary who wrote and called throughout his illness and months after his death. For friends who are not able to attend a funeral, the greatest gift you can give grieving parents and siblings is:

Send cards to the people who are grieving. If possible, don’t stop at one card. Lee and I really appreciated and needed cards from people long after Rob passed away. It’s a way to let the parents and brothers and sisters that they are still thought about.

Send cards to the siblings of the dying child. Brothers and sisters and also grieving. They hurt and it is important to let them know that they are in the thoughts and prayers of others. Charlie did receive a few cards addressed to him, telling him that people cared.

If you have nothing keeping from attending the funeral…please attend. If you are at a loss for words, don’t worry, and don’t stay away because you have nothing to say. Just being there is really enough. Lee and I felt a lot of joy looking at the Guest Book after the funeral and seeing the names of people we didn’t get a chance to greet. It was wonderful to see that so many people from our past came to honor us and Rob.

As for what to say….”I just wanted you to know that I am thinking about you” is really enough. There won’t be any words that will help the parent, brother, sister or friend forget what he or she is experiencing. Your being at the funeral is support…a show that you love the person who died and for the people who are still living.

Lee, Charlie and I all participated in Rob’s death. We were there when he died. We were there when he took his last breaths. Those memories aren’t going to be erased by any spoken word. Those are memories that fan the fire of grief and keep it burning bright during those many days (and months, and possibly years) after death.

Rob's funeral was at the church we have attended since moving to Minnesota (Woodbury United Methodist Church). The Chancel Choir sang a wonderful anthem: “The First Song of Isaiah”, one of Lee's favorites. Our Steeple Bells (Lee is the director of this handbell choir) rang a beautiful arrangement of “Blessed Assurance” with “Jesu, Joy of Man’s Desiring” running through the piece. The handbell choir had continued practicing on a regular basis after Lee had asked for and received a leave of absence in January when Rob was told his disease was terminal. The pastor at the church where Rob worked (St. Paul United Methodist Church in Eaton, Ohio) came to the funeral with his wife and 2 church members. It was his third trip to Minnesota for Rob. Nice support for our son.

Three of Lee’s relatives came from North Carolina to support us. They came the day before the funeral and didn’t leave until the day after his burial. What a gift that was, to have them here, crying and laughing with us.

We had additional support from my brother George and his wife Fran. They came from Maryland to be with us. What a wonderful gift that was for me to see him and to be able to give him a long-needed hug. My mother and sister were not able to attend because my mother was not able to travel. I know they were there in spirit.

The other thing that I remember prior to, and after the funeral was all of the support that we got from our friends (including food). So much food. It was so important that we didn’t need to worry about cooking, since most of the time up to and through the funeral, we were using all that food to feed Lee, myself, Charlie, Lee’s relatives, and my brother and his wife.

One of the things that I remember with fondness is the support Charlie’s friends showed us. They brought food for all of us and went on errands for us. Even though these were trying times, the support from these people filled our hearts.

I guess there are only two things I can say for people starting in the grief process:

One is to support each other as best you can. It’s ok to cry. You’ll find that if you give yourself permission, crying is quite helpful.

The second is to let others do things for you. When people started asking about bring us food, my first reaction was to say…”that’s not necessary.” Actually, it was necessary. First of all, it frees you up to do that things you need to do before and after the funeral. Secondly, it allows people to do things that show they care. Give up the need to control the situation and let others give. Once you accept their gifts, you will find that it relieves you of stress that you don’t need to have during this trying time.

The funeral was beautiful. Filled with love, sadness, laughter, and tissues. They are all an important part of the grieving process.

Rob wasn’t buried the day of the funeral, since the service was late afternoon (it was still winter in Minnesota and dark by the time the service ended). Rob was buried the next day. It was about 4 degrees below zero that morning. The sun was shining and as you can imagine the service was short. It was a private service so only the family and relatives from North Carolina attended.

I was holding up pretty good during the service until I saw that Rob’s name was on the “vault”. Seeing Rob’s name brought back the reality of his death. As soon as I saw his name, I gasped and started to cry. That was not the first “jolt” to remind me that I would never see him again, and it wasn’t going to be the last.

It was then I realized that these “waves of grief” would pass over me for a long time to come. I likened the “waves of grief” to standing in the ocean. I imagined myself standing up to my waist in the water and turned facing the beach. In this image, I can’t see the waves and I never know when they will hit me, nor how powerful they are going to be. That’s how my grief hit me at the funeral…without warning and with varying degrees of intensity and frequency.

May 26, 2003

Section Four - He’s No Longer At Home

One of the things I finally realized is we started to grieve for Rob about a month before his death. Lee and I would privately cry for the loss of our son, even though he was still with us. I guess it was the fact that Rob was also planning for his death, and it continued to bring home the fact that he was dying.

Now that Rob was gone, it was too quiet in the house. The oxygen machine and humidifier were no longer going. We also put the living room (where Rob was during his stay with us) back to its original configuration. It seemed as if it was a different room. It didn’t have any character anymore. For almost five months, there was a living being in the room at all times. There was background noise in that room at all times. Now there was nothing…no noise and no living being. Now, only memories of Rob and his disease and death remained.

One of the things I noticed right away was the lack of noise. The second thing I noticed was the fact that there was less contact with the “outside world.” I didn’t feel deserted, but I did feel alone. Before Rob’s death the phone rang constantly and the mail never stopped coming. After his death, the phone stopped ringing and the mail (cards) stopped coming.

It was if we were set adrift in the ocean without a safe boat and provisions. If I can give any advice at this time it is to continue to communicate with those who are grieving. Sometimes we want to be alone, and sometimes we don’t want to answer the phone, but if we do answer the phone, that means we want to talk with people…even if it is just to cry together without saying anything.

Again I need to say…don’t worry about saying the right thing during this time. All that Lee and I needed was to hear that people were there and still thinking about us. Since there are no words that will take the pain away, it is not necessary to say the “right things.” Just say you’re there for the grieving person and will do whatever they need done. You might ask if there is anything that you can get them at the store, or to call someone who needs to be called. Whatever it is, remember that whatever you do it is not insignificant. Whatever you do is appreciated and needed by the people grieving.

Lee, Charlie, and I were very lucky to have such good, close friends to help us through the first weeks. You don’t have to have a ton of friends for this to happen. You only need a few, true friends who feel your pain and stay by you, even in silence, providing comfort.

Our friends would call us to ask how we were doing. They would send us email saying they were thinking about us.

What I really need, and don’t have, is a friend who will call me (like with the 12-step program) and work with me through the rough spots.

Section Five – Memorials for Rob

Memorials became very special to us as a way for others to tell us their thoughts about Rob. This is especially true of the memorial services that Rob’s church and Seminary put on. Both of these memorial services provided us with a picture of Rob as a Pastor and a student. Both pictures were fairly new to us, since Rob was so far away from home. Another type of memorial was an impromptu service held at the school's cafeteria. This service gave his professors and fellow students a chance to share their feelings about Rob's death. After this impromptu service, one of Rob’s professors sent us this email…

Lee and Pete, I appreciated the opportunity to visit with you last week and wish we had more time. I stopped by to see you in Roberts Hall late in the afternoon that Friday and was sorry to have missed you.

Students and faculty gathered after Common Meal this afternoon for a time of remembrance of Rob and I thought I'd send you some of the things people said.

Rob is much appreciated and will be remembered for:

His honesty and time of sharing while giving a tour of the campus to a prospective student who is now a full time student.

His contribution to Core Group and willingness to share both the difficult issues and profound thoughts which were formative for group members.

The way he welcomed new students and their families moving into Roberts; it gave them reassurance and conveyed the sense of community at United.

The way he asked students to do things over and over again while videotaping his senior project because he wanted it to be just right; although it was frustrating at the time, they were all able to laugh about it, too.

The mixture of good times and hard times Rob and his friends shared which made them better friends because of it.

His real joy in worship and being part of a worshipping community. When he was in chapel he was often smiling and looked like he felt he was at home there.

His great sense of humor and his wonderful laughter.

His thoughtful responses in class.

The pizza party and laughter shared with friends before he left campus to return home to Minnesota in October.

Rob's gift of hospitality, the gift he offered of making space for people in his heart.

His ability to see the bright side of things in the midst of difficulties. At a campus retreat in early October that focused on joy, lament, and hope he expressed lament about the pain in his left side and joy that it was not on his right side.

There was much agreement that Rob was a joyful person who understood that joy exists in spite of suffering and runs much deeper than happiness.

The sense that Rob was aware of the way that God uses the experiences of our lives to prepare us in ways we are not even aware of at the time.

Well, these are a few glimpses of the ways people remember Rob. No single description can capture all the ways he was known and loved as a significant member of the United community.

We attended another type of memorial service in Dayton. This was actually not a service, but the graduation ceremony for Rob's fellow students...students who started their studies at the Seminary the same time as Rob.

It was very difficult to be at the graduation ceremony. Not only did we see his friends graduate (something Rob had asked to do if the chemo worked), we also accepted one of Rob's diplomas (he had a double major). He finished all of his requirements for the Masters of Religious Communication degree. We accepted Rob's diploma during the ceremony. I can't put into words the variety of emotions we felt during those moments. We were so proud of Rob's accomplishments, and so deeply saddened by the fact that he wasn't there to enjoy the fruits of his labors.

We both went up to the front of the church to accept Rob's diploma. That was really tough. Lee and I were crying...the President of the Seminary was talking about Rob and how much he meant to them, and how much he will be missed, and the students were all standing, applauding for Rob. What a moving moment that I'll always remember...and wish that I didn't have to be in that situation. But, we have visible proof of Rob's accomplishments in Seminary. All of his hard work was acknowledged by his professors and peers.

Relay For Life

Charlie has been involved in the American Cancer Society's Relay For Life for several years. The Relay was held in Hutcheson, MN. For each $10 donated, a luminary was made. This was both a happy and sad time. A lot of money was collected for cancer research. The sad part was to see all of the luminaries that represented people who had died or who had survived cancer. Most of the luminaries were "In Memory of." An awful way to see how much cancer has affected so many lives.

It was also difficult to see Rob's luminaries. There were almost 30 luminaries dedicated to him. It was so difficult to see those as we walked around the area where the luminaries were placed. It was again both a happy and sad time. Again a reminder that Rob was no longer with us.

Lee and I didn't stay for the entire Relay. It was to run from 7:00 PM on Friday till 7:00 AM on Saturday. We were able to stay until about 9:00 PM on Friday and than needed to leave. It was too close to Rob's death for us to spend more time there. Too many recent painful memories.

Section Six - Coping At Work

It is now almost a year since Rob’s death and I can’t believe that the grief is as strong as it was when Rob died.

People seem to avoid me at work. I’m not sure what that is all about. I know I am no longer the happy-go-lucky person that I was before….but I am also not an ogre. I am just more quiet. However, it seems that people don’t want to talk to me….afraid that I will bring up the subject that they feel unable to discuss. It’s too bad that people at work don’t understand that all that I really need to hear from them is “how’s it going today?” And, really want to hear how I am doing.

I guess, after nine months, the pain I am experiencing couldn't be farther from their minds. They have their own hurts and problems, and the death of someone else's child is not something that is going to be on their minds.

Maybe people at work expect the grief to be short-lived. I would have thought the same thing a year ago, but not now. All that I hear from other people going through the same thing is that grief never leaves you. You just learn to handle it better. I hope so, since I really don’t like my depression-like feelings.

I did have one person at work who (at least in the beginning) asked me how things were going (about once every week). She has shown that she is really interested in finding out how Lee, Charlie, and I are doing. She sits down by my desk and lets me talk. She even asks questions. What a wonderful gift that is….to allow me to talk about Rob at work, without tears, but with sadness.

Tears aren’t acceptable at work, no matter whether you are a man or woman. I hear a lot about the difference between how men and woman handle grief…that women have more “freedom to cry.” I feel that only part of that is true.
I wonder how willing an employer would be to keep a person on the job if he/she were crying all the time…no matter what the gender.

I now find that I pretty much do my job, without much interruption, and go home at the end of the day. Depending upon how my day went, I’ll either drive home in a fog, or pay attention to what I am doing. I find, also, that sometimes my “grief anger” comes to me when I am driving. I find that in grief I can either get really angry with people, or not give a ____ about what is happening. One time a person can cut me off and I will get angry. Other times, the same thing could happen and I wouldn’t react. I guess that would be my zombie phase.

I’m not really sure what the anger is all about. I am not angry at Rob for getting cancer. Maybe the anger is about the false hope I got when we received all of those calls, cards and letters from hundreds of people saying they were praying for Rob. I guess I’m angry that those prayers didn’t work the way I believed they should have.

Section Seven - Surviving Special Days and Holidays

This section is really going to be an ongoing one…especially since we have not gone through all the holidays yet.

The first special day we went through was Rob’s birthday. It occurred three weeks after his death. At first I wanted to go out to an expensive restaurant and have a “memorial dinner” for Rob. Lee and I decided that we didn’t want to ruin the other diners there by allowing them to see three people crying at their table. We decided to have a family celebration (Lee, Charlie, and me) at home, toasting Rob with Champagne and eating a special meal. The grief was there in full force, but we didn’t involve strangers in our grief. Even though we were still numb from Rob’s death, we did manage to have a few laughs, many hugs and kisses, and many tears.

The next special day was Mother’s Day. I did pretty good until close to the end of the Day. Lee wanted to watch one TV program and I wanted another. She went upstairs to watch her program and I stayed in our family room to watch my program. I don’t know what came over me, but I couldn’t stop crying. The crying didn’t last very long, but I was surprised that I was the one to cry on Mother’s Day and not Lee. If I felt like this at Mother’s Day, how am I going to get through Father’s Day?

Well, Father's Day felt like a breeze. I was visiting my Mom and Sister over Father's day. Since my mother has Parkinson's, I was more working on keeping her company, and not so much thinking about Rob and the fact that there was one person to wish me "Happy Father's Day."

Now we have the "reminder day season." Those are all those days that remind us of Rob and the journey he took from the time he found out he had cancer to the time he died. These reminder days include:

October 7: Rob called to tell us he was diagnosed with Cancer
October 11: We flew Rob home from Dayton and he say the surgeon for the first time
October 23: Rob's operation
February 20: Rob's death
March 14: Rob's birthday
May: Mother's Day
June: Father's Day

Section Eight – Planting Our Trees

One of the ways that we have found to help us in our grief journey is to think of concrete ways to keep Rob’s name alive…to keep it out in public. One of the ways we have found to help us is to plant trees in places where people will remember him. One of the places is at our church. The other place is at the Seminary Rob attended prior to his death.

April 24, 2003                                           April 24, 2004

The tree planting at the Seminary was the first. It occurred after the memorial service they had for Rob. All of Rob's classmates and professors attended. They had pictures and video to show of Rob during the service. How bittersweet it was to see him on the video laughing, when we would no longer hear his laugh in person. Once the memorial service ended, we left the chapel and went to a place near the chapel. The hole was dug, and the entire family grabbed the tree and put it into the hole. Then each family member placed a shovel-full of dirt into the hole. Very symbolic, and very sad.

It is great to see that Rob's tree at the Seminary began to blossom one year after it was planted.

The second tree planting was at our church. Our good friends Pat and Bill gave us the money to buy and plant the tree in Rob's name. After several weeks of working with the church to determine where to best place the tree, it was planted. Pat, Bill, Lee, Charlie, and I were there. Pat brought some origami swans, which we attached to the tree limbs. Our pastor, Doug Nicholas was there and we all held hands and said a prayer. Also very sad.

June 11, 2003

We now get to see the tree whenever we are at church. We sometimes just drive by it when we go to the cemetery.

And now we also get the chance to see the tree in full bloom. It started to bloom on Mother's Day....so appropriate.

May 10, 2004

Memorial Bell

When Rob died, we asked that no flowers be sent. February is very cold and flowers on the grave would die almost immediately. For example, the day Rob was buried, the temperature was minus 4 degrees. Not a good environment for flowers.

We asked instead that, if people wished, to contribute to a memorial fund.

Through the generosity of our family and friends contributing funds, Pete and I purchased a handbell and its carrying case for Steeple Bells. Steeple Bells is the handbell choir that I have directed for the past 18 years, and where Pete has rung for 14 years. Rob rang with Steeple Bells several times. Charlie had rung with this choir during his high school years.

We purchased an A#2 (Bb2). (Middle C is identified as C5.) This note is found on 2 ledger lines below the bass cleft. The manufacturer of this bell is Schulmerich Carillons, Inc., Sellersville, Pennsylvania.

The bell was ordered early last fall. It was delivered shortly after Christmas. The bell was specially cast and tuned to match the current set of bells at Woodbury UMC.

The bell weighs approximately 10 pounds, is 16” tall, and can be played using one hand, though I use 2 hands to pick it up. It has a wonderful sound. I can feel it in my sternum.

We are delighted to honor our son in this way. He loved music; he had a lovely tenor voice and played his guitar with delight. Fortunately we have a video of him playing and singing.

The picture below shows the A#2 bell next to the smallest bell. The weight of the small bell is several ounces and 2 bells of this size can be held in one hand and rung individually. This little bell is the C8, found five ledger lines above the treble clef.

There are a variety of ways Rob was memorialized. Another way was by having people send us memories they had about Rob. These memories included:


Here's something for the childhood memories section:

From our friend Chris:

Jan. 9: How about the time you brought Charlie home from the hospital as a new baby, put him in Robert's lap. Rob was so freaked he dropped both hands away. (Good thing he was sitting on the couch.)

From Lee:

We moved into our townhouse when Robert was 3. It was a really safe neighborhood and Robert had the run of the property. We were surrounded by prairie. I learned later that Robert would go to some of the neighbors’ doors, introduce himself and ask to go in.

Once Robert rang Chris' doorbell and ask to come in. Chris asked if I (mom) knew he was there. Well, of course, not. So he would call me to say where he was. He would come and sit for a few minutes. And then soon he was on his way.

From friend Jane:

Jane, her husband and girls were our neighbors.for a couple of years. A day or so before they moved in, Jane and the girls came to visit their townhouse. Robert was probably 4 years-old. He saw them and said, “I’ll take you for a tour of your new house.” He took them around the house. He said "This is the mom and dad’s bedroom. This is your bedroom, he said to Robin. This is your bedroom, he said to Jill."

It Turned out he was right. The girls lived in those rooms while they were in that house. He and the youngest were great friends until they moved away. Jane She remembers him with a “fantastic mop of blond curly hair.”

Jane and family moved to Belgian. The Meyerson family went to the airport to see them off. Robert cried and cried, knowing his friend Jill was leaving. Around midnight on the plane, Jill cries and cries. “I want to play with Robert.”

Now a little later, Robin, Jill and Jane are in the car in Brussels. The radio is playing John Denver’s “I’m leaving on a jet plane.” Jane said...we are listen somberly. We are a long way from home. Jill speaks. “I have a tear in my eye for Robert.”

When Rob was in his 20’s, Jane attended a paleontology presentation of his senior project. She remembers that he was “so dynamic, comfortable, funny.” She was so excited about the present that she talked and talked about it for days.

“Sometime in that time frame, you (Rob) come over to my house and we sit on the sun porch. The sun is streaming in and we talk so easily and you pet Buck, my cat. He is beside you, as close as he can get, and you rub his ear and pet him in such a gentle, natural way. I am fascinated.”

Later another card from Jane: Jill comes rushing into the house all excited. “Robert kissed me.” Robin and friend Michelle, green with envy, say something mean like “ugh”. Jill defends herself. “It was a dry one.”

From friend Pat:

Pat is a good friend and our former neighbor. One day Robert rang his doorbell and asked to come in and look around. Pat said that would be okay, but not to let out his pet fly Tyron. (I think there may be a last name for the fly, but I don't remember it.)

Robert says, Pet fly? Yes. Tyron lives near the fireplace and wears yellow and black stripped shirts. Not knowing this story, one night Robert came out of his bedroom and said that Pat had lost his pet fly Tyron. He told me that Mr. Cosgrove had a pet fly that lived by the fireplace in his house. I didn’t know about the visit and the story about Tyron.

Later we found that another neighbor had a new dog named Tyron. Tyron, the dog, had escaped and his owners were trying to catch him.

A different memory:

More recently this was told to us by one of the young ladies at the church in Ohio where Robert worked described Rob as “a child in an adult body with a drivers’ license”. Very true.

From Two of Rob's Classmates:

From: Ryan and Kris Mutzenberger

Hello, Meyersons,

Wanted to drop you a note to say how much I've been blessed by Rob this week. Two weeks ago I began leading my worship committee through preparations for All Saints Sunday. In that preparation I was allowed to tell others about my friend Rob.

This past Sunday, All Saints Sunday, my sermon was entitled "The Saints and Lessons Learned." Again I was blessed to be able to share Rob with others. I spoke about his incredible spirit filled laughter; his deep desire to ask the next question; his all encompassing ability to worship - Rob worshipped through song, movement, spirit, body, and mind; I told two congregations about my conversations with Rob as he lived with cancer; I shared with them his friendship, his love of Christ and some of the lessons learned while we were at seminary together.

I thank God for sharing Rob with me and all of us. I continue to keep you and Pete in my prayers. May God's comfort continue to hold you, continue to strengthen you, continue to grant you grace. Peace and blessings,

Section Nine -- Readings and the Internet Resources by Lee

November 20, 2003:
In the months since Robert has died, I have done considerable reading. Many books have been loaned to us and some have been given as gifts. The intent of this section is to share with you the ones I have found very helpful. I am also providing information to indicate my impressions of each book (some of which I have scanned and some of which I have read more closely).

The Feeling Good Book by Dr. David Burns. This book provides a look at depression. Early in the book there is a instrument to evaluate your own journey through grief. I’ve taken the instrument several times. Early in my grief, I found I couldn’t even read the statements. Seven months later I could evaluate myself and found I wasn’t depressed. I decided I was profoundly sad.

Touching the Edge by Margaret Wurtele. This book is written by a woman who lives in Minneapolis. She lost her only son in an accident. She documents her grief journey vividly. I identified with her writing.

The Gift of Hope by Dr. Robert Veninga. Dr. Veninga lost a dear friend and was moved to document his feelings and emotions. He interviewed many people and found that everyone experiences different feelings and emotions.

Death and Dying by Elizabeth Kubler-Ross. I had a copy of this book many years ago and loaned to someone. It was never returned. It will be added to our collection. The book specifically outlines the crises of grief.

I believe it is also important to include links associated with Robert’s life, illness and death.

http://www.woodburyumc.org This is the web site for the church that our family has attended for the last 25 years. Robert received counseling and advice about his desire to attend seminary.

http://www.uwrf.edu This is where Robert went to undergraduate school. His major was Geology. He went on many field trips sponsored by the school. He loved those trips. After Rob’s death, we found 4 boxes of rocks (collected from many places) which we donated to the school.

http://www.united.edu/ This is the seminary Rob was attending. We made many friends with faculty and his classmates.

http://www.cancer.org/docroot/home/index.asp This site didn’t give us much information about Robert’s cancer. Little research has been done on kidney cancer.

http://www.nci.nih.gov/cancer_information/cancer_type/transitional_cell/ This site was found recently. The information is conflicting from our experience.

http://www.mayoclinic.com When I was researching Rob’s illness, this is one the sites I visited. The information was limited and not encouraging, as we soon found out.

http://www.webmd.com This is another medical site that I visited several times looking for information. This site was not encouraging.

Edited and copyrighted by Pete, Lee, and Charlie on 02/25/2010.