Happy Birthday papa

Just a quick note to say happy birthday dad... and we're thinking about you.

To a friend who's husband may be facing a diagnosis of pancreatic cancer

I sent the following message to a friend who is concerned about her husband. They're currently going through the process of trying to get a diagnosis, and don't really know for sure if it's cancer, just a spot, or what:

I apologize in advance... i hate unsolicited advice, and It's really not my place... but... here I am... offering it.

More than 4 years ago... when my dad was in a similar situation to what you've described with your husband, and before we knew anything, there are a few things that I really wish that I would have known. Out of my own issues in still dealing with that entire process, I wanted to pass them along to you.

First of all... no matter how the tests turn out or what they tell you, and before you do anything, get a second opinion. Go at least as far away as the Med Center in Omaha. They've got a good oncology center. Even better, there are at least 2 centers with pancreatic oncology specialists who would be great to to talk to. Even if, initially, it's just over the phone for advice on where to go, or what to do.
http://www.cancer.mgh.harvard.edu/cancer_surgonc_clininvest_pancreatic.html
http://www.bestdoctors.com/en/askadoctor/a/abbruzzese/jlabbruzzese_080100.htm
or maybe any of the people who present at a conference like this:
http://www.aacr.org/2004pancreatic1.asp
With the really scary cancers or other diseases, it's absolutely best to talk to the experts.

Assuming the worst, pancreatic cancer (but hoping that it's absolutely nothing)...

Whatever statistics they give you... look at them carefully (or don't look at them at all). For example, the statistics they gave us for survivability, etc (for Kidney Cancer)... were waaay off. They were based on data that was collected back in the late 1970's and early 1980's. Oncology as a whole has progressed leaps and bounds since almost any of the "survivability" statistics were collected, and the stats they give you will basically do nothing other than scare the crap out of people... I seriously have no idea why they even try to present them to patients and their families.

I know that it's dire, and terrifying, and seems like you have to react immediately – but these things really don't grow overnight. You have at least a little time before you have to do anything (no matter what the doctors say). Furthermore, remember that the treatments for cancer are often just as dangerous as the disease itself... don't rush into anything because you're feeling pressure. Sit down as a family and discuss it.

You have time to shop around for someone who really knows what they're doing. You have time to find a true expert that will really do everything currently possible to make sure that treatment starts out in the absolute best way. In our situation, for example, the doctor who performed the initial surgery on dad missed a big tumor that really impacted the rest of his life, and caused so many complications. I strongly believe that if they would have caught that big tumor that was hiding during the initial surgery... the outcome may have changed radically for my dad.

One other thing that I think would have helped my family as a whole... would have been for us all to have gotten counseling... together (or both together and individual). This kind of diagnosis is a huge stressor in your lives, and it's mountains of nasty garbage to deal with. Generally, I think that people need help... even if it's just gentle reminders, to remember that they're not alone, and that they need to deal with these pressures in the most positive way that is possible.

It can't seem like it, but I'm hoping that there's at least one advantage here. From what I know about pancreatic cancer, it's like kidney cancer... most people who have it don't find out until it's begun to present symptoms... and by then it is probably too late. The fact that you've caught it before it manifested itself in any way puts you miles ahead of most patients.

Dealing with grief

Right now, it seems that grief is like... there's this big hole in your life now, and you alternate between being afraid to even look in the hole; for fear of the memories & the loss that live there... and trying to do little things that start to make the hole healthy again.

I can just picture myself standing next to a big hole in the ground with a shovel. I'm too afraid to turn around and look at the hole... but every now and then I throw a shovelful of dirt toward it.

I don't think that it will ever be anything but a hole... but I guess that my greatest hope is to make it something that's part of me & healthy again. Some of the things that I try to throw at it are conversations with my son about his grandpa, or paying a couple dollars more for dinner if those dollars are donated toward cancer research. For me, small (positive) things that truly seem to ease the pain are the ones that go toward healing the hole.

Of course, I also wonder if my experiences with grief are limited to formerly Christian, Buddhism-leaning, humanistic agnostics; and if everyone else has a much easier time of it. After I saw the falling star on (the minute of) the anniversary of dad's passing it made me feel like... yeah... you know, the world might really be a bigger place than just this physical plane. Not that I don't generally feel that way (there has to be more than this), but unfortunately I've got a weakness for evidence and admit that sometimes faith just isn't always enough for me.

A few special responses to our experience with the falling star

As usual, I'll obscure names to respect the privacy of these messages.

Thanks, P. It has now been one year he has been in my thoughts and prayers... the Lakota believe it is very good medicine to pray for those who have gone before us, as I have heard it said. In fact the Lakota believe you only give up your earthly body which belongs to Mother Earth and that your Spirit (the true essence of a person) lives on in the Spirit world only to come back another day. Everything is cycles/never ending circles of love, balance, caring and learning etc. I tend to read a passage from their teachings to start each day at the office...it works for me.

Another of the Lakota beliefs is that a person's wealth is measured not by what they possess but by what one gives away...which is just about the most enlighted thought I can remember in my life. The noblity of people with such a philosophy cannot be denied. Thanks for giving away some of your thoughts of Eric and your mom, we are all the richer for it.

---

My mom sends me messages frequently. As time goes by, you'll be able to read them more and more from your dad. They're particularly evident at times when he'd be interested, or involved or enthusiastic about something going on...and you will soone realize that he will be with you for ever and ever.

Thanks for the poignant story of his first celestial message to you and your mom. I know it came from him.

---

Thank you for the personal note. Your eloquence and consideration in sharing your experience has touched me somewhere special.

I have been thinking about Eric, too. It seems he was always willing to help me with something, when no one else had the brains to do it. I'll bet I have told *my wife* or someone at work "I miss Eric" fifty times this last year. And now I miss him again. We had a wonderful opportunity to know him.

---

P,
This was lovely to read in so many ways.

1) I believe in signs and coincidences and I do think your dad said hello :)
2) I'm glad that you're finding peace in his passing and beautiful ways to cherish his memory. I'm coming up on two years to when I lost my aunt to cancer and sometimes I think it gets harder than easier. Notes like yours remind me that we should all find peace.
3) I sent your msg to my family, I hope that's okay. We get caught up in the little things sometimes and don't cherish the moments we have together. I hope this message means as much to them, as it meant to me.

Thank you for thinking of me. I'm thinking happy thoughts of you and your family!!

Message from Dad?

Sent out this message from my handheld as I was trying to get to sleep early on the 13th. Trying to tell the story of what turned out to be a pretty amazing experience (and work off some insomnia).

Hey all,
I'm just working off a bit of insomnia. It's been exactly one year now, since dad passed away... Midnight this morning (about an hour ago, actually). I drove up to Omaha late this evening... Just to be here with mom. I didn't want her to be alone, and I just needed to be here too.

Once I got here, mom & I went out on her back deck to watch the Perseids. Probably just 3 or 4 minutes before midnight. I just hugged her and we both stared up at the sky, hoping for anything. We never saw anything for a while. I had been out watching earlier, too... & didn't see anything then, either.

Finally, after a few minutes, we both saw a really big beautiful one go right over us. We started crying and joking that it was probably exactly midnight... Mom ran inside and, sure enough, it was exactly midnight. It was too perfect... the minute dad had died last year. I kept laughing to myself... couldn't stop laughing and crying. It was like dad said hi to us... no other way to take it... too perfect of a coincidence. :)

We each only saw one more small meteor, and didn't see the same one together. Mom said that the small ones were private hellos to each of us. I like that idea.

I can't say that I hadn't hoped to see a meteor to signify dad... but this was too cool. Just perfect.

I told dad I loved him... & we just stood there, missing him deeply... and went inside to try to sleep (obviously it's not working for me yet).

Anyhow, just wanted to send out some love... relate the cool experience tonight... err... this morning, and let you know we're hanging in there.
Much love,
-p

Heading home thurs. night & friday to be with mom

I'm planning to head to Omaha late Thursday night, after the kids have gone to sleep to stay with mom.

Friday morning at midnight will have been one year since dad passed away. I'm also planning to take Krispy Kreme up to the 7th floor oncology wing at UNMC hospital. Just a quick thank-you to the incredible staff who helped us so much, for so long. L and the kids will come up and spend Friday night with us after she gets off work. I say I'm going up there for mom, but I need it too. A lot has changed over the past year but at the same time it all seems so fresh. We may be slightly desensitized now... but this week will be a very difficult one.

My brother eric taught me everything

Of course, this is another thing I'm posting without the authors' knowledge or consent... my sincere apologies. As usual, I'll obscure names.

My uncle sent out a message to his friends (below) and also copied me on one of the replies he received. I'm posting both my uncle's message and the response.

i write to you all with a heavy heart....i guess i've been putting it off as some sort of self preservation.....(if i don't e mail my friends it never really happened)....my brother eric went in for a physical every year....(the sensible brother)....three years ago/two weeks after a perfect physical they were taking out his kidney....cancer....they gave him a few weeks to live and wrote him off....he called and was so depressed that there was nothing he could do....i suggested that since he was a computer genius he get on the internet and find a cutting edge project.....(at the time i didn't even own a computer/much less know anything about the internet)......his cancer took him to texas/dc/and back to omaha over a three year period.....last month he tried the newest latest and greatest.... they removed his immune system/induced a coma/kee moe sabied everything/put in my other brother's immune cells/and crossed their fingers/as we all did.....he was slow to respond/but then it looked like it was working/but he knew it was not/he had no immune system/he made the decision to stop the dialysis/the cancer was spreading/his kidney was not working/and he had no function below his neck/he said his goodbyes over the next few days and we told him that we loved him.....on the 12th i told him it was midnight and it looked like a full moon outside his window.....the next night at 11 i was working on my computer novice that i am....i had a bug "blaster32"and wished i had eric to help me....i felt like i had his hand on my shoulder.....i found norton anti virus/loaded it/got the updates one at a time before the bug shut down the computer again and again/i blocked msblasterexe from contacting the mothership/found the extraction tool for said bug/extracted it/found a patch for the firewall/and i patched the firewall/i am a total novice i don't really know what i've just said much less how to do these things.....about 11:50 eric's son called and said it would be over soon....i raced to the hospital knowing it would be midnight soon and he would be gone.....he passed away at midnight/with a bright full moon/mars visible next to it/a beautiful meteor shower/on the 13th/eric's daughter in law had false contractions at midnight......WHAT A WAY TO GO......i believe in reincarnation....i hope little e2 gets some of her grandfather's spirit and talent......i love you all and remember everyday is precious..........my brother eric taught me how to build speaker cabinets and repair microphones when i was only seven or eight years old....ive used those lessons my whole life...there wasn't an instrument he couldn't play....most people are give and take eric was mostly give.........PEACE / LOVE /

Thank you so much for the note, it is an honor to be your friend, thank you for sharing your brother with me. Sometimes over the last years you would share a story about him, and abaout his cancer, as sad as it all was I was glad to be there to listen for you. The same day your brother died, my brother-in-law's mother died, She was 94, and in hospice. Anyhow, it was sad that I couldn't be there for you, but you and your family were in my prayers. My father died when he was 59 of cancer, I still miss him, I know that his life is better, but it is still hard. So I know what your brothers children are going thru, but I haven't lost any of my brothers or sisters yet, so I can only imagine your pain. I will keep you in my prayers, I start my teaching job today, but I will be in to see you soon.
Peace,

Re: EJE: 21 May, 1944 - 13 August, 2003

Another small selection of the responses I received from some incredible people. These were in response to the note sent out to let people know of dad's passing.

P -

I just finished up with a client, saw that there was a message to call your mom, and opened up my e-mail before I called her. There of course was your message with the subject EJE: 21 May, 1944 - 13 August, 2003. My heart stopped for a moment and I thanked God for a peaceful death. I wish I was there to put my arms around all of you, because I can only imagine the emotions that you are all feeling right now. I took a deep breath and dialed your mom's number and we had a nice visit. As hard as this all is, I keep thinking that you all have such fond memories of your Dad, and that finally he is resting with nothing more to worry about. He will never be forgotten by any of us, and I personally embrace what I got know of him and the admiration I felt for the man that he was. Take care of each other and I will see you soon. . my deepest sympathy to all of you.

P,

It was with great regret that I read the passing of my friend this morning.

Eric was blessed with a close and loving family. Please pass our condolences on to S and your sister. All of you have been very courageous through these years and knowing constantly the potential outcome for so long I'm sure doesn't make it any easier.

As a person of your Dad's generation, my views of immortality no longer include physical continuity but rather the intangible attributes one acquires through association and living - integrity, values, love of family, "the appreciation of a night sky", enjoyment of "good humor", etc. . When the qualities of a remarkable person get consciously and subconsciously passed on for generations through love, coaching and good parenting - to my mind the person attains immortality. You will see Eric in your children, grandchildren and those of your sister, the physical likeness is of course genetic but the intangibles will be attributed to your family's love and respect - emulating the same loving guidance provided to both of you.

Our Very Best Regards,

EJE: 21 May, 1944 - 13 August, 2003

This is the message I sent out. Especially difficult because Mom's computer had gotten infected with a worm that caused it to reboot as soon as the machine connected to the network. It took a lot of patience & work to get the email written, addressed, and sent... especially as I was using a web form to access/send mail from Omaha.

This morning, 13 August, at exactly midnight; my father died very peacefully in the hospital. The night was extremely clear, with a full moon, a beautiful meteor shower, and the Earth's closest proximity to Mars in more than 60,000 years. Exactly the kind of night that Dad loved. He would have stayed up watching the sky... marvelling at the red planet and cherishing each of the falling stars.
Dad's own burst of brilliance through this life will be cherished by so many, and he'll be desperately missed.
Thank you all so much,
-p

The inevitable ending, and a mystical night

What a night...
We'd said our goodbyes to dad at the hospital. Mom had considered spending the night, but decided against it. We all went home and got ready for bed. It was after 11:30 PM and Mom had just finished praying & acknowledging/telling dad that it was ok for him to go. I had just finished writing a little bit about dad in my Palm. At the instant I put down my computer (and coincidentally the instant mom laid down), the phone rang. It was dad's nurse saying that his blood pressure had just dropped critically... he probably wouldn't make it through the night.

As we threw on clothes and rushed to the car, Mom got a hold of my sister & helped her get T ready to go (my brother in law was doing rounds in the ER at the hospital, so he was actually already there) and I called dad's sister (who we'd already designated as the one to get the word out to the rest of the family). I also called Nils because he habitually made late-night visits to dad's room, and he would be closer to the hospital than we were.

Nils indeed made it to the hospital faster than we did, and we all had the same infuriating encounter with the night security officer at the desk. I don't think the man could possibly have been less efficient, cooperative, or compassionate. We knew that it could be a matter of minutes until we missed him, and that we'd never get another chance... so the guard's incompetence was a truly sore spot.

When we made it up to the hospital room & met Nils, the nurse, and the doctor, dad had already died. He died (very peacefully) at exactly midnight, actually very shortly after we were called. They assured us that security guard or not, there was no way that we'd have been able to make it in time. I understand that it often happens that way, where people seem to wait to let go until no one is around.

My brother in law, and the rest of the family, met us up at the hospital room not long after we arrived (many complaining about the same guard). :) Considering everything that had happened that night, the time of his passing (I don't know exactly how "time of death" is determined, or if the midnight time might have been chosen somewhat arbitrarily... but I have great faith in the staff who were on duty that night [some of our favorites] and in what they told me), along with the meteor shower, full moon, and the crystalline beauty of the particular night... it truly made me feel like there was something special about dad's passing, and that there is definitely more to it than just an end.

Much of the time in the hospital room was a blur. We spoke to a chaplain, and they offered an autopsy (which we declined), and we hugged and cried a lot. I steeled myself to kiss dad goodbye on his forehead, but I remember it feeling odd... cold and clammy... and not very meaningful. There may have just been too much going on in the room for me, but I remember just not having much interest in being in dad's room... like there just wasn't anything left there for me anymore. I wanted to be there for my family & to comfort everyone, but I was happier just sitting by the window in the hallway, looking up at the stars. I could see Mars, and wishing I could see one of the falling stars.

Eventually, we all hugged our goodbyes... and said goodbye to dad's room, too. We had spend so much time there over the previous 3 months that it was strange to think that it wasn't dad's room anymore. I hoped that the room wouldn't see another tragedy, and that its next occupant would fare much better.

When I got back to the house, I needed to send out a message to everyone. Unfortunately mom only had a windows machine, and it had gotten infected with a worm that forced the machine to reboot every time it connected to the network. I was using a web-based form to send my message, so it probably took about 10 reboots, and a lot of saving & off-line editing, cutting, and pasting. I did finally get the message out.

After I got the message sent, I just went outside and laid down on the driveway. I didn't really cry too much... I'd done that (and would do a lot more). Mostly I just propped my head up and looked at the sky. As the sky brightened to dawn, I headed in... not wanting to wait for the sunrise. Still never got to see a falling star.

Later that morning, L and the kids came from Lincoln, and it was so great to see them. I drove over to the Krispy Kreme to get donuts for the hospital staff. Unfortunately, they were already having a "food day" so I'm afraid that dad's "memorial donuts" probably got lost in the shuffle... but the point was to say thanks.

Re: email update, 10 August

All of the (tons of) responses, to all of the updates I sent out, were incredibly meaningful, personal, and touching. There really aren't words to express how much every one means to me. The following messages are some of those that were among the most powerful. My apologies to those who sent them, as I don't have their permission to share them. I'm torn as to whether to credit the thoughts, or obscure the names. For now, I'll obscure identities.

P- Thanks again for your note...I'm sure it was a tough one to do. This is all very reminiscent of my dad just over a year ago. My dad was so relieved when he didn't have to be poked and prodded etc...and my dad was coherent and could speak easily and he told me he really appreciated when I (as his Power of Attorney for Healthcare) didn't have more procedures done on him...he just wanted to rest, and he did.

Looking back, it was far harder for me and those of us caring for him to stop treatment than it ever was for my dad...he was relieved. He had come to terms with his condition and much like your dad (it seems) became uncharacteristically irritable with nurses and the other wonderful caregivers who constantly tended his needs.

It sounds like your dad (like mine) has come to terms with his condition and is ready for whatever comes next...looking back I think...at least he had the choice, he made it and hard as it may be, because we love them we accept it also.

With a son like you, it is proof he was a great dad and set a good example...his legacy is you and your familly. Tell him you love him as often as you can...he hears you...and wish him the best forever...he goes to a better place as a reward for the life he lived. Your e-mail network/friends etc are all with you and your family!! Celebrate your dad...he deserves it.

Hi P,
I'm truly at a loss for words. I admire your great strength in keeping us, those who care about you and your family, abreast of your dad's condition. I feel blessed to have met your dad :) I can't fathom what you are feeling right now, except to say that a year ago I lost my favorite aunt to ovarian cancer. This was an amazing and gregarious woman who was a positive and humorous force in my life. I was able to spend a few days with her (over Memorial Day ironically) before she left us last September. I got a tremendous amount of peace in holding her hand and talking and laughing with her. (Her condition unfortunately declined significantly after our meeting). She fought valiantly for three years and is with me every day.

I hope that you too find some peace in comfort with your dad. What a tremendous achievement in knowing that he raised such a caring and brave son!

Please take care of yourself; you and your family continue to be in my prayers.

P,

I want to thank you for your willingness to write, your openness to share and the eloquent composure you've conveyed during this difficult time. The status of your father's condition, has kept him in the forefront of our thoughts and prayers. It has brought my own life into focus, and caused me to reevaluate my priorities and reconsider what's important. As I'm sure my Mom has e-mailed you many inspirational quotes, I can't help but throw out one more.

"As we look deeply within, we understand our perfect balance. There is no fear of the cycle of birth, life and death. For when you stand in the present moment, you are timeless. "
- Rodney Yee

While I have been separated from family by distance in miles, the absence has made memories more apparent and love grow stronger. At present I am on my way to Europe; in spirit I'm standing with you in Omaha. From your dad, I learned the value of hard work, the science of investigation and through him I see the genetic connection to my analytic and engineering mindset. Bob Dylan once said, "He not busy being born is busy dying." Perhaps today I am born again; perhaps I'll be a musician. Or perhaps I'm still an overworked, stressed out, sleep deprived engineer who could go no further on a set of preliminary roadway plans without stopping to pause, reflect and say thanks.

With deepest sympathy and utmost hope,

One of the most poignant and powerful photos I've ever taken...

I'm attaching 2 photos to this entry, the first is nice, but it's the second that really gets me. I only wish that I'd had a better camera with me. It truly illustrates the value of camera phones and always having access to a camera. There is no other way that I could have captured or shared this memory, and it's extremely special to me.

The first shot (of 2 here) that I took was of dad holding T and being fully aware of that fact. He was communicating with my sister and mom via smiles, his eyes, and trying to mouth-out/whisper words. In this shot, if I remember correctly, dad was simply expressing his joy that he was holding his grandson... Mom and my sister were basking in his joy.



This is the much more important shot for me, it's mom and dad's first kiss in 3 months, and the last kiss that they ever share. Dad instigated it by looking up at mom and making "kissy-face" at her... puckering and smiling. It was a simple kiss, but one of the most beautiful things I've ever seen.

email update - 10 August, 2003

This is the update that went out to the broad list. A variation of the one I sent out the day before to my small group.

hey all,

On Friday afternoon, we met with Dad's primary Doctors to talk about the results of the scans taken on Wednesday; and Dad's overall condition. Based on the unperturbed growth of his cancer, even while his transplant was functioning, his failed kidney, the loss of his white blood cells, infections, and other complications; they advised us that there were no more medical options that could cure Dad's disease or improve his condition.

Over the past week, Dad has grown increasingly uncooperative and defiant with the nurses when they try to care for him. On Friday morning, he told us that he didn't want assistance (human or technological) to try to communicate. He also indicated that he only wanted to rest.

On Saturday morning, when Mom and my sister asked him if he wanted to continue treatment, he answered clearly, "no."

We've spoken with the staff here at the Med Center, and dialysis has been stopped. The Hospital will do everything possible to make him comfortable, and nature will take its course. It may take as long as a week, but Dad will be completely comfortable, and go very peacefully.

We will be up here at the hospital as much as possible, for as long as he's here. Visitors are certainly welcome.
Dad will be ok. The rest of us... we'll make it through this - together.

Much love,
-p

My nephew & his grandpa

As they spent their days at the hospital, one of mom and my sister's
favorite things to do was to place my nephew on the bed with his
Grandpa. Little T seemed to enjoy it, and they knew that dad deserved
(and certainly relished) every second with his grandson. They spent a
lot of time together that way. T had been born not long after
dad had received his chemotherapy for the stem-cell treatment and was
too sick to make it over to the other hospital. He was exceptionally
proud of his grandkids, and would have hobbled, or even wheeled
himself over to Immanuel Hospital if it was even remotely possible
(and proceeded to tell anyone who would listen). :)



personal journal, 9 Aug, 2003

Tonight may have been the last time we ever get to communicate with Dad. Based on the Doctors' recommendations, Dad's expression of his wishes, and our own feelings and understandings, yesterday was the last day Dad received dialysis, and nature will be allowed to take its course with him.

Without dialysis, he probably won't have many more moments of lucidity.

At Mom's request, I was the one to finally request that support be ended. We went back to Dad's room and had our own & collective breakdowns. I told Dad that we love him (so much), and that we're really going to miss him. I told him that we know that he really loves us. After that, I got an unexpected and welcome reaction... Dad nodded vigorously in agreement... I had really thought he was asleep. I told him that everything we do, he's a part of. Also,on the way out, I told him "thank you."

latest update

An exceptionally difficult time – the following message was sent out to only a few friends... not to the large list that most of the updates had been going to. We'd been able to communicate with Dad, and he clearly indicated that he did not want to continue. Combined with his failing health and worsening cancer, the options had run out.

hey all,
For the last few days, Dad has been fighting the nurses more and more... he doesn't want them to help him. On Friday, the doctors met with us and, based on his kidney, the unperterbed growth of his cancer shown on the CT scans, and his overall condition, advised us that there were really no more medical options that could cure his disease or improve his condition.
Also on Friday, we were able to communicate with Dad enough for him to tell us that all he wanted to do was rest. This morning (Saturday), when asked if he wanted to continue treatment, he answered clearly, "no."
We've seen it coming for a long time, but it's "real" now. Dialysis will stop, and nature will take its course. The hospital will only make sure that he's comfortable.
It may take as long as a week, but he should be completely comfortable, and go very peacefully.
I'll be in Omaha until it happens, unless I'm needed for something in Lincoln, and then I'll need to be around to make funeral arrangements & to help Mom out.
I'll send out something to my larger list once the rest of Dad's family knows... but just wanted to get this out.
I've got minimal access to email, but you can reach my cell.
take care,
-p

email update - 8 August

By this time, Dad was actually much less swollen, and starting to look pretty decent. While we couldn't understand most of what he was saying, he was very communicative, and even expressing emotions. Unfortunately, things were crashing too. Sometimes I wonder if the more consciousness he attained, the more he realized that his situation was untenable, and he started to let things go...

Hi all,
Difficult news this time.
Dad is pretty conscious and is trying to communicate, although he is still unable to move any muscles below his neck. With the tracheotomy & ventilator, he's able to try to talk but unable to make any sound.
Dad's white blood cell count was as high as 17.0 for a little while, but it has dropped back down to 0.3 currently. His kidney is still not functioning.
As he was finally in good enough condition, the night before last the hospital was able to take scans and look at his cancer. Unfortunately, the preliminary results of the scans have shown that there is very significant growth of tissue in his lungs. We're waiting for more comprehensive results, but so far it appears that the stem cell transplant was not successful. If this is the case, especially considering his current condition after the transplant, it certainly changes his prognosis.
I'll try to send another update soon, when we've got new information.
take care,
-p

Scans reveal significant and unperturbed tumor growth in dad's lungs

When mom called me at work with the news, initially, it sounded like the growth was massive. Turns out that it wasn't all that massive, but the fact that had grown at all was extremely significant.

It meant that in spite of everything dad had endured, the stem cell transplant had failed to produce any results, and excercise in futility. There was still a chance that the transplant might still produce a delayed effect on the cancer, the chance dwindled with every day. Considering all of the damage done to dad's body & everything else he'd have to recover from (even if the cancer did get better), it was pretty grim.

What dad actually looked like during his time in the hospital

Graphic photo of dad when he was looking pretty bad.
I won't embed the graphic in this page, so you have the option not to look at it.

This photo is really hard for me to look at, but I took it because I really wanted to remember the reality and the gravity of dad's condition. I also took it out of hope... because I knew that if dad ever made it out & recovered, he'd be really interested to see what he actually went through (of course, he really disliked looking at photos of himself when he looked good, let alone something like this... so he'd probably only check it out once). :)

You'll see that he has a washcloth on his forehead for his fever, and his whole body is very swollen (edema), especially his lips, neck, etc. the whites of his eyes are red and swollen (they called these "blebs" and said that it happens when someone is on a ventillator for a long time). I can't remember whether the tube in his nose is feeding, or a drain, and you see the ventillator going into his mouth. His skin was very sticky, I think they said that it was his body trying to get rid of toxins.

View the photo

email update - 22 July

I hadn't sent any updates out in a while... it had been difficult to do so. Emotionally difficult, but also... there just wasn't too much to tell. This update was spurred by a query from one of dad's friends at work, and I took advantage of the situation to try to cheer mom up & salvage her birthday.

Hi everyone,
My apologies for not sending out an update lately... things have been so tentative, it's been more difficult than usual. We'll get bad news in the morning, and by that afternoon, it will be better; the next morning will be good but things go badly after that... and so on. Very hard to know what to say.

Although no one can explain it medically, dad is still here and fighting toward recovery. He is still on the ventilator (he'll have a tracheostomy done in the morning), and is unable to do anything other than open his eyes and look around once in a while; but he's making more progress every day. The only really critical factor right now is his kidney, it doesn't show any sign of recovery (although the renal doctors remain optimistic). Toxins that his kidney can't clean out are probably the factor keeping him from being more conscious, and he may also face dialysis for the rest of his life. His other organs are doing ok, but his kidney (and his suppressed consciousness) has put everything else into the background.

Once Dad regains consciousness, I understand that the first goal will be to wean him off of the ventilator. Shortly after that, he will need to begin physical therapy. More than a month of complete inactivity, compounded by the steroids in his system, has taken most of his muscle mass. It will be a lot of work to get anything back (but the physical therapists are optimistic that it will only be a few weeks).

All that being said, he's still in the game, and fighting for everything he's got (he definitely wouldn't be here if he wasn't). He has always loved proving doctors wrong, and he's completely ignoring all of the odds against him. :)

Dad was diagnosed with cancer almost exactly 3 years ago. That diagnosis, and all of the heartache and roller-coaster to follow, has taught our family (scored into us) how fragile and precious life is. It's taken Dad's struggle of the past few weeks to finally show me that there is more strength packed into people than anyone realizes, and I think that strength is especially magnified when they've got help. :) The recent struggle has also illustrated to me that there are definitely things worse than death. Seems simple, but hard to get through my thick skull some times.

I'd like to close with a special request (that my Mom will probably slap me for). Wednesday, July 23rd is my Mom's birthday. I won't be able to see her, I'll be here in Lincoln, and she'll probably try to spend the day up in Dad's hospital room (like any other day). If you feel at all inclined, please tell her "hi," or send a flower, or even take her out to lunch or something.

Many thanks and much love,
-p

Eric the great

This one was interesting... with most of the updates, they were just personal messages meant as broad updates – this one was a single reply to a question. With this message, I was stepping outside the personal updates... into a more "family spokesperson" role because I wanted to address the specific questions & at the same time jump on some expectations that I felt were starting to spiral out of control at the time, especially around certain factors like dad's white bloodcell count. On the other hand, some of it was also a very personal reaction... I was feeling very much "out of control" of the situation, so it was really important to me to manage expectations as well as possible, and keep everything as grounded as possible.

The text of the question is quoted at the bottom of the message:

It's difficult to contrast dad's coma to the coma that Karen endured. Karen's coma was induced by trauma; while dad was originally put into a drug-induced coma. Since the conditions of Karen's coma were not controlled, and were more dependent upon the injuries to her head, it was more of a waiting game to see improvement in her condition.

In dad's case, theoretically, his coma was a controlled state. When the drugs that induced the coma (Versed) were removed, we would hope to see a strong improvement. Since the improvement has been a little more slow than expected in Dad's case, there is just some slight concern that there may have been some more damage done to dad's brain while he was under the sedative, and that it might be slowing his recovery. He's probably ok, but it is important to be cautious & concerned about lesions or some other injury to his brain.

I'm certainly not discouraged in any way. On the other hand, I do believe that it's important to manage expectations and to be cautiously optimistic. It's dangerous to focus too much on any one factor, like his white blood cell count, when there are so many delicate and inter-related systems in the body.

If I sound like I'm discouraged, then it's probably only to discourage anyone from being overly optimistic – only to be emotionally crushed later, if things were to crash again. Dad is finally inching along in the right direction (and we couldn't be happier) ...but there is a very long way to go, and a fragile balance to maintain in order to get there.

I'm all for hope, and enthusiasm; and i couldn't be happier about dad's current state... but if dad's condition deteriorates again, I don't want people to think "where did this come from? what happened?" while he still has so far to go.

Dad has been surviving for 3 years now, but it's not just survival that was his goal in undertaking this endeavor. He wants to be able to get down on the floor and play with his grandchildren, or even play golf again. Survival is good, but it's not the only goal... his overall quality of life needs to improve. :)

Many thanks for everything,
-p

__________________________________________________

On Saturday, 12 July, 2003, at 23:46PM:

Dear P,

I believe that as long as Eric is alive, there is hope. Mom's message to me sounded like you were kind of discouraged because Eric had not come out of the coma yet. Mom told me it took Karen about a month to come out of her coma. My feeling is that I hope he stays in a coma until it is less painful to come back. With all these sores - why not let him stay in a coma and heal up a lot of lthe sores, and THEN come back. He is still alive. Let God have it the best way. If he is not to come back, which I still think he does have a chance, let it be as pain free as possible.
Love,

email update - 08 July, 2003

By this point, we were really feeling how powerless we were.
The whole process was amazing... the medical team was doing absolutely everything they could to keep Dad going... if a machine was needed, plug it in... if a drug was needed, plug it in. It was interesting because it really demonstrated (for me) how well medical technology had progressed – at least as far as supplementing the mechanical processes of the body... but it also drove home the fact that the psychological & spiritual part of a human being... the part that makes them actually human... is still largely a crapshoot.

Hi everyone,
I'm sorry I haven't sent out a message lately... it's been difficult to know what to say in terms of "update."

Things are very much "in the moment" in dad's hospital room. You get into a rhythm of watching the numbers on the various monitors and obsessing about the beeps and alarms - and any of the smallest of things. While he rests (still sedated), a machine is breathing for my dad. Another is doing the work that his kidney should be doing. Drugs are in place to keep his blood pressure up, regulate his pain, fight any infections, and both support and suppress his new immune system.

A pageant of medical personnel take care of him... both physically and, as much as they can, emotionally. Planning for any possibility they can, and caring for any need that presents itself. For his physical state, there isn't that much that we can do, other than sit... and wait... and watch... and worry... and most of all do that which the machines can't do. Care.

So we care, and we love him, and we hope, and we pray, and we tear out our hair and stomp the floor with frustration. It doesn't matter if you're in the same room with him, or on the other side of the world... if your thoughts or your prayers are with him, you're a huge part of the caring part. We can't thank you enough, and you're doing more good than you think.

Dad is "as sick as a human being can be, but he's holding steady there." Over the past week, he has been on 5 different antibiotics, and there doesn't seem to be current evidence of infection. On the other hand, he's been spiking mysterious fevers. Last night his fever reached 104. His lungs are in pretty good shape, but he's not breathing on his own; his heart is pretty healthy, but he is still on some (and has been on a lot of) medicine to keep his blood pressure up. His liver is currently ok, but his kidney has failed. Everything is in a delicate balance right now, and it's currently up to Dad and God whether he'll come back.

Thank you for all of your kind words, love, and care.

Take care,
-p

email update - 01 July, 2003

This one was during an especially difficult time... July 1 is my son's birthday, and he turned 3 on that day. For me, it serves as a reminder of how much we lost during the summer of 2003. We didn't just lose Dad, there was also so much life that we had to let flow by without us. My heart really goes out to anyone dealing with this sort of thing now.
Dad's condition had begun to destabilize, and he'd developed an infection. I remember that it was a really terrifying weekend.

Hi everyone,

Again, this is an incomplete address listing, so please feel free to pass this information along if you need to.

First off I would like to, again, mention the amazing level of care that my dad is receiving at UNMC hospital in Omaha. I have met so many amazing people... from the nurses that care for him and watch over him every hour of every day, to the Physicians' Assistants who oversee the daily operations on his wing, to the Pulmonary Specialists, Renal Specialists, Infectious Disease Specialists, Oncology Specialists, and every other sort of medical expert and piece of technology employed to keep dad ticking. I'm in awe of the care, concern, and attention that my father is receiving.

The weekend was not good.

Dad's kidney function has dropped way down. He still has no immune system to speak of (it is currently 0.1; while on the scale that UNMC uses, a healthy immune system is from around 4.0 to 11.0), and he has developed an infection in his blood... Staphylococcus Epidermis bacteria – common to our skin & mucous membranes, but especially dangerous to someone in dad's condition. The infection caused him to run a fever, and his blood pressure dropped severely. He was given Dopamine to raise his blood pressure and he started a new antibiotic to fight the infection. Also over the weekend, he was not breathing over the ventilator, and was having problems with his left lung.

On Monday afternoon (he's been in a "drug-induced coma" since the previous Monday when he was intubated), Dad started an "ongoing" dialysis to help out his kidney, and remove the toxins from his blood. They had also cut his Versed (sedation drug) and Morphine to see if he was still able to wake up.

On Tuesday morning at 7:45 Dad choked a little as they were suctioning his vent. He also tried to blink his eyes... he's still in there! :) He's back on the Versed and Morphine (sedated), and the dialysis is really helping to clear the toxins out of his blood. He still has fevers and the staph infection, but he is breathing over the ventilator and is no longer on Dopamine, as his blood pressure has regulated. The ulcers in his mouth are healing up, and he's not taking very much in the way of blood products. He is still very bloated and is not very pretty to look at. ;)

This evening, as his brother Nils visited him, Dad's eyes teared up when Nils told him that he loved him. :)

Dad still has a long way to go. He has no immune system yet, and has yet to deal with graft vs. host disease (nor has he been able to have much in the way of anti-rejection drugs because of his poor kidney function). There is also the staph infection to beat (let alone the cancer), but his status has markedly improved since the weekend and he has a better chance now.

Thank you all for your care and support, and please know that we're thinking of you.
Take care,
-p

Dad's white blood cell count hit 0.1!

Doesn't sound like much, but it's a huge improvement over 0.0! Now just hundreds to go. :)

First update sent out after dad's stem cell treatment went badly

I thought it may be good to preserve these for later reflection. This was the first update sent out to try to let everyone who cared know what was going on, and be as involved in the process as possible. The main focus was to keep things as upbeat and positive as possible, while still being completely realistic & not establishing any false expectations.

Hi everyone,
I've got a very incomplete listing of addresses to whom this message should be sent... most of the addresses have been gleaned from old messages that my dad has sent out. Feel free to forward if necessary.
There's a lot going on... just wanted to send out an update about my dad, Eric. Monday was a very rough day, but things have stabilized now. He is receiving excellent care at UNMC hospital in Omaha. The staff are wonderful. I'm back in Lincoln at the moment, but based on the individuals I've met who are caring for my dad, I can feel very comfortable saying that he's in exceptional hands.
Dad received a stem-cell transplant on Tuesday, 10 June, to combat the Kidney Cancer he's been struggling against for nearly 3 years now. He is currently (as of Monday afternoon) on a ventilator, and under sedation. The ventilator is primarily for comfort; he's still mostly breathing on his own, which is very good. His lungs are still ok.
The chemotherapy agents that prepared his body for his new immune system were causing him to suffer very badly. Sedation and the ventilator were the best, if not the only, chance for dad to get rest and a chance to recuperate.
His remaining kidney (one kidney was removed 3 years ago with his first surgery to remove the tumor) is not, currently, able to deal with the level of toxins and fluids in his body, so he is very swollen, and the doctors are very concerned about edema in his brain. If his kidney doesn't step up to the challenge, they will need to do dialysis to clean out his system and protect his brain. The situation is being monitored closely, and the dialysis is a good option that should do the trick if it is deemed necessary.
Other major concern is that, normally (in a stem-cell transplant of this type), the window for the grafted immune system to kick in and start producing white blood cells is from 11-14 days after the transplant. Dad is now on the late side of that window, and the new immune system still hasn't become active. It is very rare for the grafted immune system to completely fail to produce anything, so it is most likely that dad is a bit of a late-bloomer.
As of Monday afternoon, he's finally somewhere near "comfortable." He will remain sedated until his situation improves. We're waiting on a lot of things, but currently are in a somewhat stable holding pattern... and just exceptionally glad that he's in a place where we can "hold" somewhat peacefully for a bit. We're all holding up as well as can be expected, and playing the waiting game.
That's about all right now... feel free to check with me if you've any questions. I'll do my best to answer or take care of anything. Positive thoughts and prayers are, of course, deeply appreciated (please, however, don't send flowers... they can not go in his room while he has no immune system).
take care,
-p

Put dad under sedation and on ventilator

This entry starts with the note I wrote to myself in my Palm. I've never seen someone in such pain before, and I hope that I never have to again.

His mouth was just a huge ulcer... writhing in pain; angry and frustrated that he couldn't communicate with us - and probably a bit confused as well... either by the pain or by the edema in his brain.

Finally achieved some peace... after he had the breathing tube and Versed (sedation drug).

Hopefully the sleep (and peace) will give him more tools to fight it & get the new immune system to start up.

God... what a barbaric process. :(

My poor dad... I think that this day will haunt me for the rest of my life. I can't imagine the amount of pain he was in, before we agreed to have him sedated. It was like something had exploded in his mouth... it looked like bloody hamburger with teeth. He was writhing and contorting and confused... and he just kept saying "something's wrong... something's gone wrong." He was telling us other things, but we couldn't understand him.

I feel a lot of guilt about that day... intellectually, I know that he couldn't have gone on like he was – talk about inhuman torture. On the other hand, you just have to wonder... what if we hadn't sedated him, would he have been able to recover, then? Did we sedate him just because we couldn't stand to see him suffer the way that he was? Was it just to make it easier on us?

Stem cell match found

Wow, turns out that dad's youngest brother is an exact match for a stem-cell transplant therapy. Also, insurance approved the treatment. Guess this means that it's real.

Not sure what this means... I guess that it's good. I mean... to be brutally honest, it may either kill him or fix the cancer. Either way, he doesn't have to continue the slow slide he's been on. Ugh... not to be flippant about it. I'm just terrified & hopeful at the same time.

Dad's latest treatment has officially failed

Dr. Amato has recommended he test his siblings for an exact stem cell match, and do a stem-cell replacement therapy.

Scary stuff. :(

New scans, new growth

Dad's tumors have grown, now we have to look for a new protocol. Broke down and cried... L's family even saw me blubbering. I hate what this does to everyone involved.

Embolization of hip tumor

They embolized the tumor in dad's hip today. Everything seemed to go well (of course, it always seems to go well at first). Fingers crossed!!

They put in a porta-cath yesterday for chemo... hopefully that will make things easier.

A ray of hope

a ray of hope... it's not that there's been any progress against Dad's disease itself, but he's finally actually calling around and considering alternatives... and most importantly, just not taking what they are giving him without looking into alternatives. I certainly don't have any delusions about some miracle cure being out there, or about Dad's current doctors being uncaring or incompetent, but I consider his current mood & activities to be a strong victory... because it means that he's starting to come to terms with his condition, & taking some responsibility for his life (and his care) into his own hands, which is very empowering & positive. I've been seeing him feeling so isolated & help/hopeless... I hope that he can now start to feel more alive - for however much time he has left. It kills me to think that this cancer could beat him & take his life without even killing him... but I can see it happening, or starting to happen; and maybe this is a small turnaround.

MRI scans - bone met

Dad just got his MRI scan results back today. He has a very small bone met in the marrow of his hip. It's been hurting him for a long time... I think it may even have been there before we knew about his kidney.

It's absolutely terrifying, demoralizing, sad... you name it, we're all feeling it. Dad seems to be handling it it well... from what I heard, Mom, not quite so good. I'm mixed. It wasn't a big surprise, but in this case I definitely would have preferred a surprise. Bursitis, arthritis, anything other than more cancer. On the other hand, it was so small that it didn't show up on x-ray, only MRI, so, especially if this has been there since before everything started... it's not such a terrible thing. Bad, but not as absolutely awful as it could be.

Dad & I played 9 holes of golf at Highlands on Saturday. It was a little windy, and not the best round Dad has ever played... but we had a very good time together, and it sure meant a lot to me. I guess I.m just desperately hoping that he's got a lot more golf ahead of him.