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9/22/03 - Monday

It's Jen tonight, actually I'm speaking tonight for both Joel and myself.  First, know that he is quite comfortable.  His pain seems to have reached a plateau and while it took a few days, we have the right combo of meds at the right dose to manage it.  It's an art, not a science and it's not easy.  Secondly, the reason we have not been updating more frequently is that the experiences we are having are too intimate and personal to share, both physically and emotionally/spiritually.  Joel and I talked about his journal today and while it has always been an outward expression - his way of reaching out and getting things out in the open, he is now feeling the need to focus in a different direction.  Right now, our circle needs to be very small and tight and inwardly focused.  I don't know if that makes sense or not.  I hope everyone understands.

Please do check in periodically.  If things change, Joel, myself, or someone will be updating the journal.  We ask that you continue to pray for God's healing touch on Joel, strength and endurance for me and for Joel's family, and for love, peace, faith and hope.

Good night.

9/19/03 - Friday

John here, I'm Jennifer's brother.  Jen is pretty much wiped out right now.  She is going thru a lot, and things are not getting any easier.  At the same time, the demands of "regular" life don't seem to let up.  Insurance issues have to be handled, groceries have to be bought, cats have to be fed, loads of laundry folded and put away.  Friends and family can help, but there is only so much they can really do.

The main concern now seems to be managing Joel's pain.  It seems like it gets worse by the hour.  It will seem to yield to the meds for a while, and then it will flare up, and once that happens it is hard to get Joel any relief.  Also concerning us now is his caloric intake.  He is pretty much on an all-liquid diet.  Anything in the least bit solid, no matter how soft, seems to be out of the question.  

In addition to the daily miracles she has been performing, Jen has spent the last few days arranging for hospice care.  After a few initial problems (is there no rest for the weary?), I think she's arrived at a situation that we all feel is in the best interest of Joel.

Joel is a very strong person, and when he was diagnosed, very vital and full of life.  The hospice nurses who have been here have remarked that they have never seen someone on so much narcotic medication.  Because they've said this, we wonder if Joel's strength might actually be hurting him at this point.   I will not sugar-coat anything for those of you who have been kind and interested enough in Joel to follow this.  He is suffering greatly right now.  That said, the last few days have not been without their wondrous moments.  I am not much of a Bible reader, but Joel's faith is very strong, and he has taken much comfort the last few days when people visiting with him will read passages to him from the Good Book.  So today when he and I had a little quiet time, I asked if he wanted to hear me read something to him.  Sure, he said, I'm kind of into the Psalms these days.  So I am thumbing thru the Old Testament -- thinking, sheesh, I have no idea what Psalm I should read to him, how many are there, about 500? -- when Jennifer walks in with the day's mail, and unfolds an enormous (32" x 24") poster.  It was hand drawn and signed by kids at the school associated with the church that Jen & Joel attend.  It said, in part, "We are praying for you.  Our prayer is that the Lord brings you peace and comfort."  It was very touching to see this, and when she unfolded it for Joel, there wasn't a dry eye in the room.  At the bottom was a marking, "Isaiah 41:10", so that is what I read to him.  We are all touched by this outpouring of support we have received from friends, family, and strangers.  His church has supported him.  The Coast Guard has supported him.  The people at the Cleveland Clinic -- Dr. Niederman, Nicole, Joanne, and many others -- have been nothing short of miraculously helpful and compassionate.

9/15/03 - Monday

Still Jen...the weekend was more of the same.  Joel continues to struggle with pain and we are desperately trying to get the right combination of medications.  It seems to me that as soon as the dose is increased, the pain has already increased beyond the control of the new dose (it takes 12 to 15 hours for the pain patch medicine to start working), and he's relying on the break through medicine more and more.  I think he's finally on a high enough dose of the patch that should keep his break through pain less frequent and reduce the need for morphine which just knocks him out.  (It also gives him very vivid and strange dreams that he sometimes believes are still occurring even after he wakes up...but that's a story for him to tell.) 

We did get blood tests results today and the liver function is much worse.  It's still not quite as bad as August 15th, but getting closer and closer.  Today is the first day I noticed Joel's eyes and skin have a yellow tinge.  This is because the liver is not eliminating the by products of the break down of hemoglobin.  Speaking of hemoglobin, the transfusion did not do much to bring his counts up.  The doctor says his body most likely rejected about half of the red cells that were infused.  So, even though he got two units, he only got the benefit of one.  

I know this all sounds negative, but let me just share some of the small miracles that have happened.  We were visited by a special couple from our church last night.  They are new friends, but we feel as though we've known them for a long time.  We spent some time watching the BUCKS lose in OT (they are big fans), then we ended the night in prayer.  If you've never taken the opportunity to pray with friends or people you care about or have a need in their life, I highly recommend it.  To grasp hands, close the eyes and speak to God from your heart on someone's behalf is very powerful.  Joel and I have been on the receiving end of this kind of prayer a lot lately and it has kept us strong in some difficult times.

We also had the opportunity to connect with a neighbor that we had never met.  Just by chance, he was walking by our house when Joel was outside rinsing off his car (yeah, can you believe it?), getting it cleaned up and eady to sell.  They happened to say hello to each other which can be rare in itself in this day and age, and Joel went on to ask if he knew anybody interested in buying a Camry.  Well, long story short, Joel gave him the cancer/recent retirement story and this nice man was kind enough to take the information to put up at his work.  Next day we find a card in our box from he and his wife saying that as he walked in the house that day with Joel's car and contact info, she had just been trying to access Joel's web site!!!!  Turns out, a dear friend and cancer warrioress is a mutual friend and had passed along Joel's web site.  Things happen for a reason, and I hope we'll have another couple as new friends soon.  

Then, as if that was not enough, Nicole came by (she's our nurse from the Cleveland Clinic) and just hung out with us for awhile just on her own free time, as if she has any to spare.  She did a quick check on Joel and then passed it along to our doctor.  She even let me show her my photo album consisting of all my favorite cat photos, which is every photo we've ever taken of the varmints.  She's a true friend...more than friend, family. 

Then we get a visit from Dr. Broke the Mold when they Made Him Niederman.  He wanted to talk about how things were going and how he thought Joel's care would be handled now.  He of course had to give us bad news that the liver was too sick to handle continuing with methotrexate and that since Joel was no longer receiving aggressive treatment that we could consider switching from home health care to hospice.  We all know the connotation that goes along with hospice...end of life care, right.  Well, Dr Niederman really dispelled that as a misconception about hospice.  It's just a higher level of care that doesn't require the patient or family to jump through logistical hoops to get things done for the patient.  What this means to me is that I don't have to drive to "crack town" to find a pharmacy that stocks liquid morphine (which I did do) and it means for Joel that if he is in pain that is not being controlled, he does not have to wait for me to call the doctor, then the doctor has to write a prescription, then I have to go pick it up, drop it off in crack town and by the time I get it home, Joel is in excruciating pain for about 8 hours or so.  With hospice, he says if you need pain control, they bring it right to you any time of the day or night very quickly.  If Joel improves a lot and no longer needs that, then he can go back to home health care once a week.  We think it's a win-win situation and we'll probably give it a shot.  If we don't like it, we can always try something else.   

In Joel's typical frank way, he asked Dr. Niederman where we were at medically and Dr. Niederman said we were at the prayer stage.  There was nothing medically he could do that would not cause Joel further discomfort or damage.  I think Dr. Niederman called Joel from his car after he left our house and they shared a very personal conversation that was very uplifting for Joel and I'll leave that for him to share at some point if he wants.

So this is where we stand tonight.  Joel continues to choose life.  He is in God's hands as always and feels at peace.  He's loved and supported by family and friends more than he could ever imagine.  We continue to be shown the goodness that exists in people on this earth.  

9/12/03 - Friday

Joel has had a very rough week, so it's me again giving the play by play.  My brother John came down on Tuesday and went with us to the transfusion on Wednesday.  It went fine, but it takes all day to infuse two units of blood.  Solid foods are not going down the pipe at all and liquids are very sluggish.  This is not good.  Trying to get 2000 calories in someone who is sick, in pain, has no appetite, can't eat...well, you get the picture.  So far, the transfusion does not seem to have helped his energy level at all.  There may be other things going on that are making him feel sick, like liver dysfunction (we're guessing there is trouble in the liver again because of orange urine).  We've had to increase the pain medication again and that makes him feel groggy as well.  We had a visit from home health care nurse (Roger).  He took blood for liver function tests and CBC which we will get on Monday.  Pray that things are not as they seem!

That's about our week in a nutshell.  We visited the Veterans Admin and social security office to apply for disability benefits earlier in the week when Joel was feeling a little better.  These applications have to go before a medical board and take 4 months to determine if he's truly disabled and then there is a 6 month waiting period before you actually get any benefits.  There is something wrong with the system!  

Joel's parents are coming in tomorrow for a few days.  It's a good thing too, because I have been fired as head chef at Joel's diner.  Apparently he did not appreciate the organic flax oil I tried to sneak in his strawberry boost.  But hey, I had to try...it's 100 calories per tablespoon and rich in Omega 3, 6, and 9.  Hopefully they will have better luck getting calories in him than I have!  

9/8/03 - Monday

It's Jen again.  I've relieved Joel temporarily of his journal duties.  He caused major panic by waiting a whole week between entries.  That and he just has not been feeling well all week.  We did get blood work back today.  It was actually pretty decent.  The four parameters that indicate liver function came back a little worse than last time, but not critical and not as bad as Aug 15th.  Three of the four numbers are elevated just a little above normal range.  We see this as a small victory in the battle being fought here.  It's a spiritual battle as much as a physical one.  Basically, I think these tests tell us that his liver is under stress, but it is doing it's job to an adequate degree.  So, that gave the 'all systems go' to start a chemo drug called methotrexate in pill form.  Joel took the first one tonight and he takes one in the morning, then the last one tomorrow night, then repeats the cycle once every week.  The doctor will evaluate the drugs effectiveness by monitoring pain, weight and probably blood work/liver function.  We have no idea how long it will take to get results because I don't think there is a lot of experience with using this drug in pill form as a single agent in stomach cancer.  In fact, Joel may be the first to live long enough to get the opportunity to try it.  Another victory for the good guys!

One problem that we have to deal with right away is that Joel's hemoglobin has not come up at all since the last chemo.  Two shots of procrit should have had some positive effect by now, but no such luck.  He's really been having a difficult time getting out of bed.  So, our Wednesday will be spent getting a blood transfusion.  This explains the extreme fatigue that has not improved since the last chemo.  I'm not exactly sure why the hemoglobin has stayed low.  In the past, it has gotten low, but come right back up on it's own after chemo or with procrit shots.  This time it's behaving differently.  We're praying that the transfusion gives him some energy.   

My heart is breaking because his physical quality of life is non existent right now.  Spiritually, he's experiencing the highest 'highs' of his life.  He spends most of his time in a one on one conversation with God, reading the Bible, listening to praise and worship music or scriptures on tape.  He is so on track right now.  Pastor Bob used an excellent analogy to explain it.  He said it's like when your small child has to go to the bathroom and they don't know where it is.  As a Dad, you can either tell them how to find it, which is ok, but the child still might make a wrong turn along the way.  Or, you can just scoop your child up in your arms or up on your shoulders and go along with.  I think Joel is at the point in his spiritual walk that his heavenly Dad is not just telling him which path to follow, but is with him every step of the way.  It' such a comforting thought.

In other news, the pain is worse.  Joel is on a bigger dose of  the pain patch to control chronic abdominal pain and he takes morphine liquid when that nasty liver lesion gives him trouble.  On the weight front, things are frustrating.  He has NO appetite at all.  Some things make him gag.  I never know what will work at any given time.  Today solid food was getting stuck, so he's pretty much back on liquids.  I'm concerned that he'll lose the five pounds he just gained back.  Our doctor prescribed an appetite stimulant that Joel started on today.  It's supposed to start working within 2-4 hours, but no luck so far.  He said he'd be willing to give it a week or so to work before giving up on it.  Looks like I'm back in the jello business for awhile.  

I told Joel I would update the journal for him tonight and he told me to make sure I made it very brief...we have to be in the clinic very early for his blood type and cross...you can see that I generally don't do well with 'brief'.  

9/7 - Sunday

Sorry the updates have been a bit more sporadic recently.  Pain management is the issue of the day.  While I draw closer to God through this ordeal, I also become more aware of my tolerance for pain and what role medicines play in helping me management that.  Abdominal pain has required two forms of pain medicine - one for low-grade or "chronic" pain and another for pain spikes for what they call "break-through" pain.  They both cause varying degrees of drowsiness, nausea and other side-effects associated with them.  I am trying to remain strong, but you need to take the medication to get a good nights sleep and to eat to get well.  Pain management is part of that.  Its strange to talk about it.  But sometimes its when things look the darkest that God shows up the biggest.

Our doctor has been amazing through these recent few weeks.  He's understanding and knows how to help us handle things.  We had labs run on Friday and will get an update on liver/kidney function from him on Monday, 9/8. 

We've also shared intimate moments with our church's Senior Pastor Bob Coy, sharing a phone conversation that was very encouraging, and also visiting with him following church on Saturday night.  Prayer is an amazing, powerful thing.  We continue to believe I'm a walking miracle.  Pat and Joyce from the Hospital Ministry have also been checking in with us...offering prayers and support.  What a gift - thanks, guys!

Your many prayers sustain Jennifer and I....thanks.  More news as the week rolls on.  Make each day count.  Say I love you to your family today.