Hope is the thing...

It seems odd to start thinking ahead beyond this week's appointments, but it is time to start counting down toward Day 100 and there is a lot to do before John is released from care here.

John's Prednisone tapering is almost over and the GVHD symptoms seem to be mostly at bay. The CMV appears to be gone and he will switch to the pill form of Ganciclovir today. (The doctor commented this week on how "few" pills John takes. My guess is it is about 30 a day.) The urinary infection he has had turns out to be viral, which he contracted despite two forms of anti-viral medication. It appears to be improving though.

John still receives a liter of fluids a day by portable pump through his Hickman line. He needs to begin keeping up his fluids and maintaining his magnesium level on his own. I guess he will probably return to Atlanta with his Hickman line still in his chest as a precaution, but that hasn't been decided yet. It is annoying, but much easier to use than finding a vein several times a week.

John will have his "80 Day Workup" on about Day 84 - August 18. That will involve another bone marrow biopsy to check for any blast cells, which would hint at a recurrence of Leukemia. They will also do a lot of other tests for chronic, long-term GVHD problems that surface around that time. If all goes well, John should be released back into Emory's care by August 31, three days before Day 100.

Debbie will go back to Atlanta mid-August and will get the house ready for John again. Now that is a project I hate to think about. I will take care of moving out here, returning the car and furniture, paying bills and shipping our things back. It's no wonder I haven't wanted to look ahead.

John's been out and more active this week with Annie around as company, although he tires by day's end. Debbie put in a lot of hours this week on the release to the media of an ABA study she has worked on for a year. She will be at the ABA convention and will host one of the big awards luncheons next week. I've always attended to serve as the supportive, arm-candy spouse by her side, but she will be on her own this time.

The weather is clear and "hot" here, if the low 80s is hot. Debbie and I may do a bit of kayaking today after I spend some time "in the office" here on a project or two.

The slightest thing seems to make our perception of how full John's glass is these days to fearing it may be leaking. We think, and hope, he has a bladder infection. He has been on Cipro since Monday and seems a bit better. If the Cipro doesn't work, he could have something called
Hemoragic Systitis", which I believe is where the chemotherapy ends up burning the urinary tract as it passed. That would be a bad thing.

The cloudy area in his chest from the x-ray proved, via CAT scan, to be nothing. The pain in his neck that he has been having (I could say something here) turns out to be thrombosis in surface veins - basically kind of a bruise.

He is handling the taper from the prednisone well, both as to GVHD and withdrawals. So, all in all, he is holding his own and getting better every day.

Annie Schwarz has come to visit for a time, along with John's mom. They walked a bit today and it wore him out, but the change in company will be good for him. Debbie and I took the opportunity to sail on the lake for a couple of hours toward sunset and then had a dinner of salmon sitting by the water. There are races on nearby Lake Washington on Tuesday afternoons and the boats came back in as we were finishing our sail. The racers engaged in an hour or so of "Duck and Dive" on Lake Union. Basically, there were 50 or so sailboats going in every direction, yelling if they had the right of way and ducking if they did not. It was a beautiful ballet on water from the shore, but to a sailor it feels being a duck in a shooting gallery.

I believe today is Day 60 since the transplant, though counting is an oddly inexact science, there being two Day 1's and such and Sunday turning to Monday as I write. However and still, I am back in Seattle after a work-week away, and Atlanta proved not to be home with so much of my reasons for being elsewhere.

In my absence, the house had grown to look much like Boo Radley's two doors down-dark, dank and quite neglected. I spent several evenings clearing away dead and unwanted growth and a few hours replacing the dryer and fixing the alarm. It was homework, but it wasn't home because those it was for were elsewhere.

It was rewarding to be back in the office and at work, and I'm grateful for that time and for the genuine kindness they shared. Lawyers are not ever at a loss for words, but more than once I found the lump in my throat in the way of words I couldn't find.

Courtney and I shared lunch one day during the week. She has a big heart for such a small person, and I am glad that she is growing into herself so well. Food to feed hope for many tomorrows come from smaller seedlings than the like.

John did well with Debbie while Iwas gone and they both were the better for it, I think. Debbie, served as cook, cleaner, mother and maid for the time and John learned both to reach a bit and to rely perhaps less. That is not to say, however, that neither found it blissful. When I returned, both were relieved, as was I, but I'm grateful still for their kindness.

On Thursday, John had tests for urinary infections, having developed symptoms. Such things are unpleasant in the stronger sense and, as the weekend progressed, so did the problem. Tonight, the clinic prescribed some medication that ought to help the symptoms and, we hope, also the general unhappiness John is having.

There is not much of what passes for night here near the 49th parallel at this time of the year and what little there is will come and go too soon, so it is time to see if I might find a bit of sleep in search of someone to haunt for a time.

"We" are now half-way home. 100 days post-transplant would have John released to return to Atlanta by Labor Day. We are conspiring to negotiate a slightly earlier date for him, if his condition cooperates. As we work on working our way back, I'm making my first trip back from Seattle since the beginning of April and actually will be IN the office. Tuesday will make 8 months to the day since John was diagnosed, and a bit over 3 months since we came out here.

Debbie will be here for the few days I'm gone as John's caregiver. She is, of course, fully trained in the long and complicated medical side of things, even though John can handle well the day-to-day routine IV, pills and most trips to the clinic. Watching and responding to problems is the more important part of the role, and also the "care" part of the role.

I think that both John and Debbie are nervous about me being away. She is just the tiniest bit intimidated by the way he can withdraw, which is not at all her style. At times, John enjoys a bit of verbal jousting, all purely for fun. Debbie has more than enough brains and guts to respond, but is a bit afraid to do so. My advice to her has been that kids are like wild dogs - you must never show fear or they will tear you to pieces.

As for me, the 6 hour trip to Mt. Ranier last Saturday was by far the longest I've been away from John in many months and five and a half will be a lot of time to worry about everything and nothing. It is a healthy part of the process for John though. We had a long conversation Thursday about how and when he might be able to transition himself back to "normal" life when we return. Of course, it all depends on his health, but after a time with us, he will want an apartment, perhaps a part-time job, and is shooting to return to finish at Emory in the Spring semester beginning next year. Ideally, he will have taken a year off from school the way some students do, but for different reasons.

Yesterday afternoon, we got a call from the clinic saying that they had detected CMV in his blood sample that morning. CMV is a virus that most everyone has had, but it happens to act like kudzu in the South when it finds a transplant patient and can be dangerous. Fortunately, they found it so early that there was only one cell detected in his blood sample and they reacted immediately, beginning IV treatments before we even knew what was going on. He will receive IV antiviral treatment twice a day for a week and once a day for two more. This shouldn't become a concern and shouldn't delay John's recovery. Just another bump marking the point when we are half-way home.

Cancer is a disease that one person has, but everyone around him lives with. John passed on to me a webcomic that tells one family's story in a very nice way. The link is at http://www.momscancer.com/eisner.htm and is worth the read.

If you are at all sensitive, you shouldn't read this part.

My dad asked the other day if I might want to write a book from my perspective about what I've learned and all of this experience. I've done some of that before in other contexts, but you won't find copies in the most obscure of places.

John recalled the question at dinner tonight and asked me himself. We exchanged comments and each ended up at that same place - the hardest part would be how to start. "I begin not knowing how this will end." It's funny we both thought the same thing. It's important that we could both say that to each other.

Of course, I'm sure you read all that anyway, but I did warn you!

I have trouble keeping up with dates. It is Thursday here and Friday in the East and tracking how many days it has been isn't all that easy while keeping up with life on two coasts and a family in the air in between. The numbers that matter, however, are John's blood counts and, as of today, they are solid. He is as healthy as he could be at this point and actually healthier than he has been since before all this began. Life doesn't make much in the way of promises for anyone, but it has granted him reason for hope.

Courtney spent a night or day or both in Detroit on her way back to Atlanta. Air travel has become a form of torture, but she is safely back and well, albeit worn. Debbie suffered a similar fate on a short hop from Raleigh to Atlanta. I believe the last Jewish saint was Theresa of Avilia - well, that's another story, but sainthood would diminish Debbie, so ...

John's blog has shown in some interesting places on the Internet, including a list of those living their way past cancer - "victims" doesn't do justice to the courage it takes to be a whole and a real person in the context of it all. I, on the otherhand, am happy enough just for a day and a moment now and then to reflect. It is really rare for a father to have this kind of time with a mostly grown son.

We "googled" ourselves recently and I found another Randy Cadenhead. He is a soldier in Iraq. The last one in that role is one of too many others on the Vietnam Memorial. This makes four of us around now. I suppose it may be maudlin, but the odds make it odd. I sent my wishes and prayers.

My Aunt Jan McGuire came through Seattle just before everyone left and we got the chance to share dinner together. She is 5 years beyond lymphoma and much more alive than most of the rest of us. We all enjoyed the time together, family from different corners of the world and then and again now.

Sleep seems to slip away too often these days. It is something of a sad joke around here. Good night then, perhaps.

It's been a busy few days, which fortunately have been pretty good ones for John. He was able to walk with her for about a mile, including climbing the Queen Anne hill which is no molehill. John has been working on his web comics again and seems to have more energy, though it is probably due to the steroids as much as anything.

We started the Prednisone "taper" or phasing out process over the past few days. Although John has a list of minor ailments, he doesn't seem to show any return to rejection issues at this point. They have started him on magnesium pills, as in "Milk of Magnesia", which have caused some digestive problems. Still, he is eating well. He still receives 1.5 liters of fluid by IV each night and our refrigerator has a shelf reserved for all the bags we have delivered. We both count out the dozens of ever-changing pills he takes each day. They say his numbers are fairly small because he doesn't have things like heart or other preexisting problems to treat.

My Dad and stepmom are visiting for several days. It is nice to be able to spend time with them. Debbie and I drove with them on Saturday to Paradise at Mount Ranier for the day, which is an old lodge on the tree line in the shadow of the mountain. It is built among the fragile high meadows that take over in places above 5000 feet, and, yes, they did actually pave a part of Paradise to put up a parking lot.

Because Courtney stayed with John, we were able to be gone for pretty much the entire day, which is a first for me in a long time. We were out of cell phone range for part of the time, and it took some adjustment on my part not to worry too much. As it ws, John did fine without me, which shouold be no surprise to anyone but me.

Debbie is back in Atlanta for a week or so. When she returns, I will go back to Atlanta for a week to spend some time back in the office - the first time since early April. I am able to put in some long days working here by phone and email, starting about 5 A.M. and quitting about 6 P.M. with time out for doctors and such during the day. Although I've tried hard to make up the difference that 3000 miles makes, I know it's not the same and am thankful for the tolerance everyone at the office has shown.

Today, we meet John's new doctor for the next month, which we are looking forward to. John's confidence has been affected, and perhaps his physical recovery, by the behavior of the one he was assigned since his release from the hospital. It is a shame that a doctor as inattentive as this one could be a part of a place that is deemed as good as this one.

That reminds me. We learned Friday that John's bone marrow biopsy came back with excellent results - good engraftment and no signs of relapse. I'm reminded because we asked the doctor about the results Friday and he hadn't bothered to read them himself. I'm disappointed that my efforts to bring all this to the attention of the center have met with so little response. Patients are least able to fend for themselves in a medical beaurocracy and it is a shame that a caregiver also has to be an advocate with the organization meant to be dedicated to his care. With one exception, every medical person here has been truly excellent. I have yet to find, however, a medical organization that practices the basic management tools of monitoring and managing "customer" care. Receiving a survey after release is no substitute for such things, because too many who have been failed are not able to respond.

That's enough of that. There is more to do today than time to accomplish it.

It is still Tuesday the fifth here, and it was, pretty much in all, a good day. Last night, we enjoyed fireworks from outside our back door overlooking Lake Union. We also experienced similar local noisemaking well into the morning hours. We are a long way from Boston, but all of America loves a tea party!

John has responded well to his Prednisone and will start reducing his steroids over a period of weeks. He really is doing very well. Except for itching and other odd things, he is better right now than he was a year before his diagnosis. We are looking forward to a change in his doctors next week. Although all the rest of his care has been excellent - well, I will leave it at that and remain thankful to be able get what is otherwise the best care for him anywhere.

John bought some new jeans yesterday, having given up on the 36 waist he once had, and then the 34s we replaced them with. He now can wear 32 size pants quite fashionably below his waist. He is 6 foot 2 inches tall and 160 pounds. He could use some "cushion", but he is OK.

John will soon lose his eyebrows and even his eyelashes due to the chemotherapy. He does have some peach fuzz on his head, but his eyes do show up clear and focused, as they really are now. At dinner (he wanted a "Bloomin' Onion" from Outback - a good sign of sorts) we talked about the trembling in his hands that has developed, something that may wane over time, we hope, and not the best thing for a pen and ink artist.

John's blood counts are good. They are falsely inflated because of the steroids, but they are still quite good. Debbie and I even ventured a discussion today about our final return dates to Atlanta. I don't know what the "emoticon" for having your fingers crossed is, but I would put it here.

Debbie and Courtney, inspired by the rowing we did at the wooden boat show, signed up for a private "skulling" lesson today. I have pictures, but out of kindness I have supressed the evidence and you will have to ask them for copies. If you are wondering, no one fell in, and they did have a great time. Courtney, as with so many things, took to it naturally as if she was skating on the water with long sweeping strides. She works hard inside, but the link between her mind and long, slim fingers is magical with pretty much anything she tries.

I realized today that I've been getting about four hours of sleep most nights since we arrive here. Some days I fall asleep for a time in the afternoon. Still, this is what I am about for now and not many people find as good a purpose in life as I have, hopefully fading, but with a very long reward.

If you need a good sign that John is improving, he and Courtney walked about a mile, much of it uphill Friday afternoon. Mind you, it was 65 degrees and cloudy, not 85 and humid enough to swim, but even downwind in a hurricane, it is progress. John and Courtney even went to a movie earlier in the day, early enough to avoid any public contact.

Debbie and I had dinner out and a restaurant nearby that ranks in the top 10 for us and that's quite a list. Obviously, she is over her cold and out of solitary confinement.

Saturday night, we had one of those rare treats we could only have had out here. My cousin Terry, the second of four sons to my mother's younger sister, who lives 2-3 hours east of here with his family, came over for dinner during a stopover before flying east. He, like all his family, is from salt of the heart of the earth. John, who is a wary sort, took to Terry and to Nancy in a moment, when we got together while leaving the hospital. All of us were all the more richly grounded for the meal we shared with Terry last night.

Today was one of those days when Ranier seems to float in the sky behind the city. Debbie, Courney and I enjoyed the Wood Boat Show and got a lesson in crewing. Debbie got invited to join the women's masters crew team, which she took as a compliment until she learned what the age group is. Still, she and Courtney are working on taking lessons. I didn't think I was all that bad, but I suppose I am more a sailor type anyway.

A running joke we all have is what changes might show up in John with someone else's blood flowing through his veins. Well, yesterday John developed a craving for chocolate, which he has never cared for in his life. We decided to make a list of things to ask his donor about when the waiting period passes and communication is allowed. Chocolate is now high on the list and we are all hoping to see it grow.