Whew!

Hi ya’ll:

Tuesday, September 18th--That sound you heard in the background, if you heard it in the background, is the sound of road noise because we are on the way back from Houston to Austin--from MD Anderson to home. There’s good news. Dr. Foreman, my neurologist, told us that today’s MRI, as contrasted with the one taken ten days ago, showed that there had probably been an inflammation of some sort in my cerebellum (where it’s hard to see lesions on MRIs), but that it had shrunk significantly in the last ten days and seems not to be a problem. It’s not a tumor. According to Dr. Andersson, there’s no sign of leukemia anywhere—not in the spinal fluid which is crystal clear, nor in the brain, nor in any of the fluids drawn during the bone marrow aspiration on the 6th. Other tests for infection, including the C dif infection (which some of you will remember my having had last year here in Austin that put me into Seton) was clear as well. So, we’re very happy, and a lot more tired than either of us realized we would be, and it doesn’t matter because we are happy because we are doing so well.

It’s been so long since I’ve written that I won’t even try to tell you all the stuff that’s gone on—so many small details and big details since the last time. But we did have a wonderful visit with Ledia and Wolf a couple of weeks ago. Ledia is fine and happy and more content and mellow than I had seen her in a long time. And Wolf was—is—spectacular and lots of fun. Now four months old, he weighs 20 lbs and he is trying with all his might--which is considerable--to stand up. He likes to be on my chest and other people’s chests with his feet and he struggles to pull himself up in the air as far as he can--and he does that over and over again. Anna says if we adults did that many squats from kneeling on the ground to fully standing, we’d be super strong. He goes far to his full height.

We also had a wonderful visit with Mason these past few days and just dropped him off at the Houston airport. Mason came to Houston as soon as we found out from Dr. Tucker that the brain MRI done in Austin showed there was a 7mm “enhancement” (which might have been leukemia or another kind of tumor) and we needed follow up at MD Anderson... It was fun to be with Mason; he’s driven us everywhere and hung out through a lot of appointments and waiting time. And helped us laugh (and cry) through it all. He also managed to be with us in Austin for the weekend--went with Anna to see Gotan Project and we all went out for many Mexican meals.

Dan and Diann, Dillon’s puppy raisers from Richmond, CA are coming here this weekend to visit Dillon (and us). We are so thrilled to be intertwined with them in this lovely way, through Dillon.

Wednesday, September 19th--I’ll close now. I want to thank all of you for so much love and so much support and so many kind thoughts and being such wonderful friends. We want to thank you for both your intangible and your tangible help--for taking care of Dillon, for taking care of me, for bringing me dinner, for getting me lunch, for coming over and sitting with me, for giving me rides to the doctor whether that doctor was in Austin or in Houston or in Dillon’s case, in College Station, where we took take him back in July—and the many many kind thoughts and words and calls. And doing that over and over and over for 2 years and 3 months now.

I am preparing for my UT class this afternoon. It feels great. Thanks and I will write again soon.

Love,
John and of course Anna and Dillon

John hone from Cape Cod, Anna's gone on to Seoul

This is just a quick note. We spent a wonderful week on Cape Cod, at the beautiful home of our friends Steve and Helen, on Scraggy Neck, near Catawmet. I sat on the deck, enjoying the sun and the breeze in the trees and the crash of the waves on the beach a few hundred feet away. One afternoon Steve and Helen and I went out in the boat for 45 minutes or so; another day Anna a and I drove down the Cape to Truro and my favorite beach, Fisher Beach (on Fisher Road, of c course), and then to our favorite restaurant, the Brewster Fish House in-- you guessed it-- Brewster. Yum. We didn't stay long at the beach-- we were both nade nervous by the fact that *as we realized when we were almost there) we didn't have a Town of Truro parking permit and dogs weren't allowed till after 6:00... We went anyway, Anna parking briefly in a handicapped parking space and allowing me to go on ahead. The walk up the slight incline and down again wore both me and Dillon completely out. I just don't have the strength yet. But I was delighted to be there.
Anna and I (and Steve) traveled back together as far as Atlanta; then I stayed on the plane, wich was going on to Austin (thanks tobrilliant arrangements by Steve!!)while Anna and Steve and another colleague went on to Seoul. She'll be back on Saturday, and I miss her.

Home! Home!

I’m sprung from the hospital! We got back to the house at about 10:45 this morning, somewhere around there; I went to bed; Anna and Diane went back to work, and Dillon bit his bed, humped it, and fell happily asleep, which nicely expresses the sheer physical pleasure of being at home.

I still coldnt manage to get a functional Internet connection at Seton. Why I dunno. Hence my continued silence. But I’m home now, so that should change things a bit. And I hope (Please!!) I’m here for a while.

More tomorrow. I’m tired now and going to stop in a minute. But I wanted to tell you how much I love you and how much your love means to me and how much it’s helped us get through what’s been possibly the most difficult period in the nearly two years we’ve beeh dealing with this. So thank you, thank you, thank you.

Much love,

John and Anna and Dillon

Better and better but still not out of hospital

Hi all: Anna here again. John is still in Room 1179 at MD Anderson in Houston. His computer is still not connected to Internet, even though he's been issued an account at the hospital--(hardware problem we need an expert to solve). When I go back to Houston on Saturday(from Austin where I came this morning), will try to have a service call made. Maybe it'll be fixed before he leaves:)---Which we hope will be Monday or Tues of next week. Jay Byrd drove to Houston today in time to stop at Nit Noi in Rice Village and get them Thai food for lunch. I arrived in Austin in time to have puffy chicken tacos with Diane at El Chile.

John truly is getting better now. No blackouts or dizziness today. He is walking and moving about far better than yesterday and the day before. John told me he walked around the entire hospital floor twice just now without a problem. The "treatment" has been lowering the steroid, Medrol, to almost nothing and removing another drug, neurotryptaline, which sometimes causes dizziness. Both of these take a while to work out of your system, so they are still observing if this is truly doing the trick. Doctors don't want to let him go feeling shaky or blacking out for a few seconds after standing or sitting (with rapidly dropping blood pressure--postural hypotension).

Other good news is that results of the many many tests done over the last 2 weeks are all negative. No cancer, viruses, other infections, GVHD, etc. He is good to go as soon as he's demonstrating more of what he's done today. Also, John is looking pinker in the face, smiling more, and acting more himself--more wisecrack jokes, etc.

As you can imagine, this has required a lot of patience. The clinical team visiting him every day, is clearly staffed by very smart and very caring folks, and yet these problems are complex and hard to isolate. John has received so many different kinds of treatments and experienced so many side effects that everything gets intertwined and they admit they get stumped and have to try one thing at a time. We are very joyful about the progress now however.

And now for the answers to the 2 most crucial questions: 1) Yes, we are still awaiting a wonderful grandson in San Francisco and 2) Yes, Dillon is leading a fabulous life--with dog whisperer Cynthia and her husband, and he is attended by a harem of stylish young women at the Cotton Club store in River Oaks where he goes to work every day--to be petted, lain on, and walked outdoors (in beautiful landscaping next to Smith and Hawken), etc. At night he sleeps in the master bedroom at the foot of Cynthia's bed in a big dog bed and he gets to play in their fenced 5-lot yard in the Heights with her 13 other dogs (many of whom she has rescued).

Love, Anna and John
John (512) 784-7533
Anna (512) 431-6619
annac@interactiondesign.com

Getting Better

Hi everyone: My cyto-megalovirus is on the wane and I'm feeling stronger. Just finished a dinner of shrimp in garlic olive oil with angel hair pasta and a dessert tart of raspberries & blackberrie with whipped cream. Anna brought this from Carrabba's on Kirby.

Jim Allan and KC Dignan stopped in after their visit to the Museum of Fine Arts. It was great to see them and they brought me homemade brownies.

We're listening to music and dozing. Anna made arrangements for Dillon's care and that's allowed us to spend more time together, which I really love.

My platelets were up today, which is a good sign. Liver enzymes were down--also a good sign, and other tests all good as well.

Ledia's baby is due any day now, and we're very excited. Mason is planning to fly in tomorrow at 2:30pm. It'll be so great to see him.

That's it from the MD Anderson front now; see you soon! If you'd like to write, please send it to annac@interactiondesign.com. I love hearing from you!

Love, John

Quick update from Houston

Hi everyone: We arrived at MD Anderson last night. Anna is typing this from my room, 1179, in the old familiar bone marrow unit where Dr. Andersson and his team regularly make rounds. Hopefully I'll only be here for a few days. I'd been suffering from muscle weakness, low blood pressure, and rapidly lowering platelets and Dr. Andersson thinks I either have an infection masked by the steroids or something called IPT--your immune system starts making antibodies to attack your platelets. They started me on 2 antibiotics by IV and I already feel stronger.

Anna and Dillon are staying in Rotary House. Lisa from the hotel is acting as dogsitter every few hours so Anna can visit me. Dillon, as before, isn't allowed on the floor with so many immune-suppressed patients.

What adventures! More news soon. Love, John

Quick update: trends going in right direction!

Hi, all. Thanks so much for your phone calls and emails and waves of good wishes. It all seems to be working!

My liver enzymes show significant improvement-- not normal yet, but definitely headed back in that direction. Bilirubin's headed down, and so are the other ones that are just initials to me, and that's a good sign. As of today the dose of Medrol (the steroid) has been reduced from 160 milligrams a day to 128-- still a lot, but less, and that makes me feel much better. Everything else stays the same for now.

Dr. Andersson, my regular transplant doctor, is back in Houston, so Dr. Jones has handed me back over to him and that's who I'll see when I go again in 10 days. Anyone who feels like giving me a ride to Houston and back on the 25th? it would help Anna a whole lot...

We made it back to Austin last night and got to Asti-- our favorite restaurant, which also happens to be just a few blocks up the street, a dangerous combination!-- for a wonderful dinner, both of us feeling a strong sense of relief, like we can start to breathe again without having realized we'd stopped... We had pretty good weather pretty much all the way, though we'd been hearing all day about thunderstorms and a big cold front. By the time we came out of Asti, though, it was raining pretty hard and the temperature had dropped considerably, and when Anna went to check her email the network had gone belly-up. So the Cable-Modem guy came today and, after some finagling, seems to have gotten it all working again. Another sigh of relief!

We saw a couple of good friends yesterday during our short visit to Houston. Ran into Dan Trachtetnberg, from the Jewish volunteer services, when we went into the cafeteria to grab a little sustenance-- I had a baked potato and Anna had the "pyramidal" lunch, a scary notion if ever there was one!-- and we sat down with Dan for a little while. He's a lovely man, and it was great to see him. And then Glenda Macddonald from the Chaplain's office caught up with us while we were waiting for Dr. Jones to come into the examining room, and that was good too-- another chance to catch up. She says the support group for caregivers that got started while we were up in the ATRC last fall is still going, with 7 participants right now-- all men, as it turns out, whereas previously they were all women. It's just how the demographics shift from moment to moment-- who's sick and who's well, who can afford time away from work or can't leave kids unattended at home, etc. Fascinating. And while we were sitting in the waiting area a man started a conversation with me about Dillon, which moved quickly from Dillon to how we're both doing. I said I was having a little touch of GVHD but said I was doing OK; he commiserated; I asked if he was OK, and I could all but hear a slow, sad shake of the head as he said no, he had lost his mama to cancer last night and was just there taking care of the final paperwork. My heart broke. He was so gentle, so compassionate, so softly spoken, so grief-stricken; yet he had time and room for me and for Dillon, time and room to be genuinely interested and concerned. We talked for a minute about what an amazing place M.D. Anderson is-- everyone from medical staff to patients. Then we talked a bit more about dogs and their 14-year-old cocker spaniel back in Puerto Rico, where they have their home. And then the nurse called me back into the examining area and that was that. Astonishing,

Liver biopsy, LGraft vs. Host Disease

Well, I did walk into the tall grass, and I've gotten mauled a bit. But it wasn't the paper tigers turning back to real ones, or not the way I thought they would, anyway. It was me, waiting for myself in the bush.

In this corner… Johnny (“Graft”) Slatin… and in this corner, Johnny (“Host”) Slatin… Hard to tell Self from Other in this post-transplant era.

I’ve been diagnosed with Graft vs. Host Disease of the liver, and put on a heavy dose of steroids (Medrol). I’ve also been put back on ProGraf (Tacrolimus, the anti-rejection drug I was first given a few days before the transplant and which I continued to take till the end of January to suppress my new immune system and keep it from taking power too quickly), a bunch of anti-drugs (antibacterials, antivirals, antifungals) to make up for the re-resuppressed immune system, and a low dose of Lexipro, an antidepressant to ward off some of the evil spirits/mood swings that can be a side-effect of the Medrol (I once had a very nasty depressive bout when I tried to take a Medrol dose-pack to reduce inflammation in my back; fortunately Anna’s dad, a surgeon, was on hand to give me peremptory instructions to stop the Medrol; end of that problem, but it made me leery even though I got through another dose-pack last summer to counteract the radiation recall reaction that flared up so badly while I was at Seton last June and early July).

We went to see Dr. Tucker last Friday for what we thought would turn out to be routine blood work. In fact, the CBC results were just about “perfect” and we were getting ready to go home when the nurse, Micci, called (we were still in the waiting room) to say she was coming out to talk to me. She didn’t sound happy, and she wasn’t. My liver enzymes were way up—significantly elevated. That could mean a lot of things—graft vs. host, liver cancer, who knew. She was distressed, I was scared and distressed, and Dr. Tucker was on the phone arranging for me to get to M.D. Anderson on Tuesday to see a Dr. Jones, who was filling in for Dr. Andersson, my regular transplant doctor, who would be away for another couple of weeks. Dr. Jones thought I should come in quickly, but would get through the weekend OK; Tuesday should be fine.

So, freaked out and depressed and with a sense of personal failure, I called Rotary House to make a reservation. No room at the inn, I was told, but then the man on the line recognized my voice or my patient number or something and his tone brightened and he was sure something would open up over the weekend; he would put us on the waiting list. And on Tuesday morning, at a little after 5:00 AM, we got into the car and drove off into what would not be sunrise for a couple of hours yet. Just as I was trying to learn to enter the focused state of calm contemplation without having to be sick first!

We got to M.D. Anderson about 8:15 and went straight to the ACB (now officially called the Mays Clinic, I think) to prep for a CT scan of the abdomen, my first test of the day. That involved drinking three full Styrofoam cups of Barium and waiting about 30 minutes, then being ushered in to the sliding table that would take me into the scanner. An IV was inserted in the crook of my left elbow (I had already been through this on Friday at SWRCC and Austin Radiological); I was instructed to raise both arms above my head, and then iodine contrast dye was injected through the IV. Made me feel very hot all over, from the inside, which was very strange and might have become intolerable if it had lasted long; but it only took a few seconds, during which a recorded British voice told me when to hold my breath and when to let it go. And that was that. I changed out of the scrubs they had had me wear for the procedure, and we went to the next thing.

The goal this time was to reschedule a 30-minute “pre-interview” in advance of a liver biopsy that was scheduled for Thursday, and which for some reason has to happen the day following the interview. We wanted to have the biopsy on Wednesday so we could go home that day and so that Anna, at least, could go to the BodyChoir retreat that we had been planning for so long to attend. So we went up to the Bone Marrow Transplant Clinic, enlisted the help of one of the schedulers, and lo! And behold, by the time we got back to the ACB for the interview not only had it been rescheduled but the biopsy itself had been moved to Wednesday morning at 7:30! Shows you what can happen when Anna-Tinkerbelle the Warrior-Fairy is working for you.

After the interview (which wasn’t at all informative) we went somewhere else (I’ve lost it) so I could have an ultrasound of the liver. It was very thorough, and parts of it were repeated—first the tech did the whole thing, and then two doctors came in, one supervising the other; at one point I was fascinated to note that there were native speakers of four or five different languages crowded into that room. Dr. Gomez directed Dr. Wurmers where to point the probe and asked him to describe to her what he was seeing. Then she said to me that everything looked pretty good—no sign of lesions that might have meant cancer, but there were some gallstones (nothing to do about them unless they caused trouble, which they’re not), and there’s a “teeny” benign cyst that’s also no cause for concern—apparently millions of people have thousands of these things. So OK.

It was something like 1:30 by now. We were running a straight line through a whirlwind! We went and sat in the ACB lobby, near the cafeteria, where we could hear the lobby “waterwall” and feel the sunlight streaming in through the wall-height windows. And then, to our absolute amazement, my cell phone rang and it was Dr. Jones’ nurse, asking how soon we could get there! A first in the history of medicine!

Dr. Jones is a big man, or at least his presence fills the room. He has a strong confident voice, he knew exactly what he wanted to do, yet was also extremely personable and helpful and proactive. He explained that he was pretty certain that I was experiencing graft vs. host disease of the liver, as well as showing symptoms in my mouth (severe dry mouth, painful lesions), some rash on my face, scalp, chest, and back (Dr. Tucker had been pretty sure of this too, and had sent me to the dermatologist upstairs on Friday for a skin biopsy which turned out to be positive for GVHD). Unless the liver biopsy showed something else going on, he would start me on steroids tomorrow (Wednesday), and ProGraf, and all the other stuff I mentioned at the beginning of the post; he wanted me to see Dr. Baile, the psychiatrist, to make sure the LexiPro would be the right course of action, but otherwise he was ready to go; he called Dr. Baile and did a little friendly armtwisting to get him to see me that very afternoon. Whew!

Wednesday morning we showed up at the ACB for the liver biopsy. It’s a long, complex procedure. There’s about an hour and a half of prep—VerSed (for “conscious sedation”), sterilizing the area, administering local anesthetic. Then, in a “trans-jugular liver biopsy,” which is what I was having because it’s ostensibly safer than the more traditional percutaneal one where they go in “blind” directly through the stomach, a needle is inserted into the jugular vein; a catheter is somehow guided around the needle. That needle is then withdrawn and replaced by something else, but I think I’m starting to get the details wrong here… At any rate another needle is somehow inserted down the length of the catheter and into the liver, where some kind of clip at the end bites off a bit of liver, comes up, and then goes back for more until the pathologist says there’s enough for a meaningful diagnostic sample. Then they remove everything (well, all their equipment) and you stay there for another three hours while they monitor you in case of internal bleeding. Seeing none, they gave us our walking papers; we went up to see Dr. Jones one last time (I was amazed at how much room he made for us in his schedule), collected a couple more prescriptions at the pharmacy, and were on our way.

I felt fine after we got home Wednesday night, and fine on Thursday morning. But about noontime on Thursday I wasn’t feeling so well, and I had a hard time staying focused when JayByrd came over to visit later in the afternoon. By 5: or so it really hurt, so we packed up again and went to the Emergency Room at Seton. They did yet another CT scan, and once again saw nothing—no signs of internal bleeding, no signs of infection. They sent us home and told me to take pain meds orally when I got there. By 9:30 the pain was even worse, and we went back. I think two ER visits in one evening is a record for us. This time they admitted me so they could keep an eye on things. They started with oral Delauded but that didn’t seem to do anything so they switched me over to an IV, which helped some, and kept me there till Sunday morning, by which time the pain had gone down enough so that I felt I could go home without Anna’s having to be in a state of constant panic and watchfulness (during my time in hospital she had been able to take Dillon out to the retreat while I rested; I think that was good for all three of us).

So now it’s Wednesday afternoon. As of Monday morning my liver enzymes were down, a hopeful sign that I've already begun responding to the Medrol. The pain has diminished some more, too, though I spent the entire first half of the day sleeping. I’ve cut back on the Delauded because I just couldn’t stand the grogginess, and hopefully that won’t come back to bite me later in the afternoon or evening.

We go back to M.D. Anderson on Friday for a follow-up visit with Dr. Jones. I hope he’ll be able to tell me I can start tapering off on the Medrol (he said that would be possible when the enzymes showed a clear downward trend), but I’m not counting on it. I hope.

Sorry it’s been so long since I reported in. To cut to the emotional crux of all this, I feel punchy, like I’ve been slapped one too many times; there’s that sense of personal failure that I mentioned earlier, which I know I “shouldn’t” feel but do; and there’s a sense of anger that hasn’t been there before, or hasn’t been this open. I don’t want to stay there, but I think I’d better sit with these feelings for a while and see what emerges.

Thanks, and love to all.

John (and of course Anna and Dillon)

P.S.The worst of the accessibility problems on the Blogger log-in screen seem to have been fixed! I was able to get to the username field and the password field using the tab key, and logging in was no trouble. Thanks to everyone who's been working on this!