Grateful to be home

It is peaceful here at home. We arrived at 1pm after a very long 24 hours in Houston. Dillon greeted both of us by walking between our legs. I got to work hard all afternoon on a real work project with Diane, who had taken care of Dillon in her home. John took a nap. Brianne went out and bought groceries for John that included pear almond muffins, eggs, fresh squeezed orange juice, and a brownie. And then Peg Syverson came by with spinach tortellini and made a homemade tomato and artichoke sauce. John is now reclining in his recliner by the television in his study.

As friends volunteer for the days ahead, we are reminded of the lovely help we received before leaving for the hospital last week--Judith Sokolow, Kathy Kellerman, Diane Colvard, and Greta all taking John, bringing yummy lunches &/or visiting in far flung Austin hospitals.

Thanks to Dr. Tucker and Micci here in Austin, and to Drs. Forman and Andersson at MD Anderson, as well as Mary Miller and Sherry, their nurses. Also thanks Mary Alma, Sharron Rush, the Jims, Ron Hicks, Peter Slatin, Myles and my sister Patti. And all of you who have called and written emails--like old family friends of John's--the Levines and Mafi. And Steve Ausbury, the Italian angel from New York, who sent us a huge basket of fruit and cheese and olive pesto, etc. And our Body Choir friends who envision John in total health and happiness, sitting on our patio with his laptop and drinking red wine. And every one of you who are still reading these crazy messages. There are so many of you--please forgive if we haven't yet acknowledged your large kindnesses. But you are right here with us!

Love, Anna and John

3 drug interactions seem to be the culprits--Betcha good results follow!

From John: Hello, everyone. It's 9pm and we've just switched to a new room at MD Anderson in the outpatient clinic. We have several more hours before we get to sleep in "our own" bed, and miles to go before we sleep, and miles to go before we sleep.

Anna was just talking to her sister Patti, an RN, and learned almost by accident--a drug that we were given two weeks ago creates multiple side effects whose presence may explain why I have been responding as I have. This is potentially dire, but it is potentially quite rewarding, and we are hoping hard for the latter. The drug was prescribed on Sunday, January 14th (and I took it til yesterday when we discovered I had no meds from home) in anticipation of brain surgery that I am not getting. It's an anti-convulsive called Keppra and it can cause dramatic weakness, dizziness, and hallucinations. It will be great to get off of it. Apparently some people cannot tolerate it at all, and I may be one. Thank you Patti!

As we noted above, we have several hours to go in here before we walk over the skybridge nearby to our hotel room. If we have any sense, we'll use some of this time for sleep so as not to be quite so tired when we're driving back to Austin tomorrow a.m.

Anna: Can't wait til that awful stuff washes out of John's system!!!!!! Patti and my brother in law Dennis just experienced similar effects with a close relative and after they pulled him off of it, he regained his strength and came back to normal. Today was the day of finding out about drug effects. The 3 top ones, worthy of pulling or reducing for John are:
1. Bactrum which may be cutting his platelet (blood clotting ability) levels in half--Identified by Dr. Andersson
2. An antifungal (vericonozole) which is related to V-Fend, known to cause auditory hallucinations in some patients--V-Fend link was identified by a wonderful friend who's a Physician's Assistant here at MD Anderson--Link to this drug may not pan out as an issue
3. Keppra identified by Patti and Dennis Frank

So there are some possible explanations for the mystery. These 3 little demons may be causing a lot of the problem. Maybe fixing these will allow us to focus on success!!!

Love, John and Anna

A lot more waiting...Home early tomorrow (we hope)!

Hi there. John is currently waiting for infusions of saline, magnesium, and ambisome in the ATC tranfusion unit (2nd floor), a particularly inefficient unit (IMO) at M. D. Anderson. I think the Fox news and 2 stale coffepots always on, combined with our average wait in the small waiting room of 2 hours (based on only 4 visits here) makes for a difficult venue. Dr. Andersson will meet us here with any new lab findings and then we are free to come home. John will probably be here 4-5 hours after we are admitted into a treatment room. Then we will be free to go---I think.

But a late night drive doesn't seem as good as an early morning one. So we'll stay tonight at Rotary House and leave around 6am to get back and show up at Dr. Tucker's office for more ambisome. As you can probably tell, I am weary and John is too.

We did have a pretty good day. Dr. Andersson thinks the low platelets are due to a high-dose antibiotic John is on, Bactrum. Also we have heard that one of the fungal pills causes auditory hallucinations. So the PhD "PharmDs" are checking out drug interactions and side effects. New blood tests were ordered to check out more infections (everything from TB to recurrence of CMV), so John went back to the lab for a second set of blood draws.

Dr. A confirmed that final results from bone marrow biopsy were perfect and no evidence of leukemia is found in the blood. The mystery remains. We are trying to learn to live with this mystery and allow healing to happen simultaneously.

More very soon....

Love, Anna and John

Deeply not knowing....

Hi everyone: We are in Room 429 at Rotary House. We came to M.D. Anderson yesterday after John's dizziness seemed to be getting a bit worse and his speech was intermittently reverting to its previous slurredness. He had taken 10 days of ambisome infusions and 5 oral drugs (for infections they are hypothesizing as the likely cause of problems). Although we had seen quick improvement in speech and he had reported feeling a bit better, we began seeing some setbacks in certatin symptoms. To complicate it all, John was coughing, snotty, and feeling chilled from some new bug that seems to be going around in Austin.

On Sunday at 5pm, while coming into house from his infusion at Seton, he had slipped down the steps and bruised his head (no serious damage, based on CT scan, etc.) Also, morning nausea (no, he's not pregnant:), and hearing voices intermittently (So far when asked, these were about accessibility, people handing him English Department-related papers, and--I love this--washing dishes! We had contacted neurologist Dr. Art Forman in Houston, asked Dr. Tucker, and all 4 of us agreed that it was a good idea to come back to Houston and check progress at this point.

When we arrived last night, we went straight for an MRI that was set up by Dr. Forman. We were back to the room around 9:45 and at 10:30 Dr. Forman called to say that he had viewed the scan and thought it looked a bit better than one done 10 days ago, but it was inconclusive at this point. Today, he showed me the scan, and I can see some of the white shadowy looking areas getting smaller. Yippee--if this becomes the trend.

Tomorrow John has some special blood tests to investigate low platelets this a.m. and we visit Dr. Andersson at noon. The presumption is that we will go home tomorrow afternoon and resume the ambisome on Thurs. in Austin.

But we don't know. More later......
Thanks to all of you for following our adventures and sending your love,
Anna and John

What my day is like

John (as dictated to Anna): Good evening. Let me give you some sense of what my day has been like this past week. On Saturday, Sunday, and Monday, we spent days and early evenings at Seton Hospital, first going to admissions, presenting insurance ID and filling out forms, being assigned a room upstairs, and going up to the 7th floor to my room—a different room each time, getting vital signs taken, blood drawn, and getting weighed. Infusion medicine would then be ordered; then we would wait a long time. Then pre-meds--benedryl and saline solution--were administered by IV; finally, the main event—ampisome, a complex and sometimes difficult compound, was administered over a 2-3 hour period, and then I was free to go.

Anna: On Tuesday, Wednesday, and today, a step was added—going to Dr. Tucker’s office first--to receive the blood tests, get results and orders for infusion. While requiring a trip to a different building and starting earlier in the day, this approach actually saves time!! Thanks to Micci and Dr. Tucker, John can now arrive at the hospital with the orders in his hot little hand, thus eliminating hours for faxes to make the round trip between hospital and doctor. A variation for today was that Seton had no rooms in their central hospital near our house, so a third trip was added—going to the NW satellite location of the hospital—thus adding 90 minutes to the round trip (Thanks Diana!)

John:Accomplishing all of this has involved a cast of thousands, including, in sequential order of hospital trips this week: Mason Carroll, Brianne LaBauve, Jay Byrd, Larkin Tom, Janis Bergman-Carton, Evan Carton, Chuck and Marcella Rossman, Sharron Rush, Ron Hicks, Annie Hudson, Vicki Almstrum, Amanda Winters, and Diana Seidel. Our heartfelt thanks go out to all of them, and to those who have offered to help with these trips in the future. These treatments are scheduled to go on for 3 weeks. After much ado, Dr. Tucker’s office has been certified to give ambisome starting next Monday and this will remove a lot of the bureaucracy and wait time, so the process will be simpler. (Note from Anna: For Austinites who've asked to help with John's treatments and healing process, Sharron Rush has set up a Google calendar with this link: http://tinyurl.com/2kjjbc . Thanks Sharron for helping to organize us! You guys can also call 512-431-6619 if you'd like to help with rides, food, or visiting.)

It feels good to be in Austin and not be having brain surgery. I feel a little better, and I think some of the mist in which my brain has been shrouded has begun to lift a little. But even if it’s just a little, it feels good--it feels like I’m beginning to get my self back. I think Anna appreciates that too. Thanks, Anna, for all of your love and support.

Anna: I am encouraged by John’s progress--His voice is clearer and movement a bit steadier. If I sound reserved, I'm trying to remain calm and objective about what I am observing and restrain any exuberance that is waiting to express itself:)

John: And of course there’s Dillon. What more can I say? He doesn’t know that he has cancer, though he sleeps a lot. Anna and I cuddled with him when we got back from dinner. He was lying peacefully on the green futon sofa. He’s such a lovely dog.

Lots of love and hugs, John and Anna

Back in Austin, infusion adventures...

From John:
Hi all. I am about to go to Seton Hospital for Day 3 of my anti-fungal infusion. I certainly hope the 3-hour infusion will not require 9 hours at the hospital, as it did yesterday (Day 2)! Day 1 had been at MD Anderson and it took 3 hours. At Seton, there were a lot of bureaucratic hold-ups and some mishaps with the nurse not noticing for 2 hours that the IV machine had stopped the medicine and turned on the saline-only drip. Anyway, I wasn't prepared with enough reading material on my Book Port or enough food or enough oral medication, so Anna had to return 3 times after she first brought me. The good news is that Dr. Tucker and nurse Micci at Southwest Regional Cancer Center (5 minutes from our house and across the street from Central Market) plan to move these infusions to their clinic starting Tuesday. Yippee! I know and really like the people there and it will be way more efficient.

From Anna:
John should be in infusion mode starting around 11:30 CST today and tomorrow if anyone would like to call him at 512-784-7533. Even with great efficiency, he'll probably be there until at least 4:30 CST both days.

John looks great today with very rosy cheeks (probably one of the medicines). We can't tell yet if the medicine is working or not re: the walking and talking. It will be hard to tell for a while. We feel very positive about all of the efforts from all of the wonderful doctors and all of the support from you guys. I feel calm and optimistic today. It is a beautiful, very cold day in Austin. We are very happy to be back in Austin. We cooked at home last night and played with Dillon beside the fireplace.

Thanks for volunteering to help, so many of you in Austin! Superstar Sharron Rush is setting up a Google calendar to coordinate the help and to make it easy for anyone else to sign up to take or pick up John or come by, bring food, etc. We will post again when the calendar is up and running.

Love, John and Anna

Crazy Friday and requesting help from some Austin folk

It is 7:38pm Friday and we are still at the 10th outpatient infusion clinic ("ATC" for Ambulatory Treatment Center) at MD Anderson in Houston, while John completes his anti-fungal medicine called ambisome.

It was a very busy day in which an MRI, lumbar puncture (spinal fluid tap), lab visit for blood draw, visit to neurologist Dr. Art Forman, chasing down prescriptions to take to Austin, chasing down orders for daily infusions which will be at Seton Hospital 7 days a week (11-1:30 or 2pm), and many other tasks kept both Anna and Mason hopping at a steady pace while John underwent all of these exciting things.

Although we are still elated at getting to try treatments now (and holding off on the brain surgery), Dr. Forman, who'd been in contact with Dr. A by phone but not seen John since Tues am, is a bit worried about John--as his walking and talking are not getting better and the MRI is between the same and a bit worse than 1 week ago. Dr. Forman wants to follow up at the end of next week to see if the ant-fungal meds are helping John feel better. He said, let's give them a chance but I don't want to wait 2 or 3 weeks.

He would then recommend the diagnostic surgery to accelerate the targeted treatments.

So everyone--we really appreciate your positive prayers and visualizations of these 4 potions working and John back on the dancefloor of life--in the thick of accessibility activities and collaborations, writing, dinners and visiting, sweet friendships, creative problem solving, reading, researching, studying technologies, being at home, traveling---all of the things that he loves soooo much! Thank you thank you thank you!

Also, special request for Austin friends if you have some time to help (on top of what you have already done): I am very exhausted. Mason is returning home tomorrow. We drive back to Austin tonight (arriving around 11:30pm) and John starts tomorrow on his daily infusions. If any of you can volunteer to take, pick up, bring lunch, or all of the above for John on any days starting Sunday, it would be very very much appreciated!

He needs to be picked up at home around 10:45am and taken to Seton Hospital and walked into the first floor clinic for an 11am appointment, brought lunch to eat at the clinic, and then brought home around 2pm. Please email me if and when you can do and I will confirm back by email. Or you can call tomorrow after 10am at 512-431-6619. If you can't do this, there are other ways you can help us if you have a little time to shop, visit, or hang out at the house with John.

Lots of love, Anna

Brain surgery cancelled in favor of going home and taking pills!!!!!

Ahhhhhhhhhhhhh!!!! Dodged another bullet. Instead of preparing for brain surgery, I'm having Vietnamese food in preparation for being discharged TONIGHT!!!

It turns out that after many doctors did and didn't make contact as efficiently as was desired, neuronsurgeons Dr. Weinberg and his department chair reviewed the MRIs again and decided that the affected ares in John's brain were too small to justify a diagnostic craniotomy. They recommend treating the most suspicious root cause (fungal infection) and then repeat MRI and bone marrow biopsy in a few weeks. If affecte area has enlarged, they may (or may not) recommend the brain surgery.

So Dr. Andersson and infectious disease doctor, Dr. Adachi, conferred and settled on 4 drugs (to cover 2 fungal and 2 other infection possibilities) John needs to take (3 by mouth and the 4th (ambisome) by IV--hopefully handled in Dr. Tucker's office.) Anna's commentary: Let's all send positive energy to these particular drugs as curing the mystery spots.

More later. We are amazed and giddy for this sudden turn of events!

Love, Anna and John

Diagnostic brain surgery planned. Now waiting......

This has been a confusing, somewhat chaotic week of plans, changes, and an overload of medical information. John, Mason, and I have learned way more than we ever wanted to know about craniotomy, brain biopsies, infection, treatments for infections, being rushed, and then....and then..... waiting.

Which is what we are doing now. Having agreed that a biopsy of the infection or lesion is necessary before treating the problem, we are now awaiting word from the neurosurgery folks about when the surgery will occur and which surgeon will do it.

The brain surgery will probably happen on Friday of this week or early next week. The procedure, a diagnostic craniotomy (anaesthesia, drilling hole in side of skull, removing tissue, then replacing bone), will take around 3 hours. John will be in intensive care the first night and then back to a normal room. He will be up walking around within 24 hours. The sole reason for the surgery is diagnostic. They won't be removing anything except the biopsy tissue in an area of the right frontal lobe in an area in which it is apparently safe to operate. All of the doctors feel they really need to know what they are treating before they start any treatments for the mystery areas they are seeing on the MRI.

The treatments that come after the surgery are likely to be anti-infection drugs delivered intravenously to target whatever they find. If they find leukemia, which they say is unlkely, the will do radiation, and that still would have a good chance of long term healing for John. If he has the infusions, he can likely have the treatments in Austin, after staying here to heal from surgery and start the drugs.

To us, brain surgery is scary. I do not feel strong, although up til now, I've felt pretty strong and that's been spontaneous. John says he is scared as hell AND he is choosing to do this as the best path to full healing. I am envisioning very skilled and "beautiful" surgery to gain all positive benefits for John. We will ask for your healing energies and prayers during and after the procedure.

The good news in all of this is that they are now sure that what they see on the MRI is the root cause of John's dizziness, speech and impaired right arm problems. Identifying and treating this root cause has a high likelihood of relieving these problems.

More as soon as we know details. Many many hugs and kisses, Anna and John


Many many hugs and kisses, Anna and John

so we're going to have the brain surgery.....

Tues 7:30pm

We wanted to let everyone know where we are and how we're doing. We're in our room at MD Anderson Hospital, G-1147, c/o Anna's phone 512-431-6619.

Yesterday and today have been very intense, involving many conversations with doctors after putting a hold on the diagnostic craniotomy Dr. Forman planned--purposes of determining what is in being seen--inflammation? fungal, viral, or bacterial infection? leukemia relapse or other tumor? these have been the burning questions since i was admittedon friday.

Tomorrow, we have another conversation with Dr. Andersson, and then whatever prepatations are necessary for a biopsy.Stay tuned--more tomorrow!

Love, John, Anna and Mason.

Sunday update

Quick update from Anna as so many have called and written. First to clarify our access---John's email is not working here so you may wish to email John through me at annac@interactiondesign.com.

John is eating beef udon noodles with veggies. Mason and I picked it up on the way back from Bush Intercontinental (Did I really have to type that name?) where Mason arrived from San Francisco. Welcome Mason--John and I are both so happy to see him!

John has had the NFL playoffs on and the doctors and nurses have been very helpful and caring this weekend. Dr. Andersson and his research fellow talked with us quite a while this a.m. The spinal fluid so far shows elevated proteins (a problem) but no leukemia. They had talked with Dr. Forman, neurologist, and confirmed plans to:

1. Have infectious disease doctors take a look at Friday's MRI to see if the questionable areas on John's cerebellum and right frontal lobe are recognizable as infection.
2. Have a bone marrow biopsy tomorrow to look for clues re: this brain thing.
3. Have neurosurgeons look at MRI and visit with us tomorrow re: risks and plans for doing a biopsy of the area.
4. Have ENT doctors consult. After John complained of an ear problem, Dr. Andersson looked at Friday's MRI and saw sinus infection which they are now treating with IV antibiotics, antifungal, antiviral, etc.

If John ends up having a tumor (vs. the current hypothesis of an infection), he would need radiation. However, radiation would lower immunities so they don't wish to start anything like that unless infection is ruled out.

John is a bit tired of being so interesting as a subject of scientific investigation. Meanwhile we soak in your love and John enjoys football. More tomorrow....

Love, Anna and John

Back in Houston, hopefully for only a few days.....

Hi everyone: This is from both John and Anna. Each of us has had a lot of technical difficulties lately getting into the blog to post--with passwords and disappearing messages, etc. so we are jotting this down quickly so we can click the "publish post" button in hopes this will reach you. We plan to follow it up with a more longer post later today or tomorrow.

John came for a follow-up MRI and check-up on Friday morning, expecting, as everyone predicted, that the MRI would be negative for the lesion or inflammation they had found in July. In the later July and fall MRIs, the mystery lesion "resolved"--got smaller and smaller--and no one was able to identify what it had been, as it occurred in the cerebellum area, where things are difficult to see, even with multi-million dollar equipment. Sweet Oskar Madera had driven John here from Austin the night before for the 6:30am imaging and 11am appointment with smart and caring neurologist, Dr. Art Forman. Anna, who was busy working, fully expected John and Oskar to return in the late afternoon.

Dr. Forman told John at 11am that they had seen an enlargement of the lesion/inflammation they had seen in July and that he and Dr. Andersson wished to investigate further. For that they needed to check John into the hospital. Also, Dr. Forman had noticed that John's slurred speech (which we thought was due to autonomic neuropathy) had gotten worse, and as he explained to Anna on the phone at noontime, this is correlated to the cerebellum area.

Oskar stayed with John as they checked him into the hospital, and brought him snacks and soup as John was processed through the Emergency Center and onto our familiar bone marrow transplant floor G11. John's room is G1147 at M.D. Anderson (713-792-2121). Nurses and other staff recognized and greeted John.

Meanwhile, Anna went into high gear in Austin--packing Dillon to go with sweet Diane Colvard (and her and Jack's six cats), as well as clothes and computers for Anna and John and got on the road for Houston.

At around 6p.m. just after Oskar left and Anna arrived, Dr. Forman came in to do a lumbar puncture (to test the spinal fluid). We are due to hear preliminary results of that later this a.m.
If the spinal fluid is clear and free of leukemia, they are planning to do a biopsy of the inflammed area (in the brain) on Monday or Tuesday. Dr. Forman thinks it may be an infection, something they see after transplants for leukemia sometimes, and they will learn what kind of infection to treat. If the spinal fluid or biopsy shows leukemia, there will be the familiar treatments of spinal chemo and some brain radiation. The third and most unlikely possibility is that this is another kind of brain tumor and unlike leukemia, some of these types of tumors are tough to treat.

John is aching to not be in the hospital. His spirits are a bit down about being here again--and so are mine, although I do have to say that John's sense of humor prevails. We both miss you all already and our fun lifestyle in Austin. I assume we'll be here through the biopsy at least--perhaps for the rest of the week. Certainly we'll keep posting all news. If we must stay in Houston for more treatments, we would LOVE to see you or receive your cards and letters. Each time we come, it is harder and harder on both of us.

Calls to John's cell--512-784-7533 (thanks for being patient as it sometimes takes time for John to locate phone)--, emails to either of us john_slatin@austin.utexas.edu or annac@interactiondesign.com, or visits anytime (the more the merrier) are appreciated, and if we are here for any length of time, visits are especially requested. We have a room at Rotary House you can stay in--as there is also a Murphy bed in John's room.

Lots of love and hugs,
John and Anna (512) 431-6619