Hope is the thing...: March 2005

Thursday, March 31, 2005

Day 132

This is part of an email sent earlier this week to family and friends as an update.

Please excuse the impersonal nature of a mass email, but I wanted to let you know the latest on John’s leukemia treatment. John will soon undergo a bone marrow transplant at the Fred Hutchinson Cancer Center in Seattle. His treatment begins on April 12, and, if all goes well, the transplant will occur on about May 5 or 6. He will have to remain in Seattle for monitoring until sometime in August.

John is doing well right now, after some difficult times from chemotherapy and an infection. A suitable donor has been found and the Fred Hutchinson Center is by far the most advanced and successful bone marrow transplant clinic in the world. Given the circumstances, we are as encouraged as anyone could be, knowing that he has all the best advantages going for him.

We will be setting up house and office keeping in Seattle while John is there. Debbie will commute back and forth and may also work out of a firm in Seattle at times, but I expect to be there for most of the 4 to 6 months that this may take. We hope that Courtney will be able to join us for some part of the time, as her own situation permits. Since you have all expressed your concerns along the way and some have been able to help in valuable ways, I wanted to give you this update and also our contact information.

For those who may not know, John has begun a weblog about his experience with leukemia. You can find it at
http://www.livejournal.com/users/johnvscancer/. Rather than send out emails to all those following John’s progress, I followed John’s example and have posted regular updates at http://randycadenhead.blogspot.com/. By all means keep in touch with us directly, but both blogs have lots of information that we sometimes forget to repeat individually.

Thank you all for your kind and caring thoughts. This is a hard time in many ways, but also one where we have been reminded to appreciate and enjoy family and true friends each and every day, all in ways that clichéd phrases like those can’t adequately express.

5:13 PM | Permalink |

Thursday, March 24, 2005

Day 125

I think the mist over getting started in Seattle may be clearing just a bit. One of the coordinators called John late yesterday and said his initial appointment will be at noon on Tuesday, April 12. He will then have two weeks of outpatient work involving tests and installing a "Hickman port" in his chest to replace the tubes he now has in his arms. Dr. Hickman invented them and still comes in and installs them sometimes, they say.

On April 25, he will have a conference with the head doctor of the team and will probably start a 3 weeks hospital stay at that point. He will receive two chemotherapy drugs, Bucolfin (sp?) by pill 4 times a day and Cytoxin (with a name like that, you don't want to know what's in it) by IV twice a day. His transplant will be on May 5 or 6, assuming all has gone well with both John and the donor in the meantime. The normal period of time that he will need to be in Seattle, barring complications, will be about 100 days. In that time, he will need to stay well, the transplant will need to "take", the time for acute "graft versus host disease" (GVHD) will need to pass, avoid relapse into leukemia and then adjust to all the things that are involved in living with someone else's blood and immune system.

I have offered to have John ready earlier if they have an opening arise, but so far they haven't responded at all. I'm guessing that means we will need to have him there and ready for April 12. Debbie and I are working out the logistics, but I think I will go out about April 8 to get things set up, perhaps with Courtney's help, and they will follow on the 11th.

The stress, compounded by getting ready for a move without a fixed date, is taking its toll on all of us, finding a weak spot in each - not just John, but Debbie and also Courtney, who has been alone with her own needs through much of this. I'm getting by well enough for now, but living on emotional credit can lead to paying with interest over time. Cancer is a family disease that eats away at more than its intended victim. It can tear down individuals, but the only way to overcome it is to fight together. That is what family is for, I think.

9:53 AM | Permalink |

Tuesday, March 22, 2005

Day 123

Debbie's quick trip to Seattle was very successful. She was able to rent a home with three bedrooms, which will roughly the same as the smaller "dorm" type apartments that the Center recommended. She met with a furnishing company and has furniture and household items ready to deliver on three day's notice. She also met with a friend who has conference room space set up for her at the friend's law office not too far away.

The House (see photo below) is in the Queen Anne area across Lake Union. It is 2.7 miles from the Center and about the same to the hospital. While it will involve driving, the area is much more livable and safe. I was going to say it is a lot like Midtown Atlanta, only hillier, but Midtown isn't really all that safe.

The house has three bedrooms and two baths. The main floor has two bedrooms, a living room, dining room, kitchen and bath, all quite clean, with tall ceilings and some character. Upstairs is one large room with a bath. It has space for both Debbie and me to work with ease and be near John, while still giving him space. The third bedroom will give Courtney space to stay when she is in town.

As far as progress on treatment goes, one interesting development occurred yesterday. The intake doctor we have worked with in Seattle called yesterday and gave what I think is positive news, in a way. He said they have been studying his case and think that he may be too "healthy" to be a good candidate for the radioactive monoclonal antibody trial. Since he is in first remission and did not have a clear diagnosis of myleodisplasia before his leukemia began, his risk level is not high enough to "experiment", if you will, on him.

I was a little disappointed with this development, but was encouraged with the added notion that his slow improvement from his first consolidation round would probably lead them not to repeat consolidation again and again, as is done with many traditional patients. Instead, they will probably go straight to ablasion of his marrow with chemotherapy and radiation, followed by the transplant. If he does relapse in the meantime, the trial would be available as a back up procedure. All in all, I think having him do well is better than the alternative of being sick and able to do the trial.

There is another trial under way that John could decide to participate in comparing actual physical marrow transplants with the less invasive stem cell infusion that is given him through a transfusion. All that is for consideration later.

The trial was really one of the two reasons to go to Seattle; the second being the fact that it is the best transplant clinic in the world. I personally think having the trial as a backup treatment still makes the decision to go clear. Still, it's yet another small bump on the roller coaster.

For some reason, Seattle asked for blood from the parents for typing. Parents are rarely good donors (unless they are cousins!), we aren't at the best age for donors and John has three "perfect" matches already. We took care of that yesterday though and I sent the samples out overnight.

We hope to hear more from Seattle tomorrow. For some reason, the insurer hasn't yet given approval for the transfer, I don't think that is delaying things, at least much. The protocols are that once insurance has been established, they contact the National Bone Marrow Center with the selected donor choice. The NBMC then contacts the doctor or clinic the donor was tested through and check on his (in this case) availability and continued good health. The donor then becomes the time question. I don't expect to be given a date tomorrow, but maybe we will have some better sense of timing. John could certainly use something to plan and look forward to.

9:06 AM | Permalink |

Cadenheads

9:01 AM | Permalink |

Seattle House

8:59 AM | Permalink |

Friday, March 18, 2005

Day 119

On Wednesday, with some persistence, I was able to get Emory's coordinator and confirm that she had (or at least right after the call) sent the detailed HLA typing to Seattle. The Seattle coordinator confirmed receipt and added that the typed donors were all three "perfect" matches at the same level of detail that they check there. She said the doctors would review the typing as well and then she could start the process, adding that she understood our urgency and, while the process take about 6 weeks to prepare the donor and recipient and complete the transplant, she would do all she could to speed things and would keep us informed.

It's Friday night here, so I tried to see if there was any news, but she is already gone for the day. It will be Monday then, before we hear more from them.

Debbie is doing the heroic act of flying to Seattle Sunday morning and returning on the red eye Monday night. We have two seemingly good choices for housing near the clinic. She is going to check them out, call John and me and lease one. Then she is going to get with the kind sould who has offered to loan/sell us a car. Early Monday she will select furniture from a rental company she persuaded to open early. If she has time, she is going to scope out one or more of the several offices that have been offered to us in law firms around town. (There are advantages to being married to an ABA leader who has a lot of past favors she can call in. Of course, being married to Debbie is a good thing in itself too.)

For now, it is more "hurry up and wait." The slowness of the process and lack of information seems to make John more pensive at times. It has to be much more frustrating and worrisome to him than to me.

6:36 PM | Permalink |

Wednesday, March 16, 2005

Day 117

Sometimes I wonder. Eight days ago, Tuesday of last week, John told Emory that he wanted to transfer to Seattle. On Friday, the transplant coordinator had him sign the transfer papers, the same day that his doctor urged him to get started on treatment in Seattle no later than this week.

I confirmed with our insurance about the transfer that day and contacted Seattle first thing Monday. His new transplant coordinator was out for the day, but I did get a call from someone else, though she could say nothing more than I should expect a wait of two to three months, but I should get a call back the next day.

When Seattle didn't call Tuesday I called, couldn't get past voice mail and then emailed two doctors and the one nurse we had talked to. Wednesday afternoon, one of the doctors suggested I talk to yet another person. She wasn't the right person, but she did connect me to the new transplant coordinator.

She really did try to be helpful, and told me a few things, but left me with no assurances other than that she would be getting back with me soon. She did go over John's file with me and I wish I had a word for what I learned.

It turns out, first of all that his coordinator at Emory did not fax his donor transfer until Tuesday, four days after he signed it. As of this afternoon, it still had not been processed at the NBMC. This meant that Seattle still could not start on his case and it also left the transfer at the insurance company open. Five days - the same period it took me to get a doctor at Emory to talk to me when John first was sick.

To add insult to what I hope won't prove to be injury, Emory's person, and I don't intend to give a name, didn't include the detailed HLA information on John's possible donors in what was sent this week, so Seattle still has no real sense of whether John has a possible donor.

Even though this is a person's life at risk, that much might be forgivable. What is worse is that the same person lied to us three weeks ago when we called while sitting with the doctor in Seattle. We asked why the person hadn't sent the donor information and were assured us that it was being faxed that very moment. It was never sent.

John has been rightfully anxious about following the doctor's advice and getting started on treatment. It was hard to explain that some of those he has trusted with his life could delay this way and then lie about it. It makes you wonder.

8:21 PM | Permalink |

Tuesday, March 15, 2005

Cadenheads

5:33 PM | Permalink |

Day 116

Not much has happened in the past week to report concerning John. His health is "good." He has been working on the finale to his webcomic and testing a new one that involves drawn characters in stylized digital photo settings. It is very creative visually and has a different tone to the story line.

Debbie and I have been picking a place to "live" in Seattle. We have two possibilities, one within walking distance of the clinic. I think she will fly out on Sunday to pick one and furnish it. We have been offered a loaner car from a friend of a friend and she will make connection on that as well. There is a lot to do here in getting ready, as well, but we are managing, and it is easier to deal with when the reason for the effort is a hopeful one.

Dr. K has urged John to get started on his new treatment as soon as possible, next week, in fact. It has been 12 weeks since his last chemo treatment, and he carries the twin risks of relapse and infection. It took a week to get the paperwork done to transfer his donor search. With that done, the Seattle people will need to evaluate the results and establish a schedule.

I sent word to the intake staff person yesterday about Dr. K's advice. She was out for the day, but another person called back at the end of the day. I appreciated the effort, although she knew little about his case or file. She said it normally takes several months to get someone into preparation for a transplant, which could be too long in John's case. I sent an email last night to the doctor in charge of the trial asking if he could help expedite the process. I hope to hear back today.

The medical world seems so complex today that it is easy to become just another card lost in the shuffle. No one is really in charge and if the process breaks down or someone needs something out of the ordinary, the patient or his family has to step in. With all the miracle treatments, one-on-one care is still important, but not always there.

On the good news, Courtney plans to come to Seattle after the term and stay. It will be good to have her there and a help as well.

5:46 AM | Permalink |

Tuesday, March 08, 2005

Day 109

I sent this message out to a number of close, and a few new, friends as an update on John and his leukemia progress. I share it for what more it might add, if you are following along. One or two have their own similar family reasons to share in the ups and downs of dealing with diseases like his, and I appreciate all the thoughts and encouraging words each has shared.

John progressed well after his initial chemotherapy, but was hospitalized for several weeks after the second, as a result of an infection and other reactions to the treatment. He has recovered slowly since then, but has been able to be here at home for a couple of weeks now.
John has agreed to participate in a clinical trial at the Fred Hutchinson Center in Seattle and we will be leaving for there soon. If you don’t know, this center basically invented (actually reinvented) bone marrow transplants and is the leading place in the world for what is still a work in progress. The trial will use radioactive monoclonal antibodies (I can tell you more about that than you want to know if you ever have trouble sleeping) in lieu of more traditional massive doses of chemotherapy and total body radiation prior to his transplant. John has three matched marrow donors identified and we are hopeful that we can move quickly into the process. All in all, all this is encouraging news.

Debbie will be commuting between here and Seattle during our stay, which we hope will be 4 to 6 months. I will let you know how to reach us, once I figure that out myself.

Several weeks ago, John started a “live journal” online about his progress. It is mostly directed to his friends, but you might find it entertaining.
http://www.livejournal.com/users/johnvscancer (The hair in the picture is not really his!)
Since he doesn’t talk much about the disease, I followed suit and you can find more boring updates at
http://randycadenhead.blogspot.com
Thanks for your thoughts, care and encouragement, all of which means a great deal.

9:28 PM | Permalink |

Monday, March 07, 2005

Day 108

Dr. K told John he should commit himself to whatever decision he makes on where to get treatment and he has decided to go with the trial in Seattle. That seems like the right decision to me - why not go to the best clinic in the world and receive the newest treatment offered? Lots of reasons, of course, but it still makes the most sense.

I will call them today and start the process, so we can get him started as soon as possible. I suspect that will take several weeks though. In the meantime, there is the possibility of relapse, and, more likely, infections. Fungal infections are the worst of the risks. When your immune system is compromised, a fungus can take over inside and threaten your life. I read of one patient who was ready for a transplant and got a fungal infection that lodged in his liver. It took a year to cure.

Anyway, that's the choice and now we have a lot to do.

6:05 AM | Permalink |

Saturday, March 05, 2005

Day 105, Part 2

We met with Dr. K in the afternoon and he was his usual thoughtful self, saying, in essence, that Seattle was an excellent program and the trial well founded. He told John that he needed to decide soon, but he needed to be committed to his decision, whatever it is, trust his doctors and dedicate himself. He said not to let the details of living in a different place get in the way, because if things go well, he can return here for long term care.

He simplified the questions about the trial by discussing the toxicity of the treatments used to treat leukemia and the apparent benefits of being able to focus directly where the treatment is most needed. He explained about how peer review is done on trials and even went into some of the history of bone marrow transplants. He added that Seattle invented most of the techniques for treatment and does more transplants than anywhere else.

I'm thinking John has probably decided Seattle and the trial are the way to go, but he hasn't yet committed himself to the decision. He does need to decide soon though, because of the risk of infection, especially fungal ones, which are so hard to cure, and the possibility of relapse.

The news on his blood counts is good. His white count continues to improve, although he will need a transfusion on his next visit. There is also a formula for calculating the level of various blood components and he has now reached the point where they allowed him to leave the hospital after his initial round of chemo. What took days required two months this time, but he was allowed to eat a salad last night, something I suppose you crave most when you can't have it.

7:43 AM | Permalink |

Friday, March 04, 2005

Day 105, Part 1

First thing yesterday, Seattle time, I got a call from the doctor heading the radioactive antibody trial there. I suspect the first thing he did when he returned to town was to call me. We didn't connect until 5, but that's pretty good service for a doctor in these days of "managed care" (a term that should be added to the list of oxymorons). He was familiar with John's case and very helpful in explaining the history, rationale and pros and cons of the trial.

Basically, they have tried forms of radioactive particles attached to antibodies for many years. About 10 years ago, they started focusing the approach on leukemia as a way of getting enough radiation to the right places to perhaps cure the disease with less damage to the rest of the body. Until several years ago, they only used this technique in conjunction with traditional chemo and total body radiation - adjusting suspenders while still wearing a belt.

About 3 or so years ago, they decided to rely on the antibody approach, with minimal chemotherapy, on patients that were too old or ill to handle large amounts of chemo. They have tried this with about 35 patients and had good results. From what I've read and heard, "good" is a relative term. All but 4 patients have been over 50 and most have had problems that prevented use of lots of chemo, such as heart conditions, liver damage and such. From what little I've found about the earlier trials, they have had patients die from relapses, complications, infections and other things, but overall, they think the results have been a significant improvement on the current standard, which is basically to nearly kill the patient with chemo and total body ratiation, in hopes that the leukemia dies first.

Here, they are able to leave the patient well and strong enough to fight off some of the things that kill them because they are weak. The results have been encouraging, but the doctor was still cautious because of the small number of patients and the short time they have been trying this without massive chemo. I believe the longest, so far, that anyone has survived disease-free after this has been 15-18 months and still going. In the long term, having less chemo could also help avoid things like secondary cancer caused by the treatments.

If you think about it, unpleasant as it may be, the current approach to treating leukemia is the "modern" equivalent of blood-letting. In fact, they still actually do that for a few patients. Given the concept and the marginal success rates they have, 30 to 50% for AML, it makes sense to look for ways to attack the leukemia more directly. This treatment does kill all the marrow stem cells, thus requiring a transplant, but with John's dysplasia, that would be necessary anyway.

We meet this afternoon with Dr. K to get his perspective on all this. I'm sure he is familiar with the process and his opinion counts a lot, especially to John. I think his input will be the last factor to consider in deciding where to do the transplant and what process to use. He will have a letter from Dr. Maris to discuss. I do wonder, however, at why we weren't given a copy of the letter, which seems an odd sort of ettiquite to me.

I asked the doctor from Seattle if he had seen and had any thoughts about the donors that have been identified. He hadn't seen the information that was supposed to have been faxed while we were in Seattle, and I got the impression that it wasn't in the file. He said that clinics don't usually comment on such things until a case has actually been transferred. The ethics of that seem odd to me.

Anyway, we will know more by the end of today.

8:25 AM | Permalink |

Hope is the thing...

Hope is the thing with feathers, that perches in the soul... Emily Dickinson