Gustav (Day -5)

Ann's conditioning chemo of busulfan and fludarabine started without much fanfare last night and by the time we turned in things had started to feel a little more normal, in contrast with the rocky start we had gotten off to. This morning we woke up to the latest crisis du jour in the form of hurricane Gustav.

The interstates have been contra-flowed out of Houston and the local news is starting to report on gas shortages. From up on the 10th floor of MDA you can hear the periodic wail of police and ambulance sirens. I imagine that all the patients in the surrounding hospitals that can be evacuated are being sent to safety. MDA is doing likewise and considering putting it's ride-out team into place. The ride-out team is the skeleton staff of nurses and doctors that will operate the hospital through the storm while the rest of the hospital and clinic staff evacuate to a safe distance.

In theory this shouldn’t effect Ann's transplant, which at this point can't be stopped because the chemo has already started. The only thing that worries me is that if the storm were to shift its track a little more west and maybe slowdown a bit. That might make it impossible to get a flight into Houston which, could delay the delivery of the donor's marrow and jeopardize Ann's life!

As an aside: I have studiously avoided political commentary on this blog but, after seeing this on the net today I felt compelled to speak out. The two videos below illustrate some of the most callous and outrageous behavior I have ever witnessed. The first video is of Ex-Democratic Chairman Don Fowler who actually thinks it is funny that a hurricane is going to hit the gulf during the GOP convention. The second video is of Micheal Moore who muses, "I was just thinking, this Gustav is proof that there is a God in heaven...to have it planned at the same time – that it would actually be on its way to New Orleans for day one of the Republican Convention".





I do not disparage people for their political positions. We live in a free country and everyone is allowed to adopt their own views, values and beliefs. However, there is something unseemly, I would go as far as to say vile, in publicly wishing for the harm of millions of people so that one political party can score "points" over another.

Just to put it in perspective in relation to the subject matter of this blog...there are dozens of patients here at M. D. Anderson and probably more throughout the gulf, waiting for transplants, of which my lovely Wife is just one. Virtually all of those transplants depend on medical flights which could be grounded because of the storm. All of their lives could be endangered because of this.

Moreover, there are tens of thousands of people who still have not fully recovered their lives after Katrina hit three years ago, and have precious little in the way of resources. Chuckling that one political party is on the receiving end of this is ignoring the very real human disaster that is developing, is no less than venomous and amounts to nothing more than actively wishing harm on people just like Ann and me.

I'm very happy to report that I managed to get admitted around 11am. There were no available rooms on the BMT floor, so I was placed on the leukemia floor and will be moved as soon as a bed upstairs becomes available. I'm also very pleased to report that I haven't been hooked up to an IV pole yet. Hospital vets can tell you what a pain it is to drag that thing around with you, especially when it's potty time. Too many lines to get tangled and they're all connected to you.

I've been given a starter dose (6 pills) of dilantin, which is an anti-seizure drug ahead of receiving chemo. I'll get a smaller dose in a few hours and then at 7pm I'll get my first dose of fludarabine and then an hour after that I'll get busulfan. The rounding transplant doctor reassured us that I'm still on track to get the transplant on 9/5.

That's all I have to report for now.

Admission delayed

This morning, while I was flossing, I either lost part of a filling or broke off part of a tooth. All I know is that I was removing some floss when I heard a pinging sound that turned out to be a dental fragment hitting the porcelain sink and falling down the drain. Previous experience told me that something had gone horribly wrong. A quick inspection of the newly flossed tooth revealed part of it missing.

Many frantic calls were made to my doctor only to discover that she had taken the day off ahead of the long weekend. My transplant nurse consulted with my PA who didn't think it was a big deal. Right. It wouldn't be a big deal to me either, except I'm scheduled to have massive doses of chemo over the next few days and I have a date with a bone marrow transplant on the fifth. Chris tried getting in touch with the MDA dental clinic only to discover that my Houston dentist has been gone for the last three weeks and won't be back until 9/2. Arghhh!

Chris made a few more calls to my transplant nurse who conferred with the doctor who's covering for Dr. Kebriaei. By way of my nurse, he instructed us that he's sent people to transplant with far worse complaints than mine. Super. All parties involved instructed me to inform the admitting nurse of what's happened to possibly get a consult scheduled with my dentist. Double arghhh!

We followed up all of this delightful advice by heading into MDA to get some labs drawn and have my CVC bandage changed. In a nutshell, the labs went well, but the bandage change hit a small snag. When the nurse changing my dressing removed the original bandage, it tore off some skin. I didn't feel it when it happened, but when she began cleaning the site with alcohol and iodine I started to suspect something. The burning, stinging sensation clued me in. She changed the type of bandage to compensate for this and I'm hopeful that its adhesive and my skin can play well together.

After this little adventure, we headed down to the admissions lobby with all of our loot ready to check in. When we got there we were told that the stem cell clinic hadn't faxed over my orders and that they wouldn't be ready until after 6pm. It was a little after 3:30pm. I told Chris that we might as well head back to the apartment and we were just preparing to do so when the young woman at the admissions desk called out that my papers had just been faxed over.

We settled back in and waited to be processed. Roughly half an hour later someone came out to inform us that there were absolutely no available hospital beds and that my doctor was being paged. Forty-five minutes later we were told that I'd have to come back on Saturday to be admitted. Needless to say, Chris was ready to explode. In his defense, it's been a really stressful day with all of the phone tag and dental drama. When I asked what time I should come in, I was told to call at 9am to get an estimate. Grrrr.

According to my schedule, today was to be devoted to hydration and day two was dedicated to getting busulfan and fludarabine. In the hopes of staying on schedule, I've been hydrating like crazy. I don't know if the transplant will still be on 9/5 or delayed by a day. I'm hoping to know more tomorrow. Until then, I'm going to do my best to relax and hope to get a good night's sleep ahead of what might be another stressful day.

Today began with an appointment to have a central venous catheter placed in my chest. Since I was feeling a little skittish about having a scalpel applied to my chest, the infusion therapy nurses had two syringes of veracet waiting for me. There was a brief argument about which side of my chest the catheter would be placed, mostly on my part. I wanted the contraption placed on my left side since that's where it was last time. Call me vain, but I wanted to keep all of the scarring on one side. It was because of the scarring that I lost the argument. Once this matter was settled, a disagreement arose as to how much veracet I would get.

I am a small person, I know this. I am also a rather stout small person, so I tend to fall into that nether world of petite and sturdy. The head nurse felt that one syringe would be enough to relax me, but I felt otherwise. We reached a compromise in which I would take one syringe and wait to see if I still wanted the second one. One was enough to take the edge off and I decided to be a big girl and proceed.

Since the catheter was being placed on my right side and I already had a picc line in my right arm, the nurse had to pull part of the picc line out without totally removing it. Even though I was mildly sedated, watching part of the line being fished out of my arm still nauseated me. It was hidden under a bandage while the nurses proceeded with placing the CVC.

Today, I learned that I was born with a unique complication. The big vein in my chest on the right side is very deep under my chest tissue and it lays flat. I know this because the IV nurses were using ultrasound to place the line. The vein also lays very close to the big artery on that side which made things even more difficult. The fact that the vein was buried so deep and tended to lay flat made things nearly impossible. It also felt like I was being hit in the chest by a fast pitch softball every time they tried to snake the catheter in. After an hour of trying I could hear the frustration of the APN each time my vein disappeared. There was discussion to the effect of getting a different catheter and trying again tomorrow. This was vetoed in favor of getting a doctor in to take a shot at placing the catheter.

I was given the second syringe of veracet which effectively made me not care what happened next, shortly before the doctor arrived. She got it placed on the first try. I was stitched up and placed in a wheel chair due to my spacey state. After a quick stop at x-ray, Chris and I went to lunch.

I don't remember anything from that point on. Chris said I slept while he got food and I only woke up long enough to eat. I must have passed out again, because the next thing I knew, I was having my picc line removed. I have to assume that the x-rays came back okay.

I passed out again as soon as we got back to the apartment. I now feel like a mule kicked me in the right side of the chest. My shoulder aches every time I move and I have to hold my head still, lest my neck moves the wrong way and pulls on my chest. It's a very odd existence tonight. I know this feeling will resolve, but I can't remember how long it takes. On the up side, I think I've finally caught up on all of my sleep.

I have to go back to the infusion therapy clinic to have the bandage changed on my chest tomorrow. I also have a blood draw at 4pm and then we'll be off to see if a room has been made ready for me on the BMT floor. I've already been warned that Friday is the busiest day for hospital admissions, so it could be pretty late before I get in. I'm thankful the apartment is only a few minutes from the hospital. If worse comes to worse, we can just hang out until we get called back.

Playing catch up

I've been a little under the weather, so the blog has suffered as a result. Here's a little play by play to let you all know what's been going on.

I've been having allergy issues for the last few days and they started to manifest as sever sinus headaches. Sunday found me mostly prone due to migraine-like headaches compounded by congestion. I have to believe that the crazy weather fronts have contributed to my misery. If I wasn't sleeping, I was wishing for unconsciousness. The day culminated in projectile vomiting. It was no fun for me and certainly no fun for Chris. On the bright side, my sinus headache abated for a few hours.

Before my relapse, I was taking claritin-D to help with my newly acquired allergies. Since the relapse, I've been all over the board fluctuating between acquired allergies and the original ones that I was born with. As a result, I'm in a constant state of drainage and pressure. It is a very bizarre place to inhabit. I'm a little paranoid about self medicating, so I've been avoiding taking anything that hasn't been approved by my doctors for relief. Since it was a weekend, I decided to tough it out. The whole paranoia thing has to do with artificially elevating my counts. I'm so close to the transplant, I don't want to blow it by taking something that would affect my liver enzymes, etc.

I just had a blood draw on Monday, so it was a very short day at MDA. As soon as we got back to the apartment, my head started throbbing, so I got prone. I managed not to throw up, but the day was a total loss, since I ended up sleeping for most of it.

Today I got the okay to take claritin, so life was much more enjoyable. Turns out I was worried about nothing.

There was a bone marrow biopsy on the agenda today and I'm happy to report that the preliminary results only showed 1% blasts in my marrow. That's well within the normal range. All of my other numbers were also good. My white blood cell count is the same as it was Saturday and my red blood cell count and hemoglobin are holding close to where they were. Platelets are above 50 which means my CVC procedure is still on for Thursday. Hello central line, goodbye picc.

So far everything is going really well and I'm on track to get transplanted on the 5th. How crazy is that? The last transplant was such a struggle and now it seems like things are moving warp speed. I'll be holding my breath figuratively until the big day.

Yet another long Saturday

This morning I packed enough snacks to carry us through a full day and I'm glad that I did. Although our first appointment wasn't until 8:45am, we elected to get to the clinic at 7:30am just to give the labs enough time to process my blood. My lab review was set for 9am and we were pretty sure, based on prior experience, that the labs wouldn't be able to achieve a fifteen minute turn around. They did not disappoint.

My CBC showed up around 11am and it was quite the jump from Thursday. My wbc was 6.1, anc: 4.27, plt: 56, rbc:3.21, hgb: 10. Since there were 8% blasts in my differential Thursday, a white blood cell count of 6.1 was a little alarming. Since the differential wasn't ready at the same time as the cbc, we elected to wait for it. It showed up a little after noon with no blasts found. Hooray! As usual, Dr. Thomas was right about blasts being present because of marrow regeneration. As a result of my numbers, I don't have to have neupogen shots for the next little while. Although they really aren't a big deal, it gets tiresome to have little red dots appear at every injection site. It always makes me do a double take, because I forget that they're there.

As per usual, my magnesium was low, so I had to take home an intermate. Let me once again say how thankful I am that they're portable.

So, in a nutshell, all is well. Sunday is an off day, so I'm really looking forward to sleeping in. Monday, we hit the ground running, again.

Exorcising a Personal Demon

Lee Van Cleef is one of my all time favorite western actors. I'm sure lot of people will remember him for other roles, but in my book none is greater than his work as Angel Eyes in The Good, The Bad and The Ugly.

I still remember vividly the first time I saw the movie when I was 12. It was a Saturday and I had just come in from mowing the lawn and was fixing lunch. We had a small TV in the kitchen, and I turned it on out of reflex. After surfing around for a bit, the only thing that I found on was one of those movie marathons sponsored by a siding company. The company "presented" the movie and made product demonstrations and took sales calls in lieu of commercial breaks.

I had never heard of the movie they were about to start showing, but I was familiar enough with Clint Eastwood to give it a try. So I started making my baloney sandwich and as the movie started those first few whistles and the chanting of Il Buono, Il Cattivo, Il Brutto that the movie opens on hit me like an electric wire. I was hooked.

There is such a beautiful symmetry to Sergio Leone's movie. The trio of Blondie, Tucco and Angel Eyes are iconic on their journey to Sand Hill Cemetery to find the unknown grave and the gold buried in it. Even its flawed perception of American history, which can be forgiven as poetic license, just draws you further into the epic story. But what really hooked me was that the movie had an honest to goodness first-class villain.

Angel Eyes was ruthless, uncaring and totally devoid of emotion. He was a truly sociopathic killer for whom the ends would always justify the means. He has no back story or explanation for his character, he simply was. You are never allowed to empathize with him. Good stories need good villains to keep them believable and Angel Eyes allowed me to willingly suspend my disbelief immediately. Frankly he is the kind of person I would be scared to death of if I met in real life, because I know he would end up hurting me.

So why am I telling you all this? After all, this is a blog about my Wife's struggle with a life threatening disease, and not a movie review. Simple...today I figured out that Ann is not the only one here that is sick. I am too.

I have developed a tremor in my right hand, and have had increasingly "uncomfortable" dreams. Most nights I defer all but a couple of hours of sleep in an effort to avoid being a victim of my subconscious. I can't control it, so avoidance has seemed like the best alternative.

So what does a character from a Sergio Leone spaghetti western have to do with that? I have started having a extremely vivid recurring dream that goes like this...


I'm in the first apartment Ann and I ever lived in together.
The walls in our bedroom are a royal deep blue color and the baseboards are stark white.
I can smell the fumes in the air. I know the paint is new.
All the furniture (bed, chairs, etc) have all been removed from the room.
A bright shaft of sun light comes in through the bathroom door to my right.
In front of me is a pocket door that leads to the living room and it's closed.
I can hear our small air-conditioner unit humming behind me.

I start to walk towards the closed door, and as I approach it slides open.
Angel Eyes is standing there with his broad black hat and smoking a cigarillo.
He casts his tobacco on the ground.
As he rubs out the ember with a twist of his boot his jacket opens and I can see his pocket watch and pistol.
He looks like a rooster scratching a dance in the dirt.
He smirks wickedly at me and says, "This will break you".
Then he turns and walks out of the room.

I want to follow him, but I cant.
I become hungry and begin to feel weak.
I notice my hair beginning to fall out in clumps.
I lean on the wall to help me stand but, slide to the ground instead.
The hunger is almost unbearable now and it really hurts.
I open my mouth to cry out for help, but as I do my teeth fall out onto my lap and the floor.

I know I am dying.
I want to get up and save myself but I'm too weak.
The pain becomes almost indescribable and I begin to lose focus.
I look up and Ann walks in through the door.
She looks like the day I first met her, she is beautiful and perfect.
She crosses to me, bends down and takes my hand.
Her skin feels cool.
"Are you ready?" she asks me.
I can't answer, but she smiles and helps me to stand.


There you go. That’s the dream I have been having since Ann relapsed. I don't know what it means, but it troubles and frightens me. Much more so than some of the others I have had since Ann was diagnosed.

So I have decided that next week I am going to try to find a psychologist near MD Anderson who can talk to me. While Ann is in the hospital for her transplant she will be in safe hands, and I will be free to make an appointment or two during the week. For the record I normally wouldn’t post this, and I'm still having second thoughts about it, but this blog is about our struggle. As much as I am loath to admit it, the situation has taken its toll on me too. If I'm going to keep fighting for Ann then I need to find a way to, if not get better, to at least keep myself from getting worse.