Sunday, August 31, 2008

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 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.

Saturday, August 30, 2008

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.

Friday, August 29, 2008

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.

Thursday, August 28, 2008

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.

Tuesday, August 26, 2008

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.

Saturday, August 23, 2008

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. 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.

Thursday, August 21, 2008

The Only Constant is Change

Once again things have changed. The transplant has been moved up from September 7th to September 5th, which we found out about it today as we meet with our transplant coordinator. I'm not sure what prompted the change but apparently it was decided on several days ago. I guess however, from our perspective the actual date of the transplant makes little difference because once we are in the hospital on the 29th and the chemo starts we are committed. A shift of a day or two once the preparatory chemo is underway really doesn’t change anything.

We did find out some things about Ann's donor:

She is a 33 year old female.
She is in good health.
She is has a B+ blood type.
She has elected to donate bone marrow instead of peripheral blood stem cells.
She will be donating marrow the same day that Ann is ready for transplant.

Her donor center allows us to make contact with her. Anonymously at first, then after a year we can meet her face-to-face.

In other news today:

Ann had blood work today that showed a strange result. Bear with me as I try to explain. Tuesday her WBC count was 0.1 K/uL, so low in fact that the pathologists canceled a differential count because there simply weren't enough cells to count. Between then and now Ann has been getting a 300mg shot of neupogen twice a day (morning and night) to stimulate her white cells to grow. As a result she has been having pretty constant bone pain in her hips and legs. That’s a indication that the blood cells are reacting to the neupogen and are maturing neutrophils that are migrating from inside the bones to the circulating blood pool.

So today (two days later) Ann's white count increased to 0.5 K/uL which Dr. Thomas indicated to us was a big jump. This time pathology did do a differential count on the white cells and they turned up a grand total of 25 cells for their sample. Of these 25 cells 20% were lymphocytes, 8% were neutrophils, 64% were monocytes and finally 8% were blast cells.

Dr. Thomas believes that the blasts are due to marrow regeneration. Normally during marrow regeneration only 1% maybe 2% show up as they are shoved forcibly out of the marrow nursery by adult cells pushing energetically to get out into the blood stream. She further believes that the higher than normal percentage is a result from the low amount of cells available to sample. Normally a manual differential is done with 100 cells on a slide. In this case they used 25 white cells, so 8%, or 2 cells looks like a bigger than normal percentage.

In addition she also pointed out that in previous situations where marrow regeneration showed a small percentage of blasts present Ann's counts had all but recovered. In this case 0.5 K/uL is nowhere near recovered. she backed this up by canceling a bone marrow biopsy the stem cell clinic had requested, because she said Ann's marrow would be empty. So we may just be seeing the beginning of the regeneration process and not sustained rate of blood cell production. Just to be sure she has set up a few more blood draws for next week before we see her for (hopefully) the last time next Tuesday.

Too boot Ann's twice-daily shots of neupogen have been cut to once-daily. She's relived and looking forward to not having to try to sleep through bone pain all night anymore.

Right now we re sitting in the transfusion unit as Ann gets a unit of platelets and two bags of red blood cells. Her platelets and hemoglobin were both at critical levels. As always it is taking forever because the blood bank is running short of everything this summer. No matter, Ann has discovered "Becoming Jane" on the MDA movie channel and is deeply enthralled.

Wednesday, August 20, 2008

I've developed a disturbing new habit. For the last few nights, I've "woken" up and started having random conversations with Chris. I know that I've done this before, but very infrequently. The night before last, Chris says I did it four times before finally settling down. Last night, I woke myself up having a conversation. Chris was sound asleep, and I was grateful not to have awakened him. I usually don't have any recollection of the act actually having happened.

Could it be happening because I'm repressing some form of anxiety? Maybe, but I don't think so. I'll admit that I'm not keen on being the first person to be transplanted a second time using this protocol. You generally want to be first at something else, preferably something competitive. We'll see if I continue to do it.

The first appointment of the day was for a bone marrow biopsy, but my leukemia doctor recommended against it yesterday. She said that my numbers were consistent with someone who's marrow would be empty and that I should be spared the procedure. I really do love her. We stopped by the stem cell clinic to see if my transplant doctor would mind rescheduling the procedure for the end of the week, to give my counts a chance to bounce back. Done and done. Did I mention that I love my team?

We saw Dr. Kebriaei and went over what was going to happen next week. It was fairly routine. Our only other appointment was something of a mystery. It was listed as "ITT consult, pre-procedure". It turned out to be a ten minute video on what would happen when I got my new CVC line placed. That's right, my picc line is coming out and a new line is being placed in my chest. Since I've done this once before, I asked for a little conscious sedation. I've had it both ways and believe me, when someone is threading a long wire into your chest, you want to be relaxed. There's also a bit of strange pressure in your chest when they thread the line over the wire. It's not a "scary" procedure, but having a scalpel applied to my chest makes me just a wee bit tense.

Tomorrow is a full day of appointments, so I'm going to do my best the sleep the night through.

Tuesday, August 19, 2008

All of our appointments ran on time today, which left me a little flummoxed. My numbers are where they were expected to be, with my wbc count so low that they didn't bother to do a differential count. My magnesium was low, so I got to take home an intermate infusion. My phosphorous is high, so I've been encouraged to get more fluids in.

This morning's blood draw was a little unnerving as I had to give 16 vials of blood. I haven't had to give that many since my new patient work up last year. Although I do have a picc line in my right arm, I have to give samples the old fashioned way for particular tests. This means that I have the most attractive needle marks near the creases of my elbows. I often wonder if years from now, I'll make up some sordid story about how I acquired them, a la Roger from American Dad.

My heart rate was significantly elevated when my vitals were taken this morning, which alarmed Chris. It was somewhere in the 140 range. The nurse waited a few minutes, then checked it again and it dropped down to 120. I normally fall between 88 and 100. Our doctor explained that it's not unusual considering the chemo I've been given and the steroids, etc. Being anemic can also cause this to happen. Who, me?

I'm just a little tired today, but otherwise feel like myself.

Monday, August 18, 2008


Okay, I have new dates. I'll be admitted on 8/29 and then the transplant is on 9/7. Close enough.


We have a date! I'll be admitted on 8/27 and the actual transplant will happen on 9/5. Talk about being on the fast track.

Sunday, August 17, 2008

Crashing Counts

When we saw Dr. Thomas last week after Ann got out of the hospital, her white count was riding around 9.8 K/uL about 90% of which were neutrophils. Post chemotherapy you would expect a reduction in the white count, because cytotoxic drugs kill leukocytes but in Ann's case she was experiencing a gradual rise. I was curious about the contradiction, so we asked Dr. Thomas about it.

It turns out that the modified Hyper-CVAD protocol Ann is getting is heavier on steroids that when we did this over a year ago. Some of which cause a temporary increase in the WBC count. As Dr. Thomas explained, this increase is quickly followed by a massive die off as the chemotherapy drugs begin to work. The exact timing of this shift from production to reduction varies from person to person. So normally the clinic adds extra appointments to monitor the person's blood work until the counts begin to recover.

Yesterday we had one of those extra appointments, and sure enough Ann's counts not only dropped they crashed. In fact her counts crashed so hard that the pathology lab had to check her blood sample twice to make sure she was OK. Most of the time I can tell if there is a problem, because the turn-around on MDA's tests is normally super fast. Any delay suggests that something isn't right.

When the results finally did turn up they showed that, along with a general reduction in all counts across the board, her WBC count had dropped to 0.3 K/uL. The most interesting result however, was that her RBC count came back as "undetectable" while her hemoglobin was registering at 10.3 G/dL, which is well above the level for anemia. Also her platelets were on the border line (20 K/uL) so they set up a transfusion of two units.

So most of yesterday was spent waiting for results or getting a transfusion. I'm much more concerned about what is going on in the Stem Cell Clinic right now. The old anxiety is starting to creep back in because we haven't heard anything. Last time we talked to Dr. Kebraei she told us that they were working on arranging a date for the donor to come in and donate. That implies that the donor agreed to donate and has tested as healthy enough to do so. I forgot to ask if that was specifically the case though.

I don't want to hound the Stem Cell Clinic for answers, but last week we were on a three week count down. Next week it will be two weeks left. I really think we need some kind of update on how things are moving along.

Saturday, August 16, 2008

I woke up with that same old feeling lodged firmly in my eyes. They feel dry, but they're constantly streaming tears. My nose is running from the copious amounts of tears. I'm starting to get light sensitive, or rather if I try and focus on anything for more than a minute, my eyes start to hurt just a bit. Hurt might not be the right word. They become uncomfortable. I'm constantly irrigating with natural tears which brings immediate relief for just a moment.

I need to go get ready to leave for labs. We'll see what happens next.

Friday, August 15, 2008

Hooray! I managed to only wake up once last night and was able to go right back to sleep. I slept in until 8:30 which is a record for the last two weeks. Naps are a different story. I can manage 30 minutes before popping awake. I would have killed for this ability in college when sleep was in short supply and you had to get it where you could. Now I have the luxury and the need for naps, but not the ability. There are worse things.

I've been out of the hospital since Monday, but have been continued on steroid drops on my eyes due to the Ara-c issues that I have. Since this was an even round of modified Hyper C-VAD, I received Ara-c, also known as Cytaribine. Last year I developed the worse case of Ara-c toxicity of the eyes that my opthamologist had ever seen. My eyes sealed shut and I was unable to see for a little more than two weeks. My leukemia doctor only wanted me on the steroid drops for 7 days. I've done this route. Temporary blindness ensues.

The Pharm-D in the hospital looked up Dr. Kim's notes and she'd had me on the drops 4 times a day for 7 days, then twice a day for 7 days. Today my eyes got that familiar dry, gritty, you've been sprinkling your eyeballs with powdered glass feeling. I've been religiously using natural tears to irrigate my eyes, but I suspect the little bottle I was prescribed has preservatives in it. They dry your eyes out eventually. Chris made a run to the drugstore to get individual preservative free drops. They're doing a much better job. I'm just going to keep towing the line and hope for the best.

I have labs tomorrow and a nurse review. If things go as they have in the past, we'll be there all day due to technical difficulties. That's fine. It's better than being attached to an IV pole with your underwear hanging out of the back of a badly fitting gown, while being force fed saline.

Chris is having some computer problems, so we might not update while we're in clinic tomorrow, but we'll have something up by the next day.

Thursday, August 14, 2008

Wednesday, August 13, 2008

A little jittery

It's strange how I managed to sleep in the hospital with all of the shenanigans going on around me, and yet sleep I did. Of course, it probably didn't hurt that I was getting Zofran and Phenergan which tend to put me out. I'm only mentioning all of this because I've been back at the apartment and can't sleep. That's right, I'm wound up from all of the Dexamethasone I had to have to help protect my heart from the Methotrexate.

I managed to sleep for a solid three hours last night before I popped awake and couldn't do it anymore. The next thing I knew, my mind was racing with the most inane thoughts that had absolutely nothing to do with anything. Literally. Nothing interesting, just odds and ends skittering around my poor beleaguered brain.

No sleep, plus steroids, plus crashing hemoglobin makes for a miserable me. Okay, not miserable, but mildly peeved. Chris's theory is that the steroids that have accrued in my system are artificially masking my low blood counts. I have to agree with him on this one.

I've been trying to burn off some excess energy, but the most I was able to motivate myself to do was make dinner. Since my sense of taste is skewed it was a little dismal. Chris being the amazingly gracious husband that he is ate with aplomb and a smile. How did I get so lucky?

Tuesday, August 12, 2008

I'm feeling run down from my abbreviated bout of chemo which leads me to believe that it's doing what it's designed to do: seek and destroy. It also feels like my hemoglobin is crashing, so manual labor is out of the question. I'm starting to believe that I will definitely have a transfusion on Thursday to go hand in hand with my outpatient chemo. Of course, every time I think that I'll have to have a transfusion, my hemoglobin is usually a few points above the threshold. Go figure. I'm just an oddball.

My next appointment at MDA is Thursday morning and I suspect that we'll be there all day. All things considered, there are worse things. ;)~

Monday, August 11, 2008

Okay, so I have to ask a favor. Two of my dear friends are currently under the weather and I wanted to ask for positive thoughts and prayers for speedy recoveries.

Nancy has recently been readmitted into the hospital at City of Hope in Los Angeles due to pneumonia. She's been such a rock for Chris and myself throughout our journey and I hate to see her under the weather after all that she has been through.

Susan is still undergoing testing to find out what's going on with her health and like Nancy, she's kept our spirits up and held my hand throughout treatment.
If you have a moment, please send them some positive vibes.
We arrived back at the apartment about an hour and a half ago after an abbreviated stay at MDA. Even though I got less chemo, I reached the half-way mark where I always start to feel a bit run down. I'm nauseated and tired and not really in the mood to do anything active, including pressing buttons on the tv remote. Sad, I know.

I just wanted to check in and let everyone know that so far all is well and I fully expect it to remain so. I get the day off tomorrow, then I'm back in clinic for a visit with Dr. Thomas. I'll have to leave it up to Chris for a longer post later.

Know that I am feeling fine, all things considered and looking forward to sleeping without an IV pole attached to me.

Friday, August 8, 2008

I found out that I had the types of drugs being administered for chemo incorrect. Since this is an even round, I'll actually be getting cytarabin (ara-c) instead of vincristine. Cytarabin is the drug that struck me blind last time around. I have steroid drops that should help prevent this. I just have to remember to put them in four times a day at certain intervals.

Some of the IV drugs require IV pre-meds. One of the chemo drugs, methotrexate, requires a pre-dose of dexamethasone which is a steroid. The idea is to protect my heart from the damage that could occur as a result of the mexthotrexate being pumped directly into my heart.

The thing about the dexamethasone is that it made me throw up the last time I received it. I' had it many times before and it's never bothered me. Last night, I was having dinner while getting infused. Minutes after the bag finished I was violently ill. It seemed like every single thing that I'd eaten for the day was staring back at me from the bottom of a pink bucket. Then my back started to feel like a million vicious mosquitoes were taking little chunks out of me. I couldn't stop scratching. The night nurse checked me over and I didn't have any outward signs of a rash. Rash or no, the itching was hellacious.

Chris's theory is that the first time I went through Hyper C-VAD I was working with my original immune system. Aside from not being able to fight off cancer, it was pretty good to me the first 32 years. My new immune system is fairly untested and we aren't sure of what it's capable of. Now we know it doesn't like methotrexate. My nurse gave me so IV phenegren while we waited for an order of IV zofran to come up from the pharmacy. I instantly felt sleepy when the phenegren finished. It wasn't the kind that I could fight and so I passed out like a darted bear as Chris has said.

Let me back up a bit and explain a second set back that I was responsible for. In order for the methotrexate to be administered, the pH of my urine must be 7. This means that I have to leave samples in the bathroom. I know this has to be done, but I feel really silly using the intercom system to let every one know that I've left a large container full of urine in the bathroom. I was the reason for the delay, yet again. My initial sample was an acidic 5.2pH. I was asked to start drinking a lot of water and a pill was ordered that would help. I dutifully started drinking. An hour later my sample was 5.8pH. At this rate, the bag would never be hung and did I mention I was sleeping in between making samples.

Chris was given the unenviable task of having to wake me up every hour to make a sample. If you've been following this blog, you know that I am the worst kind of monster when someone wakes me up from a deep sleep. Poor guy told me that I was absolutely vicious when he woke me for my 1:10 AM sample. I had absolutely no recollection of this. I also have no recollection of any of the nurses hanging any of my chemo drugs. They're required to have you confirm your identity and medical record number verbally. I also had absolutely no recollection of doing this. I can only hope that I was civil. I pray that I was civil. I know how childishly cranky I can be when wakened from a deep sleep.

I eventually passed the pH test, just barely. A two hour drip of methotrexate was hung, followed by a twenty-two hour bag of the same stuff. It should finish sometime tonight.

I had a lumbar puncture today and it went off without a hitch. The APN was going to do it without ativan and I think that was also my fault. When she came in to introduce herself, she asked me if I needed anything for the puncture and since I thought the ativan was automatically administered, I told her that I was fine. When she came in later to let me know that we'd be starting soon, I asked her when the ativan would be hung. I had to apologize for misunderstanding, since I knew that waiting on the pharmacy would throw her schedule off. She put the order in and I got it thirty minutes later. She did a great job and it was over before I knew it. The samples were absolutely clear which is a good sign.

I was told to lay perfectly flat for an hour to avoid the nasty headaches that can develop because of the procedure. Chris was kind enough to hold a soda at mouth level while I harvested the caffeine to ward off the same headache. The last thing I remembered was watching tv. Apparently, I fell asleep again, a la darted bear, and woke up two hours later.

I've been told that I'll be in here until Monday. Dr. Kebriaei is supposed to be popping in for a consult. We should know more about the transplant then. So, I'm looking forward to a quiet week of getting vital signs taken and taking tons of meds. Sporonox has made it back into the equation. Bleck!

Thursday, August 7, 2008

I had clinic early this morning and everything was fine, so I'm writing this from the comfort of my hospital bed. I'm currently being hydrated in preparation for some yummy chemo. I'll be having a shortened round due to my pending transplant. Dr. Thomas surprised me by saying something to the effect that it could be in three weeks. That's really soon when I stop to think about it.

Last year we were in a protracted fight with my employer and insurance company about whether they would pay for my first transplant. I ended up having five rounds of chemo while we played ring around the posy. That's five months of waiting. Now I'm being told three to four weeks. What a difference a year and being unemployed makes. :)

All jokes aside, I'm happy to be getting round two. It makes me feel like we're really moving forward. It's going to be a late night since I'm getting three different chemo drugs. L-asparaginase, methotrexate, and vincristine. It's ironic that I only realized today that the neuropathy in my hands had receded from the ring fingers of both hands. Crazy. The vincristine will reverse that in short order.

Depending on who the rounding physician is, it may be a very early morning. I'll chalk tonight up to getting back into the rhythm of hospital living. The highpoint is that this should be a short stay and there's nothing wrong with that.
Why on earth would I be up at 5 AM blogging? My magnesium was low yesterday and I had to have a take home IV of it. Actually, my PA was going to schedule it in one of the transfusion units, which would have meant hours of waiting to get in, then hours of waiting to get out. I batted my big brown eyes and asked her for a take home intermate bottle. When she was sure that we knew how to operate it, she agreed. Suffice it to say that Chris and I were pleased to be getting out of MDA early.

Whenever I have to have magnesium intravenously, I suffer a few interesting side effects. They do not come on immediately and at the moment, I've only had to have 2 outpatient infusions, so I always forget what's coming. A few hours after the 3 or 4 hour infusion finishes, I start to get really hot. It's not like when you step outside in Louisiana in July on a sunny afternoon. It's more a sensation of someone having set the inside of your skin on fire. The strange thing is that sometimes it can be in isolated spots.

Right before bed the top of my head started to feel hot. Normally, I would just crank the A/C down for relief. Chris was feeling under the weather, which meant that he was also feeling cold, so the A/C stayed well above 75 degrees, because I didn't want to freeze the poor guy out. I went to bed and pretty much fell asleep instantly. Two hours later I was awake feeling hot. I managed to fall back asleep, but every 2 hours thereafter, I would wake up for a few minutes because I was hot. When I woke up a few minutes before 5 this morning, I just gave in and got up. This means I'll be cranky/wanting a nap while waiting to get admitted. Good times. Luckily, there is a nap room at MDA--genius! Unfortunately, people don't know how to use their inside voices when there.

The last time I was in the nap room, I was lucky enough to snag a couch. I stretched out and started to sleep when a couple took up residence in the recliners next to me. I can sleep anywhere under most conditions, but this couple started to bicker in the way long time couples sometimes can in voices you would use to be heard in a noisy venue. The man wasn't feeling well which I think contributed to the situation--trust me, I fully sympathize, and his wife kept harassing him every few minutes about whether or not he wanted (fill in the blank). As an adult, I'm sure he would have asked for it if he did and under normal circumstances I would have sympathized with his wife. She didn't know what to do, so she was trying everything to help. I get it, but when it's nap time, I'm like a 3 year old. I ended up knitting while waiting for the next appointment. They were still at it when I eventually left.

Tangential stories aside, I plan on sleeping in public today. If you happen to be in clinic waiting with me, I'll be the short, bald woman in the corner, snoring like champ. That's right, I snore. Very loudly.

I need to go get ready for blood draws and other appointments. Cross your fingers that I finally get admitted for round 2 today. Now that I have a tentative transplant date, I don't want anything within my control to delay it. Okay, so I don't really have any control over my recovering liver, but I like to think that I do.

Wednesday, August 6, 2008

Countdown Starts: 4 Weeks to Go

We had another meeting today at MDA with Dr. Kebriaei about Ann's transplant and I have some good news to share with everyone. Ann is still on the fast track for the transplant and it looks like the first round of chemo put her back into a stable remission. The single blast cell, and handful of metameylocytes detected in the last CBC from Thursday, are gone. So it looks like Dr. Thomas' theory about their presence being a function of marrow recovery was spot-on (as usual).

The best news of the day though is that the new transplant is scheduled for 4 weeks from today. According to Dr. Kebriaei, right now MDA is working on arranging a date for the donor to go to their local hospital and donate. By implication that means that the donor has checked out as healthy and has agreed to donate again. That came as a bit of surprise to us because we kind of thought things were stalled waiting for the approval letter from the insurance company, which only just arrived Monday but apparently that wasn't the case. It's nice to be pleasantly surprised once in a while.

Our good friend Nancy Sakakura had recommended we get a consultation/second opinion from her transplant doctor (Dr. Nakamura) at City of Hope (COH) in Los Angeles, and we took her up on it. Over the last two weeks we have been talking to Dr. Nakamura about Ann's case and apart from being incredibly generous with his time, he has also provided us with invaluable insight. Without getting into a ton of details Dr. Nakamura is in agreement with MDA's plan for Ann's transplant.

It occurs to me that I have not posted the details of what is being planned for Ann's new transplant. I think for the moment I'm going to avoid doing so until we are closer to the actual event. Suffice it to say it is one of the most aggressive and forward leaning transplants that MDA has EVER tried. It's pretty exciting, because if it works it could form the back bone of treatment for patients who have relapsed after front line treatment. The data on it so far shows that it roughly doubled the survival rate of second transplants. Here's to hoping!

Tomorrow, Ann will go into the hospital for one more round of in-patient chemo - duration 1 week. Then this will be followed up by more out-patient chemo, again duration 1 week. After that, I think Dr. Thomas and Dr. Kebriaei want her to have a two week rest. Then it's on to transplant. Wow! Feels like that's just right around the corner.
It rained off and on yesterday and there was a bit of wind early in the morning, but no hurricane. I know officials were just playing it safe and with all that has happened in the last few years, I can't blame them. The bonus for the guys who work the out patient clinics is that they got an extra day off and didn't have to navigate the roads in yucky weather. I can't lie, I always enjoyed an extra day off due to inclement weather.

I spent the day knitting and trying to finish up one last baby gift. Last night, I was working on a very mindless piece and forgot to put in button holes which means I'll either have to pull it apart and do it again--it only took a few hours--or I'll have to figure something out. I'm thinking that I'll be doing the latter, since I was bored out of my mind the entire time I was knitting. After I sew up all of the pieces and attach the buttons, I'll get a baby project break. I promised the next project recipient that I would wait until she could tell me what sex I'd be knitting for. It wouldn't do to use up my stash of pink yarn for a little boy.

I'm off to get ready for the day's appointments. It's Chris's turn to blog, so we'll see if I can persuade him to do so this afternoon.

Monday, August 4, 2008

Good grief

My leukemia doctor's scheduler left me a message today to let me know that the outpatient clinics will be closed tomorrow due to hurricane Edouard. So, I'm rescheduled to see her on Thursday and possibly be admitted for round two. Hence the title of today's post.

I know all things happen for a reason, but toting around a packed suitcase for a week and a half starts to get ridiculous. I'm debating unpacking it and just going in on Thursday with the attitude that I won't be admitted. Reverse psychology. I show up unprepared and am virtually guaranteed a ticket to the show.

On a more positive note, the letter from my insurance company showed up today. Chris dropped off a copy to our transplant business liaison so the ball can start to roll in the right direction. That's when he learned that no testing has been done on the 9/10 donor and that they haven't been contacted yet. It would seem that we were misinformed or maybe misconstrued some information. All of the info we were given was based on some information from last transplant. Now that the letter is in hand, the hospital where the possible donor is can be contacted. At the earliest, we're looking at a four week time line before transplant. That's if all the stars align and everything goes according to plan. I'm thinking it might take a bit longer. That's fine, so long as I stay in remission and continue to do well.

Too many components. It's like having pieces left over after putting flat pack furniture together. Do you go back and read the instructions, or do you just hope that you did a good enough job?

I'm not bummed about it. In fact, I should be rather pleased that I've managed to stay out of the hospital for so long. I'm just ready to move forward so that I can spend the next 40 or 50 years torturing Chris.

Sunday, August 3, 2008

I just wanted to post to let everyone know that there's absolutely nothing going on. Our next appointment isn't until Tuesday and it's very early in the morning. If all goes well and my liver enzymes have sufficiently calibrated to normal, or close to, I should be getting admitted to the hospital for round two. I have to admit to being a little anxious about the blasts in my peripheral blood counts. I'd be rather pleased if they disappeared since they really shouldn't be there. It's just the thought that if they continue to go up, that means something distasteful and cancery. No thanks.

I did forget to mention that we ran into Aubry and Kelly while roaming the halls of MDA, waiting for my transfusion on Thursday. For those of you who don't remember, Aubry was a leukemia patient at the same time as me the first time around. If you go way back, you'll see pictures of him roping a tiny brass steer. He had a transplant late last year. The same kind I did and he looks amazing. He's got a bit of skin GvHD that he's contending with and we swapped tips and tricks for dealing with it. It was just really good to see them and hear that he's getting closer to normal and able to do some of the things he loves on his ranch. Kelly's keeping a close eye on him, so I'm sure he won't be getting into any trouble anytime soon.

So, aside from making chili, I'm laying low. I did have an "Aha!" moment today and figured out why everything tastes so weirdly sweet. When I have something with an artificial sweetener in it, it taints every single thing that I eat for the rest of the day. So, I've cut out the fake stuff and have made a few modifications. Everything still tastes weirdly sweet, but not as badly as before. I also can't taste umami, which makes me very sad. I live for it. It's like people who crave salt or sweet. I'm hoping it doesn't last for very long, because until it resolves, everything tastes like sweet library paste.

One last thing. My friend, Susan, is suffering with a mystery illness and it's got her sidelined. She's undergoing the usual battery of tests, but until they figure out what's going on, she could use some positive thoughts and prayers.

Friday, August 1, 2008

Antsy, jittery, impatient.

All good ways to describe what I am feeling right now, but mainly I feel like we are stuck. This is our second delay for Ann starting the next round of enhanced H-CVAD. That means we've lost a week waiting for her liver enzymes to fall to acceptable levels so that the next round doesn't do permanent damage. They are trending in the right direction (e.g. Tuesday they where 7 times normal and Thursday only 5), so that seems to be moving in the right direction.

Ann's counts continue to recover back towards their pre-relapse, post-transplant normals as the baby stem cells fight to rebuild their house. True to form they are once again cranking out the platelets (194 K/ul yesterday). The only thing that has not made a significant recovery is the reds, but that's to be expected as they take the longest time to mature of all the blood cells.

We did have a little heart stopping moment yesterday when we got Ann's CBC back and 1% blasts showed up on it. That finding was accompanied by 4% metamelyoctyes also known as neutrophil progenitors. Adding everything up our doctor believes that both of these are products of marrow recovery and not leukemia. Basically, the baby stem cells are reproducing so quickly that they accidentally shoved some cells out of the nursery and into the blood stream that wouldn't normally be there. I should point out that this has happened to Ann twice before. Once during one of her first rounds of chemo back before the transplant and once post transplant.

I would feel better about it if we had a definitive finding like the PCR or FISH tests from her most recent BMB. But they weren't ready as of yesterday, so we'll have to wait until our next clinic visit for them. That will be Tuesday and hopefully by then the liver enzyme issue will be resolved to the point that we can advance forward.