Rougher This Time

Ann got released from the Hospital on Sunday just like Dr. Andreef predicted she would. Today was our first day of out-patient therapy/monitoring and apart from Ann needing potassium and magnesium it was pretty un-eventful. Unfortunately today also served to deliver more evidence that this transplant has taken an even larger toll on Ann than the first did.

I remember a year and a half ago when Ann and I used to almost, literally "bounce" on our way out of MDA after our out-patient visits. That’s not the case now. Today Ann had trouble walking at a moderate pace out of MDA, and we had to stop and let her rest for a minute. After catching her breath we proceeded out of the clinic with no other incident.

Ann says that it is just "rougher this time", and its just going to take time for her to build her capacity back up. I believe her and if anyone can do it I know she can. It still hurts to see her struggle with what was once effortless.

I had my triple lumen CVC exchanged for a double lumen CVC this morning and just to make things interesting, they didn't sedate me. Believe me, I feel like I've been stung in the chest by a nest full of hornets on top of being kicked by a mule. Those IV nurses certainly have a sense of humor.

My APN delivered a bit of devastating news to me today and I was not pleased. If I don't start consuming more solid food and liquid, they will not let me out on Sunday. I made the argument that being trapped in a hospital room was wreaking havoc with me psychologically and that if I were released, that they'd see improvement. They weren't having it. You try eating from the same menu for over a month and see how you do. I know my friend Nancy was in the hokey for over 80 days and I don't know how she managed it.

Yesterday, I gave the team another scare when I went for a walk and ended up back in my room with a tight chest and the absolute inability to breathe. In my defense, my hemoglobin was 6.9 and that's critical. I received a unit of blood, but I don't think it was enough. There was talk of putting me on oxygen and holding me for observation. If I have to make a shiv out of my disposable stethoscope to get out of here on Sunday, you better believe I'll figure it out.

Argghhh, food tastes funny no matter what I do to it. It's not the metallic taste I remember from days past, but more of a medicine flavor that is identical in everything that I try. I have to be able to eat solid food in order to get out of here and that wouldn't be a problem if it all didn't taste like pooh.

I cornered Dr. Andreeff today on when he'd be willing to let me go. He conferred with his team who all agreed on Sunday. So close, yet so far. On Monday, he was willing to jettison me on Wednesday. Of course he got vetoed because I was still hooked up to the PCA. I keep getting told to take things slowly and that's all fine in theory, but a patient person I am not.

I had a bit of an upset yesterday that I was really worried would hold me back. I couldn't stop vomiting and you don't want to know about the diarrhea. Nothing that I was given via IV helped with the nausea and I only managed a pitiful 3 hours of sleep last night due to side effects from regulan and compazine. I'm considering a nap today, but we'll have to see. I have a few things on the agenda like vital signs and getting my CVC bandage changed.

I'm too tired to ramble anymore so I'll leave everyone with my thanks for all of the prayers and positive thoughts and wishes. I hope I'm doing you all proud.

Engraftment

Day +17

A picture says a thousand words...





Ann is now officially engrafted. The new donor code named "0736" has fully taken over the duties of producing white blood cells. The reds and platelets will take a little longer, but should start appearing in a month or so (if all goes according to plan).

Sorry for the tardiness of this entry, but MDA's wifi (or airport if you have a mac) is working in the same sense that a square wheel works. I have tried to place this same post about ten times yesterday before giving up.

Anyway, Ann is feeling better and her mouth and throat sores are starting to heal. The 24 painkiller drip has been removed (after one really rough night and a bad trip) and she only has her PCA now. Thankfully she only needs that occasionally. She has even been able to try some solid food again, and hold it down.

That’s not to say everything has been smooth sailing this time around. Ann has developed a cough that comes on at night. She says it feels like mucus breaking up, but the physical act of coughing hurts some as well. Her lungs sound clear and she doesn’t have any other signs of an infection. So the working hypothesis is that this is a combination of the lesions in her throat healing and the mucosal tissue in her digestive system rebuilding itself and sluffing off the cells killed by the prepatory chemo.

I think that we will be in the hospital at least until they work out exactly what the cough is and Ann's sores heal up completely.

I forgot to mention yesterday that I've been running fevers, mostly in the evenings and never over 101 degrees fahrenheit. My pulse has also been giving the team issues. It fluctuates between 110-135 beats per minute. My blood pressure is also elevated to the point that I've been placed on medication to regulate it. Now, keeping in mind that I'm constantly being fed a narcotic, I think that's all that I've forgotten to mention. If I remember something else, I'll be sure to confess to it.

Because of my febrile state, blood cultures have been drawn daily at all hours and I've given multiple urine samples. The urine samples have all come back clean, but yesterday's blood draw showed an infection of some sort. The jury is still out on which particular bacteria is causing it, but the doctors should know something by tomorrow. Unfortunately, I started getting that all too familiar feeling that comes with the onset of a urinary tract infection this morning. I let the team know about it and they dutifully ordered another urine sample. Sadly, I couldn't produce enough of a specimen the first time and had to be asked for yet another later in the day.

I think we'll be able to confirm a UTI tomorrow, but if it looks like a duck and quacks like a duck, then it's probably a duck. Considering that I don't have an effective immune system, I probably look like the buffet on a high end cruise to any and all viruses and bacterias. Yum-yum.

The sores in my mouth have grown and the blisters on the roof of my mouth have started to erupt. The PCA really helps to keep everything under control, but I still haven't been able to eat anything. I got courageous this morning and attempted to drink some cranberry/grape juice. The first sip sent me into a spasm that almost made me cry. Knowing that so many other people have survived this gracefully makes me feel like a whiner, so that's the last that I'll say about the stinky mouth sores.

An occupational therapist popped in for a visit today and based on prior experiences, I only expected the visit to last 15 minutes at the most. I was so very wrong. He insisted that we do 10 reps of 13 exercises. Previous OT's put me through my paces to judge my ability and asked me the usual questions to ascertain what level of self care that I was capable of. This guy didn't really do that. I could tell that he was nervous and I'm sure that was part of the problem.

Based on my ability to complete the assigned exercises, he determined that I should see an OT 3 times a week. When I questioned him about why he felt I needed that level of attention, he didn't have a ready answer. I ticked off the list of things that I was able to do on my own on a daily basis, which included everything. I don't use assisted devices. I can bathe myself. I can feed myself. I'm able to communicate my needs with relative ease. The bottom line of my argument was that he'd be wasting my time. In typical "Ann" fashion I told him as much and he retreated. Now I'll get the occasional visit to assure that I'm still doing well.

Physical therapy is going to be stopping in for an assessment Friday morning. I've worked with this physical therapist in the past and have no worries where she's concerned.

Yesterday was Chris's birthday and I'm really sad that he had to celebrate it as a guest of MDA. On the flip side, I'm so grateful that I got to spend another year with my sweet husband. When this is all over I'll have to think of something really special to do for him. I'm wide open for suggestions.

Mouth sores and me

To all of my dear friends who have patiently been trying to get in touch with me, I'm sorry. I'm not avoiding you on purpose or ignoring you all together. I've developed a raging case of mucocitis, which means that the inside lining of my mouth and throat are sloughing away. Not to put too fine a point on it, my gums, tongue, and throat are covered in bloody sores. It hurts to talk. It hurts a lot. I promise to call as soon as I'm able to. Heather, you're at the top of the list.

The mucocitis occurred the same day that Ike hit, so I know it was nerve wracking for those trying to check in on me.

There are days that I can manage to have a bite of something, but more often than not, I can't even manage a sip of water. Dr. Andersson put me on a constant dilaudid drip to control the pain. The only problem is that dilaudid makes me sick. I constantly throw up when it's administered. Because I couldn't hold any of my pills down, my meds were all switched to IV.

When Dr. Andersson realized how badly dilaudid made me feel, he switched me over to something else. A new transplant doctor started rounding on Monday and felt that the new drug wasn't helping, so he switched me back to a constant drip of dilaudid. This is supplemented by a 24 hour drip of zofran to help with the nausea. When the zofran doesn't cut it I can ask for a benadryl/phenergan cocktail, or IV Ativan.

I constantly feel off balance and sedated, which Dr. Andreeff finds preferable to seeing me deal with the constant and excruciating pain. During the day I'm either napping or holding as still as I can. The nausea flares up if I move my head even just a little.

As soon as my counts begin to increase, the sores should resolve within the week. At least, that's what the doctor thinks. I try to eat a little something every day to no avail. It hurts so much to swallow that I end up gagging and/or throwing up. The team has assured me that I will get better and I believe them. I just really want a nice cold glass of water.

That's about all that I have to report.

Refugee

when Ike was closing in on Houston a few days ago MDA cleared out everyone, but the most essential patients and staff. Reluctantly that meant that I needed to leave Ann behind, but we parted in hoping that we would see each other in a day or two. No such luck.

Ike dealt quite a blow to downtown Houston. The power failed and I believe that most of the pumping stations that drain the city failed. As water pressure dropped the sewage system began to back flow. Just about every manhole or street drain that I saw was spewing up a sort of green effluent. This eventually flooded the entire parking of our apartment complex and smelled ghastly. Believe it or not, there where people walking around in flip-flops and crocs through that crap!

The city of Houston issued a boil order for all water then a little while later the radio began advising against bathing. At that point I decided that it wasn’t safe for me to be there anymore. Ann is depending on me to take care of her and if I picked something up then it could easily jump to her and do who knows how much damage. So I grabbed a few thing s and made my way to our SUV.

Getting out of the apartment complex was a challenge as several large trees had collapsed on the front gates and crushed them flat. However another enterprising resident who wanted out of the complex used his F-150 to push open a side gate and allow everyone a path to the street.

The entire city of Houston was (at that point) out of power with the exception of the Texas Medical Center. So I headed for the parking garage which was elevated (away from sewage), dry and quite. Luckily the parking meters still worked and my pass go me in. After driving around for a bit I found a inconspicuous spot and pulled in. I spent the rest of the night there and felt a little like Han Solo (except sweatier) hiding in the asteroid field as the UT police cruised by periodically checking cars. Note to the General Motors Corporation: the Saturn Vue is not a comfortable for more than 3 hours at a time...work on it.

All throughout this I tried to stay in touch with Ann. Sometimes txt messages would get through and sometimes I could get a call into her. At first she told me she was starting to feel the onset of mouth sores and they had given her some painkillers for it. Then an hour or two later the situation started to escalate. Pain pills gave way to a morphine drip. That gave way to a dilaudid drip. Then finally the pain got so intense that she could barely talk and they put her on a pain pump to let her control the medicine directly.

In the middle of this my iPhone crapped out on me, and demanded to be synced to iTunes through my pc. Fat chance considering the city was out of power and there was a snow balls chance in hell of finding an internet connection. I managed to use Onstar to contact Apple tech support who kindly offered to set me an appointment up in the Austin Apple store for a replacement phone. I agreed and called Ann and her nurse one more time to check and see when MDA would open up again. Earliest estimate was Wednesday afternoon sometime.

So with nothing else for me do do I got on I-10 and headed West to Austin. The east bound traffic was packed with people trying to return home, power trucks, National Guard HMMWVs, and Texas State Troopers. The traffic jam heading into Houston didn’t really clear up until I stopped for gas outside of a town called Columbus.

I finally got to Austin, which is a pretty city by contrast to Houston, found the Apple store and got my phone swapped out no questions asked. I immediately called Ann and her nurse answered and said that Ann's condition has worsened. She has lesions in her throat in addition to the ones in her mouth, which are preventing her from talking or eating much of anything. Her counts have reached zero and they had to give her a platelet transfusion (thankfully MDA's blood bank is still functioning). She reassured me that this is common and that the sores will begin to heal as the new marrow begins to produce white cells to infiltrate the lesion and platelets to seal them up. I'm worried that they my take Ann off of solid food and put her on TPN if this doesn’t happen soon.

I have bee fortunate enough to find a room for the next two nights here and although the power, tv and showers are more than welcome I feel nothing but guilt because of the agony Ann is suffering through.

Given the traffic I have decided to stay here in Austin at least until tomorrow morning. I theorize that if I hit the roads early enough and try to get back in from the north through Conroe and I-45 (rather than I-10 which was the evacuation route) I may be able get back to Ann's side Wednesday night.

Shutting Down for Ike

I've just been told that I will probably have to leave the hospital and Ann because of Hurricane Ike.  I'm not crazy about doing it, but if I have to I will.

Ann finished her last dose of Cytoxan yesterday and is now dealing with the after effects.  Stomach cramps and nausea are the principal problems.  Apart from that she appears to be doing well.  Though her WBC count is still refusing to drop to zero, the Dr. Anderson assures me that this will happen shortly.  He has been theorizing that the small increase in WBC and RBC numbers is from the 1500 cc's of bone marrow that Ann got in the transplant.  Sounds reasonable to me.

In other news I have finially otten to see a shrink and they put me on two meds to help with my depression and overwhelming anxiety.  Citalopram and Clonazepam.  They have effectively reduced my stress and painc attacks to zero.  I feel like a wet blanket has been wrapped around by head and my thoughts don't feel as sharp as they once did but I'm closer to 85% functional as apposed to 65%.  I guess that’s progress.

I've just been told that the flood gates around the texas medical center are going to be raised soon.  Before that is done everyone who is not medical staff or patients has to be out.  Unfortunately that includes yours truly.

This round of cytoxin is a monster. The last time I received it was with my first transplant and it didn't have such an immediate effect of me. This time, I could feel it almost immediately. I spent the better part of today huddled in my bed struck down with stomach pain. It made eating a chore and forget about wanting to drink anything. Unfortunately, cytoxin is extraordinarily toxic to your bladder, so you have to drink copious amounts of water to eliminate it from your system. You have to suffer to be well.

I sucked it up, literally, and dealt with the discomfort.

I finally confessed to my nurse that I had a stomach ache and she suggested a few things including Maalox and something for gas. I was so miserable, I took her up on everything. Nothing worked on its own, but the discomfort eventually subsided and I was able to eat a small portion of dinner. I blame the cytoxin.

My numbers have yet to bottom out, but my doctor assures me that I shouldn't worry. It should happen any day now. I'm anxious for it to happen because the sooner I reach zero, the sooner I can work on engrafting. Not that hospital living doesn't have it's appeal, but there's something to be said for sleeping through the night without visitors coming and going at all hours.

I'm still feeling a little deflated from all of the chemicals, so that's all for now.

The first bag of cytoxin was hung around 9am this morning. An hour later I got a dose of lasix to help flush my system of the chemo. I'll get another dose of lasix around 4pm.

There's not much else to report. I'm still feeling well, all things considered. The mysterious bone pain has abated. My appetite continues to decline, which I expected to happen. Food just tastes strange and I tend to fill up rather quickly. I know that I'll start to feel unwell in the next few days thanks to the cytoxin and I'm not looking forward to it. On the plus side, I might finally catch up on some much needed sleep.

To say that this transplant experience is vastly different from my first would be quite an understatement. If I'm remembering correctly, I sailed through the cord blood transplant with only a handful of bad days when I felt a little wilted around the edges. Of course there was nausea and neuropathy, but that's par for the course.

This go round things are really different. The conditioning chemo hasn't knocked me on my bottom, yet and I haven't started projectile vomiting. My energy levels seem relatively normal for me. I've been warned that this will change in a handful of days.

Last night, just before going to bed I had a scary moment. My bones started to ache like someone was exerting a lot of pressure from the inside. Of course my mind jumped to the worst. Bone pain can mean a number of things. It could be due to injections meant to stimulate your cells to multiply. It could also be a symptom of relapse. The logical part of my brain should have realized that I'd just come off of a pretty serious chemo regimen and that the likelihood that the leukemia had returned was slim. I must not have been listening.

I complained to Chris and he paged the night nurse to ask for some pain killers. When she arrived we asked her what might be going on. She admitted that she'd seen it before in as a transplant nurse, but wasn't sure of the mechanics behind the cause. She later came back after talking to the charge nurse about it to reassure us that we shouldn't worry. I tried to relax and was finally able to when the darvon kicked in and put a stop to the deep ache in my legs. My arms continued to throb, but I didn't let that stop me from going to sleep.

Today we talked to Dr. Andersson about the phenomena and he asked if it had happened with the first transplant. When I told him that nothing like it had happened his second theory was that I had been infused with such a large quantity of fluid that the pain was my body's way of adjusting to the change. Considering the size of the marrow bag and the amount of saline I get on a daily basis I can believe this.

I haven't had anymore problems today. In fact, I slept for most of it thanks to a large dose of benadryl ahead of an IVIG infusion. I'm still a little puffy and my pajamas are a little snug thanks to the extra fluid I'm carrying. C'est la vie.

On a much happier note, I want to wish my friend Patricia a very happy first birthday. Here's to hoping she has many, many more.

Ann 3.0

Live Blogging (Day -0)

7:30 AM: Cells are late from the airport. No word on what's going on.

8:00 AM: Still no sign of the cells and no word on what is happening.

8:30 AM: Ann is awake and manages to eat some breakfast. Nurse checks on the marrow for me. Still no word.

9:10 AM: Nurse came in to tell us that the cells have just arrived at MDA from the airport. She is going to check on when the cell lab will be done with them. She said the marrow bag is unusually large.

9:30 AM: Ann takes a shower. She's worried the pre-meds will have her knocked out for the rest of the day. Nurse let me know that the transplant is estimated to happen at 10:00 or 11:00 AM now.

10:00 AM: Nothing yet. Lots of activity out around the nursing station.

10:35 AM: Pre-meds just started. Nurse says that the target is now 11:00 AM. I'm trying very, very hard not think about the shelf-life of the cells or how long they have been in transit.

10:45 AM: Benadryl is starting to make Ann loopy.

11:00 AM: Activity outside has died down. Looks like its not happening at 11 either.

11:04 AM: IV team is here to check on Ann's catheter. The one they put in last week for the transplant has been showing very light slow bleeding.

11:10 AM: As usual the IV team doesn’t want to do anything (they never do) and suggested that we change the dressing more often than once a week. As if we weren't doing that already.

11:15 AM: Peeked out in the hall. Dr. Andersson and the transplant team are all assembled at the the nursing station near our room going over papers.

11:30 AM: Marrow is here!

11:45 AM: Bag is hung and dripping. Pictures later

Delay (Day -2)

We found out one more thing about Ann's donor today. She is international and comes from a country across the international date line. We know this not because we were snooping around, but because we found out today that there is going to be a slight delay in the transplant.

It was scheduled to take place Friday afternoon sometime, but now has been moved to Saturday morning to allow for transport. One of the staff here explained that it sometimes takes a little bit longer for cells coming from overseas. So putting two and two together and using a bit of math, it narrows down the country the flight is coming from.

Because all of them have flight times over 18 hours to the US the ETA of the marrow would be somewhere around 1:00 AM Friday. Assuming that the cells are on the plane by roughly midnight our time. Because the doctors and nurses are at home and sleeping it makes sense that the transplant will wait until the first thing the next morning.

Dr. Kebriaei stopped in for a visit yesterday and resolved our confusion over the missing ATG. It was basically what Chris wrote in his last post. Essentially, they just want to be sure that I engraft and don't have a failure.

This conditioning regimen is vastly different from the last time I did a transplant. I've just been getting fludarabine and busulfan since Saturday. My appetite has just started declining to the point that I'm eating quarter portions at best. If I can remember to get something for nausea, I can manage to eat a little more. The only problem with this is that I end up passing out from the anti-emetics. The last time around, I was throwing up almost immediately and felt fairly wilted from the get go. This time, things are moving in that direction slowly.

I asked Dr. Andersson about this and he explained that this chemo regimen is designed to destroy a cell's ability to reproduce. Essentially, they can't make any more and just die off. His experience is that I will feel the cumulative effects of the chemo 5 or 6 days after the transplant. I can buy that based on how I've been feeling. I'm imagining being slammed all at once with that yucky "chemo" feeling and I'm not looking forward to it.

While I'm still feeling relatively alright, we do laps around the pods to keep my lungs in shape and when I can remember to, I do my incentive spirometer exercises. Aside from these little excursions there's not much else going on. I've watched more television in the last 4 days, than I can remember. I've been doing a little mindless knitting and promise to post pictures of finished projects as soon as we get out of here. Sadly, the books that I brought to pass the time are sitting in a bag collecting that strange white dust that is unique to hospital rooms.

Resolution (Day -3)

Good news, we got a resolution on the question about the Rabbit-ATG.

Dr. Andersson came in just a few minutes ago and let us know that the ATG should not have been included in the treatment plan from the beginning. Why it was on the paper work that we signed is a question that has not been settled yet. However, it looks like Dr. Kebriaei caught the error sometime between us signing the papers and entering the hospital.

It’s a good thing too because if the ATG had been hung it would have basically wrecked the concept behind this transplant. This transplant is all about creating more GVH and GVL than would normally develop. ATG has two modes of action, the first is myleo-ablative (killing off marrow cells) and the second is to wipe out mature T-cells which control immune responses.

So ATG given in a normal transplant setting reduces the ability for the original immune system to "fight" back against the donor cells after they are infused. But ATG has a half-life that’s longer than a couple of days so after it is infused it acts on not only the original immune system, but the incoming bone marrow too. Which is bad if you want the marrow to come in fighting like they do in Ann's case.

Dr. Andersson was very reassuring and did an exceptional job of explaining what is going on. In addition Dr. Kebriaei is going to stop by later today and make sure every things copacetic. We're feeling better about everything already.

WTF (Day -4)

I never thought I would be sitting down to write this, but I am jaw-droppingly shocked at what we found out today.

This morning our rounding doctor, Dr. Andersson, came to see us and we had a short list of questions prepared for him. Most of them centered around Ann's daily blood test. Why was one number a little high? What did he think was causing it? The kind of thing that doctors probably sleep walk through, most of the time. Not because they don't take the questions seriously but, because they are probably pretty easy to answer. However, he really was a very nice man and seemed genuinely interested in answering our questions.

Almost as he was leaving he made an innocent comment that completely altered the entire trajectory of the day. I'll paraphrase how it happened.

"So you are going to be finished with chemo tomorrow", he said to Ann.

"What do you mean?" I piped in. "We have three days of ATG coming up."

"No. Your orders are for only for busulfan and fludarabine. There is no call for ATG in your orders."

Ann and I disagreed with him and that lead him to call the charge nurse and ask her to pull Ann's chart and orders. We both looked over the documents and found the orders and schedule that Ann had signed in clinic with Dr. Kebriaei Thursday when she consented to the treatment plan. Those called for three days of busulfan and fludarabine and three days of Rabbit-ATG then the transplant. Ann's signature was there as was the doctor's, just like the copy we had been given and I had filed at the apartment.

The only difference was that on this copy the Rabbit-ATG had been crossed out and the word "error" had been added. I asked Dr. Andersson why the ATG had been omitted and he was at a loss. I could tell from the color of his face and the way he casted about trying to answer me he was embarrassed.

Presumably Dr. Kebriaei had made this change for a good reason, and I want to give her the benefit of the doubt. But omitting us in the decision making process is bordering on the inexcusable. Because this is probably Ann's final shot at beating this we argued very vociferously for the strongest chemo regime that Ann could tolerate. A reduction in the amount of chemo would see to make it less likely, not more, that this transplant will be a success.

I have to ask myself what the point of us signing our consent was?

Update:

I should add that Dr. Andersson promised he would find out what ws going on and have answers for us in the morning.