Update

D +135

Update:

Ann got her endoscope today and the preliminary results look normal. Biopsies were taken from different points along her GI tract and those are being sent to the lab for analysis. However, there were no visual signs of GVHD or anything else out of the ordinary.



We got to meet with Dr. Kebrieai today and discussed this whole situation with her. Like us she suspected GVHD but, I get the feeling that she has changed her mind. When we got back to the room she had a lab tech waiting for us so she could draw blood for the micro biology lab.

Not sure what the draw was for but Dr. Kebrieai did mention earlier checking for Clostridium difficle as a possible source of Ann's tummy trouble. However, you don't need a blood sample to check for it. C. diff is basically a normally harmless bacterium that is found in the GI tract where it helps in digestion. However, given the right chance it can grow out of control and start producing toxins in the intestines which lead to cramping and diarrhea. According to what research I have done, it is the one of the most common infection picked up while in the hospital.

Lastly I don't want anyone to get the impression we are in peril here or Ann is on the verge of going into the ICU. She is miserable, irritated, and frustrated but no-one has given us any impression that we are even approaching a anything near or like a real crisis.

GVHD?

Day +135

WBC 4.1 K/uL
RBC 2.59 M/uL
HGB 8.3 G/DL
PLT 323 K/uL
ANC 2.47 K/uL

Third day in the hospital and not much has changed. Ann is still running low grade fevers and they tend to happen in the morning and at night. Low grade is defined as below 37.8 C or 100.4 F. She is still having problems eating and can't hold much of anything down. She wants to eat but 1 or two bites of anything results in either uncomfortable swelling of her abdomen, a rush to the bath room with diarrhea or both.

Ann has been on a 24 hour IV drip of Zosyn and Cipro since we got here and they have been growing cultures taken from her nose, blood, etc, to see if there are any bacterial or viral bugs involved in this. As of yesterday all the bacterial cultures were negative. Meaning nothing of substantial note grew in the petery dishes. That rules out bacterial agents.

Viral is a different matter. In transplant patients there are a small list of viruses that commonly cause this type of trouble. Most of them are members of the Herpesviridea taxon. However viruses take much longer to culture so the jury is out on there possible involvement until next week.

Apart from growing cultures the only other way to find out what is going on inside Ann is to "look". Thats done with a endoscope and we where supposed to get to see the gastroenterologist yesterday to get that done. However, MDA is a big place with lots of patients so they got over full and we got bumped until later today. My hope is that they will be able to tell what is going on from visual inspection and will not have to biopsy anything. If they do then we will have to wait until sometime next week until the labs here finish analyzing it.

More later.

Day +133

Our friend Liz passed away on Monday. We never actually got the chance to meet her, even though she only lived 30 minutes away. Sometime back in March, our friend Joe posted a link on the Advocate that directed people back to this blog and that's how we met her. Liz was a BMT survivor and was released from Tulane hospital the day before Katrina hit. She reached out to me after reading the blog and we got to know each other through emails. Her emails were always thoughtful and informative and most importantly hilarious. I always looked forward to getting at least one a week from her and recently, we had begun to make plans to meet. Just after I arrived in Baton Rouge, she went back into the hospital with pneumonia. Her husband, Richard, kept us up to date on what was going on with her from that point. You all know the rest. I will always regret not having met Liz personally, but I'll be forever grateful that she took the time to reach out to me. Please pray for her family during this time.

As for what is going on with me...I've been vomiting since last Thursday and have been having a hard time keeping anything down(or in for that matter). You all know about the sore throat and stomach issues. Monday night I began running another low grade fever. Since it started so late in the evening, I think Chris decided to wait until morning to worry about it. It went from 100.2 to 101.3 the next morning. That's all it took. Chris had me packing a bag for Houston. We were on the road at 8 AM and due to some technical difficulties, were in Houston by 1:30. I was admitted to the MD Anderson Emergency Care Center--this is rather like the ER at a regular hospital. Even though MD Anderson specializes in treating cancer, it is always filled to capacity. They are currently adding floors to the hospital, but in the mean time, the worse case scenarios are the first ones to be admitted. Chris and I waited there until 2AM the next day for a room to be made ready for me. I'm currently writing to you all from the 10th floor with a lovely view of the Baylor College of Medicine. Aside from the glorious HVAC units on the building next to me, that's all there is to see.

I've continued to run a low grade fever all day and have been suffering with severe diarrhea. My appetite is non-existent since my stomach immediately begins to cramp as soon as I eat something. I'm starting to suspect GVHD of the GI tract. The attending physician wants to wait for a course of antibiotics to run 24 hours before jumping to that conclusion.

What's that, but you have no central line, Ann? No, they removed my CVC when I was discharged from the transplant over 30 days ago. I still have the divot and scars in my chest to prove it. Chris is thinking a little plastic surgery may be in order. Throw in a brow and chin lift and I might get on board. Much to the chagrin of all of the nurses, an IV line has to be started the old fashioned way--with a long needle. They may hate having to find a viable vein, but I hate it more. The sensation of the needle spelunking under your skin with your frightened veins rolling for their lives, desperately trying to avoid a stick. Did I mention that these lines don't last very long? I've only been here for 2 days and I've already had three lines. Ouch, Elliot.

For once my magnesium is too high. Can you believe it? They've decreased my dosage in the hopes that my stomach cramps will subside. No luck yet, I'm afraid. My other numbers are as follows:
WBC 4.4
RBC 2.77
HGL 8.9
ANC 2.81
PLT 342

That's as good as it gets. I'm not relapsing according to the numbers. As far as I can tell, I was extraordinarily lucky with all of the events that occurred immediately after the transplant. Maybe life is just catching up to me. They won't know if this is GVHD until they've done the scopes. Endoscopy and colonoscopy. Trust me, there will be ativan involved. If this is just a combination of a viral and bacterial infection, that's life. My baby stem cells need to learn to stand up to the bullies. I'd feel better if they were girls, since I'd know that they'd get the job done under budget and on time. :) Chris assures me that the boys will do just as well. Since they're a part of me, I fully believe it.

So, I continue my life as a lady of leisure, only in the exotic confines of an MD Anderson hospital room. This means that I will miss our friend's wedding in Baltimore. I'm very sorry, Wiley and Mara. Please send pictures. I was really looking forward to toasting you all and having a post transplant dance with my honey. This also means that the side trips to New York and New Jersey are off. Sorry, guys. We'll figure something out after this is all done. It'll give me time to finish knitting a few things for the trip. I have a CT scan in a few minutes, so I'm off. Feel free to entertain me with lots of comments.

Day +128

My throat and ear appear to be on the mend. Thank you, Valtrex. Every time this prescription gets filled, I get a little pamphlet on herpes. This makes me wonder what the pharm techs must be thinking, since I have to get it filled once a month. I know, I have bigger things to worry about.

I'm completely congested on the left side of my face and it's making me miserable. Nothing that I've done helps and no amount of nose blowing produces anything. I can feel it occasionally drain into my stomach, which is a supremely delicious feeling. This generally happens fifteen minutes before I vomit. As if things aren't complicated enough. I didn't manage to hold anything down yesterday, which made me feel dehydrated and miserable today. I made a point of drinking tons of liquids which only made me feel worse.

I've managed not to vomit today, but the record is starting to look a little shaky. Dinner consisted of pancakes and water--my choice. I thought the pancakes would be easy to digest. Halfway through the meal I started to feel queasy and had to stop eating. Chris told me I just looked pitiful. That pretty much sums up how I felt. I have one more round of pills to take tonight, and I'm worried that I won't be able to keep them down.

Chris' kitty has been keeping me company all day. If I stay still long enough, she'll climb onto my lap and pin me down for an hour or two. I stopped fighting her and just started taking naps whenever she did. It's worked out rather well. We haven't been able to get a decent picture of her to post, so you wouldn't know that she is enormous. Hence, her nickname: My Baloney. It's an homage to a character on 30 Rock and it's very apropos. Her real name is Etsuko, but we're convinced that she doesn't realize it.

Chris and Dixie are pulling long faces around me. I know that they're just worried about me. I wish that I could reassure them more effectively. I just feel like pooh right now. Not "cancer" pooh, but allergies/flu/cold pooh. I have a follow up with my ENT next week and he should have the results from the throat swab.

I'm off to take the last of my medications for the evening and then it's off to bed for me. The life of a recovering CBT patient is nothing if not exciting.

Platelets as Refrigerator Art

Day +127

WBC 9.6 K/uL (4.5 - 10.8)
RBC 3.88 M/uL (4.2 - 5.4)
HGB 12.2 g/dL (12.0 - 16.0)
PLT 569 K/uL (150 - 350) - more about this below
ANC 7.2 K/uL (1.5 - 10.0)

OK so today had our "normal" Thursday appointment at the hematologist's office at Mary Bird Perkins. I wasn't expecting this to be a big deal, but it turns out that the LPN from our last visit gave us the wrong day for our appointment. We were actually supposed to be showing up tomorrow, and our presence caused a bit of heart burn. We were told by reception that we would have to wait a long time to see the doctor since because we didn't have an appointment for that day we were being treated like walk-ins. I started to complain about the us being given the wrong day for our appointment, but somehow the receptionist only understood us being angry about having to wait to be seen.

Totally missed the point, but they hauled out the office manager anyway to reassure us of something we were no concerned about to begin with. When I tried to explain what was bugging us again...the wrong appointment and conflicting information from the LPN, I underlined my concerns by stating our confidence in MBP was falling. She looked at me like I just spontaneously grown a second head and "apologized" that a scheduling error was causing us to loose our faith in MBP. If the overall effect sounds like it was thinly veiled sarcasm then your on the same wavelength as me and Ann.

So we waited and eventually did get in to see the hematologist. Who by the way couldn't have been sweeter if he had taken a bath in sugar before he came in. He started off by covering all of Ann's concerns, checking to see if the node had come back, checking her ear and throat. He asked about the ulcer the ENT had found and if a swab was taken. After which he verified it's presence himself. Then he got all of the ENT's information so that he could contact him and share test results. Basically this was a 180 degree turn around from what we experienced Tuesday and this morning from the administrative part of his office.

He also said that Ann's blood work looked great. The jump in WBCs from last weeks 7.8 K/uL to today's 9.6 K/uL is most likely due to the baby stem cells reacting to the virus or whatever is going on in Ann's throat. Her platelets are also unusually high, well above the normal range for healthy adults. However, the doctor did note that a common first reaction to sickness by the human body is to start pumping out platelets en-mass before increasing white blood cell production. So the current platelet value of 569 K/uL isn't anything to worry about. I joke with Ann that the baby stem cells have mastered platelet making and are just cranking them all the while screaming "Look what I did Mom!", in the hope that one or two of them get hung on the fridge. By the way Ann reports that her ear no longer hurts and her throat is feeling much better. However, she has vomited once today due to excessive mucus drainage...yum.

We are getting ready for our trip back to Houston next week for Ann's first follow up with MDA and after that a trip to Maryland and New Jersey/New York. Providing MDA doesn't tell us not to. They gave us the go ahead at the beginning of September, but these little episodes Ann has been having may change their mind. I really hope not though. There are lots of people to see on the trip that we have to say a very heartfelt thank you to.

A little something extra

I had to add my two cents to Chris' post. The person that I saw at Dr. Bienvenu's office is an LPN, not a PA. My ear does freaking hurt. I know why kids weep when they don't feel well. They don't have the words to articulate what is really happening. They can say, "hurt" and howl in frustration when the grown ups don't understand. I can articulate the pain, but it hurts too much to do so. There is a reason we don't remember childhood illnesses. We're better off not remembering. I know I'm lucky to be able to complain about this. I almost died because of an internal malfunction. I suspect that I'll be reliving all of my childhood episodes and I'm not exactly excited about it.

I've complained about my throat for the last three weeks. I brought it to the attention of my local doctor repeatedly. Yes, a sore throat generally doesn't mean anything in a normal person. I take meds that suppress my immune system. I can't fight off the things a "normal" person can. The team at MDA jumps all over me at the slightest sniffle. If I sneeze during an appointment, I get a nasal wash. Do I have to fall on the floor and have a flailing tantrum to get my local doctor to take me seriously? I am by no means a hypochondriac. I thought I was being a wuss last December when I couldn't handle my regular life. Ha, little did I know I had leukemia.

Yes, I did have a breakdown yesterday. I couldn't stop crying because I was so angry and frustrated. It was absolutely demoralizing to go into the local office only to be told that I could be referred to an infectious disease specialist. Are you kidding? You could have saved me a trip and just told me that on Monday. Instead, I was told to come in on Tuesday to have blood drawn. It was a complete waste of my time and money. Don't patronize me and don't take me lightly. By the way, try listening to the patient. I detailed my problem on Monday. My throat still hurt and I had a serious ear ache. The LPN was actually surprised when I asked what I should do about the ear ache. Yes, genius, I do know that the ear and the throat are connected. That little bit of knowledge is what made me wonder about the infectious disease specialist.

I should have been referred to an ENT. I wanted to see an ENT. Unfortunately, I don't get to just call whomever I'd like. I have to let my primary doctors know what's going on and then follow their advice. This is all based on a desperate want to live. I don't want to force the marrow out of my bones because I did something stupid. My doctor at MDA is johnny on the spot with treatment. Unfortunately, she's 5 hours away. She's always prompt with calling me back and she's always thorough in her questions. So now, Chris and I have some choices to make about my local treatment. Do I assemble a team of local doctors to treat my various ailments? How can I guarantee that they'll communicate with one another? I've already had several examples of how lack of attention to detail can make things worse. I happened to have read the packet that my transplant doctor sent over to my local oncologist. I suspect that members of his team have not. Trust me, I know.

Please forgive my rant. I'm tired of feeling awful when I know all of this could have been cleared up three weeks ago. I sincerely hope that I don't blow up at my weekly appointment tomorrow. It would be a little embarrassing to be escorted out of Mary Bird Perkins by security. There's always a first time.

Ouch! My %&#@ing throat hurts!

Day +126

Hi all, we have a bit of drama to report. If you remember about two weeks ago Ann started running a temperature, then got a little sore throat, and a raised lymph node (scared my silly). Most of these resolved after a week of Biaxin and the twice weekly Bactrim she is already taking.

I say most because the sore throat didn't really resolve. The "sore" spot moved from the right side of her neck to the left, where the node came up. Once it got to that side of her throat the pain it was causing slowly started to diminish. Then two days ago Ann started to have a "slight" ear ache from inside her left ear.

The ear ache and the sore throat gradually began to increase in intensity until yesterday she was telling me that she was uncomfortable speaking. The title of today's post is pretty much a direct quote from her.

So we called MDA and asked what to do and when they got back to us they said to go in to our local hematologist office and then call them back. So we called Mary Bird Perkins in Baton Rouge and got an early appointment with our hematologist's PA. That should have been my first signal that we where in for some serious frustration.

So we get in to see the PA after a full blood draw, and she just starts going over Ann's CBC results (the CBC results looked very good, I just forgot to ask for a copy). At which point we have to jump in and "remind" her that the reason we where there was because of the throat and ear. She acted surprised and then looked inside Ann's mouth and noted that her throat was indeed "red". Then she made the dismissive and condescending observation that "Oh...the throat and ear are connected. You should really see and ENT". Brilliant!

So do they have one they can refer us to? No. Do you want us to follow up before our next scheduled appointment? No. At this point both Ann and I are getting that uncomfortable sinking feeling. In particular I am starting to be struck by the impression that MBP in Baton Rouge is a mill that is geared to only service geriatric cancer patients. I know that is not possible to direct.y compare institutions like MDA to ones like MPB as one is seriously better funded.

However, when we are taking about a condition as serious as recovering from a BMT you would expect some continuity of care from even smaller organizations. That means even if you don't have ever medical specialty on staff like MDA does then at a minimum you should at least provide a list of co-operating specialists who you regularly work with. Older patients have loads of doctors that they where probably seeing well before they got sick. This just isn't true of 32 year olds. Ann got so frustrated by this that she started crying.

Anyway after lots of waiting we did get to see and ENT. Who it turns out was the same one that sent Ann's blood out in December on a hunch something was wrong. So he was a bit surprised to see her again. To his credit he quietly listened and Ann and I detailed out her medical history for the last couple of months and the current prescriptions she was on. But you could tell he was a bit freaked out by the entire thing. I'm sure not many CBT patients walk through his door.

He did a basic exam and discovered a 0.5 to 1 cm ulcer on the back left side of her throat. He believed it was viral but, confessed he was ignorant of GVHD. So to be on the safe side he took a swab and prescribed 500mg of Valtrex (she is already taking 500mg, so now she's on 1000mg total) and a Lydicane mouth wash to help in case the pain got too bad to Ann to swallow. Thank goodness it hasn't. What kills me is that the ENT found the ulcer in less than 10 seconds with a light and a tongue depressor, where as the PA at MBP has looked at Ann's throat twice and missed it.

Since the ENT is not plugged in with the Hematologist at MBP or MDA we are going to have to manually update everyone with the results of the swab. Frankly I am starting to get envious of people who live near the major institutes. Anybody near MDA, Sloan, Dana Faber, or City of Hope need an mechanical engineer/construction manager or looking to sell a house?

Ann has been avoiding talking and says that the pain is better than yesterday. Hopefully it is clearing up. However if it doesn't by Friday or Saturday we have standing orders to return to MDA and check in at the ER until we can get readmitted into the hospital.