Day +141
We got the official word on what's going on a few minutes ago. I have PTLD, which is a pre-cursor of lymphoma. The doctors keep emphasizing that this is not cancer and is only a complication. My leukemia has not reactivated, but I will be getting a bone marrow biopsy tomorrow to see what's going on with my graft. They just want to be sure that the PTLD hasn't infiltrated my graft.
The results from my CT scan showed that my abdomen is littered with lymphnodes growing tumors. This is par for the course with PTLD. This is also the reason that I've had extreme nausea and diarrhea. I'm not absorbing nutrients like I should. My attending physician has decided to cancel the surgery scheduled for me for tomorrow. The head and neck guys were going to go in and get a big chunk of the tumor growing in my sinus cavity. Here I thought it was just a giant plug of snot. Silly me.
I received my first dose of Rituxan yesterday. It's side effects are similar to that of rabbit ATG. I got severe chills and they had to put something in my mouth so I wouldn't bite my tongue off. It was pretty bad. I had a fever all night in addition to the chills. The nurses have reassured me that the next dose will be easier to tolerate. I'll get one dose a week for a total of four weeks. This is preliminary based on how well the tumors react to the drug.
The test for EBV came back positive, which is how all of this started. The Epstein Barr virus infiltrated my defenses and just started wrecking the place. This is the same virus that can be responsible for mono in healthy people. I don't know where I picked it up from, but I do know that the cat's are off the hook. My doctor ran a test for cat scratch fever. I know she had to, but I still would have felt horrible if one of the kids gave this to me. The test for that came back negative.
The attending physician did remark that the node on the side of my neck and jaw seemed to have shrunk and I can confirm this. I'm experience significant sinus drainage and the speculation is that the tumor in my sinus cavity is starting to shrink and that's what's draining. It's so yummy to be me.
I will admit to being a little irritated at having "beaten" one cancer only to fall face first into the world's biggest pile of dog pooh. Don't get me wrong, I'm not having a pity party, or a "why me?" moment. I was just hoping for a little bit of a break and a chance to get my life back on track. It looks like I'll be in the hospital for a total of five weeks this time around. Feel free to email and post lots of comments. I only packed one book and it is horrible. I seriously thought that I would be getting out of here within a week. Silly me.
On the knitting front, things couldn't be worse. You really shouldn't knit something intricate when you know that you'll have interruptions every few minutes. The lace stole I'm knitting looks more like those sad little pot holders we all made during arts and crafts for mother's day. I'm still following through with it and by gosh, I'm going to wear it. Probably inside, with the curtains drawn and the lights turned down really low. But I'll still wear it. I've decided that when I get out, I'm finally going to try to knit a sweater. God help me. I'll have to seriously concentrate on that one. Knowing me, I'll choose the most intricate design that I can find, cavalierly ignoring the "expert" rating on the pattern in favor of my high intellect and over abundance of confidence. How do people put up with me?
It's almost noon and I'm still in my jammies. I'm waiting for a nurse to come in and wrap my arm up so I can take a shower. No telling when this will happen. The poor nurses are so over worked, I hate to bother them for something so trivial. I did get the PICC line in my arm and it did suck. The bright side is that they can get blood draws from it, so no more needle sticks. Or, rather, I should say fewer needle sticks.
Chris is being amazing throughout all of this. I know he's scared spitless and I wish that I could make things better. He's busy putting together things to keep me entertained and out of trouble. That's all I have for now. If I hear of anything else, I'll pass it along.
Thursday, October 18, 2007
Wednesday, October 17, 2007
Day +140
Chris has insisted that it is my turn to blog today. I'm not exactly in the best mood, so please forgive me a head of time. My transplant doctor stopped in while I was out having a CT scan, so she got a lot of one on one time with Chris. It would seem that the protein levels in my blood have dropped which means that my body is going to start cannibalizing my muscles for protein soon. She suggested that he get me to drink a boost. I will drink the boost. When I am ready. Getting the little can pushed under my nose every few hours is making me dig my heels in and resist like a 4 year old. I have been complaining about possible being malnourished for a month and I'm just now getting lambasted. Please give me a break.
I had several large helpings of citrus flavored barium before the CT scan which has caused multiple tummy problems. My nurse gave me some Ativan before hand so I wouldn't throw up. Throwing up wasn't the problem. It was the other end. Go barium.
I'm getting a new line inserted to receive IV medicines. The stick line that I currently have isn't cutting it. The option of another CVC was presented, but discarded in favor of a PIC line. It's a line that runs up my arm. I hope it doesn't get in the way of the knitting, because I don't really have anything to do up here.
Poor Chris is getting manic with the not knowing. None of the test results are in and he lives for the numbers. I have a small surgery scheduled for Friday. The head and neck guys are going to be going in and taking out a larger piece of the necrotic "tumor", for testing. Can't wait. Maybe I'll get ice cream and pudding for most of my meals.
I don't have anything more to add. Chris may blog later if he learns anything else. He's been quite a trooper throughout this entire ordeal and I'm hoping it's all over before too long.
Chris has insisted that it is my turn to blog today. I'm not exactly in the best mood, so please forgive me a head of time. My transplant doctor stopped in while I was out having a CT scan, so she got a lot of one on one time with Chris. It would seem that the protein levels in my blood have dropped which means that my body is going to start cannibalizing my muscles for protein soon. She suggested that he get me to drink a boost. I will drink the boost. When I am ready. Getting the little can pushed under my nose every few hours is making me dig my heels in and resist like a 4 year old. I have been complaining about possible being malnourished for a month and I'm just now getting lambasted. Please give me a break.
I had several large helpings of citrus flavored barium before the CT scan which has caused multiple tummy problems. My nurse gave me some Ativan before hand so I wouldn't throw up. Throwing up wasn't the problem. It was the other end. Go barium.
I'm getting a new line inserted to receive IV medicines. The stick line that I currently have isn't cutting it. The option of another CVC was presented, but discarded in favor of a PIC line. It's a line that runs up my arm. I hope it doesn't get in the way of the knitting, because I don't really have anything to do up here.
Poor Chris is getting manic with the not knowing. None of the test results are in and he lives for the numbers. I have a small surgery scheduled for Friday. The head and neck guys are going to be going in and taking out a larger piece of the necrotic "tumor", for testing. Can't wait. Maybe I'll get ice cream and pudding for most of my meals.
I don't have anything more to add. Chris may blog later if he learns anything else. He's been quite a trooper throughout this entire ordeal and I'm hoping it's all over before too long.
Tuesday, October 16, 2007
The Mouse that Roared
D +139
Rituxan is a monoclonal antibody derived from the spleen cells of mice exposed to B-cell cancer, and it comes from the same family of drugs as Rabbit ATG. Just like the rabbit drug, the mouse really packs a wallop!
Rituxan infusion finished up and Ann held up pretty good. She spiked a fever of almost 102 F and had chills so bad they had to give her 4 sets of warm blankets. Her teeth chattered so much that it was necessary to get her to bite down on a tounge depressor to avoid her biting her tongue through or chipped/cracked teeth.
Ann is sleeping Demerol flavored dreams next to my little fold-out cot right now and the nurses pop in ever hour to check her vitals. They assure me Ann is doing "well" (Superman does "good"), and there shouldn't be any complications.
Just found out that the abdominal CT Scan has been rescheduled to 1st thing in the morning. Hopefully the radiologist will have his report ready before the attending physician and transplant team make their rounds.
I think I'm gonna stay up tonight and watch Ann sleep.
Rituxan is a monoclonal antibody derived from the spleen cells of mice exposed to B-cell cancer, and it comes from the same family of drugs as Rabbit ATG. Just like the rabbit drug, the mouse really packs a wallop!
Rituxan infusion finished up and Ann held up pretty good. She spiked a fever of almost 102 F and had chills so bad they had to give her 4 sets of warm blankets. Her teeth chattered so much that it was necessary to get her to bite down on a tounge depressor to avoid her biting her tongue through or chipped/cracked teeth.
Ann is sleeping Demerol flavored dreams next to my little fold-out cot right now and the nurses pop in ever hour to check her vitals. They assure me Ann is doing "well" (Superman does "good"), and there shouldn't be any complications.
Just found out that the abdominal CT Scan has been rescheduled to 1st thing in the morning. Hopefully the radiologist will have his report ready before the attending physician and transplant team make their rounds.
I think I'm gonna stay up tonight and watch Ann sleep.
Chris' $0.02
D +139
Today's blood work...
WBC 4.6 K/uL
RBC 2.74 M/uL
HGB 8.8 G/DL
PLT 437 K/uL
ANC 2.88 K/uL
No blasts or otherwise weird cells show up in the blood work. Now that that is out of the way let me give everyone the the details of what is happening right now.
MDA is 95% sure that Ann has something called Post-transplantation Lymphoproliferative Disorder or PTLD for short. It is a pre-cancerous condition that develops often because of infection by the Epstein Barr Virus. PTLD presents as a spectrum of problems ranging from Lymphadenopathy (swollen lymph nodes often painless and hard), diarrhea, and cramps. It is primarily detected by swollen masses in the head and neck of unexplained origin. It can cause lymphoid "tumors" in virtually every organ and if it is allowed to persist long enough it can progress into non-Hodgkin's Lymphoma.
So here is what Ann is dealing with right now. She has several swollen lymph nodes on the left hand side of her face. The most predominant is her superior deep jugular lymph node on her left side, which is swollen to about 2 cm and is hard and painless (this is what got biopsied yesterday. In addition there is a mass approximately 4 cm x 5 cm that is occupying her nasopharynx and abutting the base of her skull. The mass appears to be mostly made up of necrotic (dead) lymphoid tissue. These "dead" lymph glands have swollen and squeezed together enough to seal off her left nasal passage completely. In an around this mass is a thick yellow viscous mucus material that is made of up dead cells. Probably dead white blood cells, and the mucus has become impacted because the blocking lymphoid mass is not allowing it to drain properly. In addition to all this there are several Supraclavicular lymph nodes on her left hand side (near the collar bone) which appear to be necrotic as well.
So from all this I have composed a working theory as to what has happened. First let me lay out the time line of events:
On 9/21 Ann started running a fever and also complained of a little tickle in the back of her throat on the right hand side. Ann started Biaxin to combat what ever infection was occurring.
On 9/23 she had a single lymph node present on the left side of her jaw (near the suprajugular area). It was swollen and tender with a diameter of approximately 1 cm.
On 9/26 the lymph node had nearly completely resolved and her fever broke.
On 10/1 Ann reported a sore throat on the left side along with an increasing ear ache on the left hand side of her head.
On 10/3 A follow up with and ENT in Baton Rouge revealed an 1 cm ulcer on the left hand inside of Ann's throat. Additionally her throat was observed to be red. Ann began taking 1000mg of Valtrex.
On 10/4 Ann visited her local hematologist for a routine appointment. Her CBC came back with an elevated WBC count of 9.6 K/uL. Her HGB was 12.2 G/DL and her PLTS were elevated to 569 K/uL. LDH is 204 IU/L BR hematologist theorizes that this a lagging indicator of the new immune system fighting infection. He except it to clear up shortly. Ann has a single incident of sudden vomiting that night.
On 10/6 Ann notes that her appetite is not quite what has been. She has a incident of nausea after eating. She claims it is because of sinus drainage.
On 10/7 Ann starts to run another low grade fever which resolves itself. She again has another episode of nausea and vomiting after eating.
On 10/8 Ann is uninterested in eating and has several episodes of diarrhea along with persistent nausea. Late night she begins to run a fever which exceeds 100.5 F.
On 10/9 I returned her to MDA suspecting GVHD of the gut. At MDA her 1st CBC comes back with WBC of 4.4 K/uL , HGB 8.9 G/DL and PLTs of 342 K/uL. LDH was 431 IU/L.
OK so there is the time line. I suspect ( and remember kids, I'm a Mechanical Engineer and not a Doctor) that Ann picked up one, perhaps two infections around 9/20. The first may have been bacterial which was cleared with antibiotics. The second was an opportunistic viral infection. In theory that would explain the soreness of her throat first on the right hand and then on the left hand sides.
The viral infection attacked the left hand back of her throat and eventually entered her lymphatic system. The virus was probably EBV (although the tests are still not back on it yet), and in the process of it trying to replicate it mutated a white blood cell (B-Cell) in one of Ann's lymph nodes in her nasopharynx. One node drained into another, the malignancy spread and the nodes began to swell.
Eventually this put pressure on her ear canal and caused the ear ache she felt on 10/1. That persisted until the nodes drained releasing some internal pressure but spreading the contamination to a lower level of lymph nodes in her head and neck. The nasopharynx lymph nodes continued to swell and eventually blocked off the left hand sinus passage around this time.
Her new immune system may have mobilized to fight the viral infection as evidenced by the elevated WBC on 10/4. The WBC's produced at this time probably make up some of the very impacted mucosal material that is built up on top of the nasopharynx mass blockage in her left sinus. However, the critical damage was probably already inflicted by this point. A PTLD B-cell mutant had been cloning itself inside these inflamed impacted lymph nodes for approximately 14 days.
While I have no proof that the PTLD has not spread past Ann's lymph nodes to a more distant region of her body, I am hopeful. Principally because of the LDH levels that were recorded at Baton Rouge and the current ones at MDA. Neither level is elevated beyond what is the normal acceptable range. So I hope that the nausea and diarrhea is the product of necrotic drainage from the swollen lymph nodes and not tumor growths on her gut. Although I will admit that I have learned that PTLD can and sometime does manifest like that. We have a CT scan of Ann's abdomen tomorrow which should clear this up.
The hemoglobin and RBC drop in Ann's blood counts could be from the constant diarrhea she has been having. It is also a possible, but not very likely side effect of EBV running free in her blood stream. I am encouraged that her platelets and WBCs remain stable because I believe it tends to indicate that the problem has not affected her new baby bone marrow. If the PTLD was given time to advance to full lymphoma it undoubtedly would.
So in conclusion I think we are looking at a EBV viral infection that caused PTLD. Which in turn is limited to the head and neck. Low LDH numbers and Ann's marrow not being effected tend to support the assumption that this is an recent development and has not had more than 25 days to develop. Translation - I think we caught it very early and can treat it quickly.
So that's my theory...just remember you go to an ME to design turbines not for medical advice.
So what is MDA going to do about it? They answered that this morning. Rituximab (aka Rituxan) is the weapon of choice in fighting PTLD and it they are pretty confident that it will work. I understand the experience of getting it is similar to the Rabbit ATG that Ann got just before her transplant.
If thats the case then we are in for fever, chills, nausea, vomiting, rashes...fun stuff. They start the first infusion just as soon as the pharmacy delivers it to the BMT floor.
Wish us luck.
**Update**
Dr. Kebriaei just stopped by and has pretty roughly critiqued my theory. Turns out MDA is not 95% sure but more like 60%.
She still believes that the necrotic tissue and "abnormal cells" in Ann's lymph nodes could still be just a common infection. MDA's pathologists are working to get slides made and stained so that they can work out exactly what those necrotic cells are. Which as it turns out could be anything from simple dead cells (puss) to a rapidly dividing lymphoma. She still thinks that Ann's tummy troubles could be GVHD and will not rule out the possibility until the endoscope samples are back (still not yet). They are still going ahead with the Rituximab however, just to be on the safe side and because its not too risky.
Serves me right for trying to get ahead of the experts.
**Update II**
The Rituximab has arrived on the floor. Here goes nothing.
Today's blood work...
WBC 4.6 K/uL
RBC 2.74 M/uL
HGB 8.8 G/DL
PLT 437 K/uL
ANC 2.88 K/uL
No blasts or otherwise weird cells show up in the blood work. Now that that is out of the way let me give everyone the the details of what is happening right now.
MDA is 95% sure that Ann has something called Post-transplantation Lymphoproliferative Disorder or PTLD for short. It is a pre-cancerous condition that develops often because of infection by the Epstein Barr Virus. PTLD presents as a spectrum of problems ranging from Lymphadenopathy (swollen lymph nodes often painless and hard), diarrhea, and cramps. It is primarily detected by swollen masses in the head and neck of unexplained origin. It can cause lymphoid "tumors" in virtually every organ and if it is allowed to persist long enough it can progress into non-Hodgkin's Lymphoma.
So here is what Ann is dealing with right now. She has several swollen lymph nodes on the left hand side of her face. The most predominant is her superior deep jugular lymph node on her left side, which is swollen to about 2 cm and is hard and painless (this is what got biopsied yesterday. In addition there is a mass approximately 4 cm x 5 cm that is occupying her nasopharynx and abutting the base of her skull. The mass appears to be mostly made up of necrotic (dead) lymphoid tissue. These "dead" lymph glands have swollen and squeezed together enough to seal off her left nasal passage completely. In an around this mass is a thick yellow viscous mucus material that is made of up dead cells. Probably dead white blood cells, and the mucus has become impacted because the blocking lymphoid mass is not allowing it to drain properly. In addition to all this there are several Supraclavicular lymph nodes on her left hand side (near the collar bone) which appear to be necrotic as well.
So from all this I have composed a working theory as to what has happened. First let me lay out the time line of events:
On 9/21 Ann started running a fever and also complained of a little tickle in the back of her throat on the right hand side. Ann started Biaxin to combat what ever infection was occurring.
On 9/23 she had a single lymph node present on the left side of her jaw (near the suprajugular area). It was swollen and tender with a diameter of approximately 1 cm.
On 9/26 the lymph node had nearly completely resolved and her fever broke.
On 10/1 Ann reported a sore throat on the left side along with an increasing ear ache on the left hand side of her head.
On 10/3 A follow up with and ENT in Baton Rouge revealed an 1 cm ulcer on the left hand inside of Ann's throat. Additionally her throat was observed to be red. Ann began taking 1000mg of Valtrex.
On 10/4 Ann visited her local hematologist for a routine appointment. Her CBC came back with an elevated WBC count of 9.6 K/uL. Her HGB was 12.2 G/DL and her PLTS were elevated to 569 K/uL. LDH is 204 IU/L BR hematologist theorizes that this a lagging indicator of the new immune system fighting infection. He except it to clear up shortly. Ann has a single incident of sudden vomiting that night.
On 10/6 Ann notes that her appetite is not quite what has been. She has a incident of nausea after eating. She claims it is because of sinus drainage.
On 10/7 Ann starts to run another low grade fever which resolves itself. She again has another episode of nausea and vomiting after eating.
On 10/8 Ann is uninterested in eating and has several episodes of diarrhea along with persistent nausea. Late night she begins to run a fever which exceeds 100.5 F.
On 10/9 I returned her to MDA suspecting GVHD of the gut. At MDA her 1st CBC comes back with WBC of 4.4 K/uL , HGB 8.9 G/DL and PLTs of 342 K/uL. LDH was 431 IU/L.
OK so there is the time line. I suspect ( and remember kids, I'm a Mechanical Engineer and not a Doctor) that Ann picked up one, perhaps two infections around 9/20. The first may have been bacterial which was cleared with antibiotics. The second was an opportunistic viral infection. In theory that would explain the soreness of her throat first on the right hand and then on the left hand sides.
The viral infection attacked the left hand back of her throat and eventually entered her lymphatic system. The virus was probably EBV (although the tests are still not back on it yet), and in the process of it trying to replicate it mutated a white blood cell (B-Cell) in one of Ann's lymph nodes in her nasopharynx. One node drained into another, the malignancy spread and the nodes began to swell.
Eventually this put pressure on her ear canal and caused the ear ache she felt on 10/1. That persisted until the nodes drained releasing some internal pressure but spreading the contamination to a lower level of lymph nodes in her head and neck. The nasopharynx lymph nodes continued to swell and eventually blocked off the left hand sinus passage around this time.
Her new immune system may have mobilized to fight the viral infection as evidenced by the elevated WBC on 10/4. The WBC's produced at this time probably make up some of the very impacted mucosal material that is built up on top of the nasopharynx mass blockage in her left sinus. However, the critical damage was probably already inflicted by this point. A PTLD B-cell mutant had been cloning itself inside these inflamed impacted lymph nodes for approximately 14 days.
While I have no proof that the PTLD has not spread past Ann's lymph nodes to a more distant region of her body, I am hopeful. Principally because of the LDH levels that were recorded at Baton Rouge and the current ones at MDA. Neither level is elevated beyond what is the normal acceptable range. So I hope that the nausea and diarrhea is the product of necrotic drainage from the swollen lymph nodes and not tumor growths on her gut. Although I will admit that I have learned that PTLD can and sometime does manifest like that. We have a CT scan of Ann's abdomen tomorrow which should clear this up.
The hemoglobin and RBC drop in Ann's blood counts could be from the constant diarrhea she has been having. It is also a possible, but not very likely side effect of EBV running free in her blood stream. I am encouraged that her platelets and WBCs remain stable because I believe it tends to indicate that the problem has not affected her new baby bone marrow. If the PTLD was given time to advance to full lymphoma it undoubtedly would.
So in conclusion I think we are looking at a EBV viral infection that caused PTLD. Which in turn is limited to the head and neck. Low LDH numbers and Ann's marrow not being effected tend to support the assumption that this is an recent development and has not had more than 25 days to develop. Translation - I think we caught it very early and can treat it quickly.
So that's my theory...just remember you go to an ME to design turbines not for medical advice.
So what is MDA going to do about it? They answered that this morning. Rituximab (aka Rituxan) is the weapon of choice in fighting PTLD and it they are pretty confident that it will work. I understand the experience of getting it is similar to the Rabbit ATG that Ann got just before her transplant.
If thats the case then we are in for fever, chills, nausea, vomiting, rashes...fun stuff. They start the first infusion just as soon as the pharmacy delivers it to the BMT floor.
Wish us luck.
**Update**
Dr. Kebriaei just stopped by and has pretty roughly critiqued my theory. Turns out MDA is not 95% sure but more like 60%.
She still believes that the necrotic tissue and "abnormal cells" in Ann's lymph nodes could still be just a common infection. MDA's pathologists are working to get slides made and stained so that they can work out exactly what those necrotic cells are. Which as it turns out could be anything from simple dead cells (puss) to a rapidly dividing lymphoma. She still thinks that Ann's tummy troubles could be GVHD and will not rule out the possibility until the endoscope samples are back (still not yet). They are still going ahead with the Rituximab however, just to be on the safe side and because its not too risky.
Serves me right for trying to get ahead of the experts.
**Update II**
The Rituximab has arrived on the floor. Here goes nothing.
Day +139
It's me and I'm going to be perfectly up front. I feel rotten 24 hours a day. It's not like before with the leukemia. It's a new and insidious feeling that I could live without. One solid month of fevers, vomiting and diarrhea. I can't eat, or rather, one bite sends me into a hunched position with a stomach cramp and extreme diarrhea. Don't you wish you were me. I vomit at the strangest times and usually with no provocation. I heard someone make a weird noise with their nose on television and that set me off. I've dropped from a size 12 to a near 6 in a month. Worst diet ever.
The attending team had a few things to tell us today and none of it was what you'd consider "positive". I potentially have something called PTLD. It's not "cancer" per se. The doctor calls it a "complication". They both start with the letter "c" and involve me being trapped in the hospital. Perhaps I'm placing too fine a point on it, or some such.
To put it all in Ann-speak:
There is a lump on the left side of my neck roughly the size of a golf ball. It hurts because people keep poking it and sticking needles into it. When you look inside my mouth, it looks like my left tonsil is trying to invade my right tonsil. One side of my sinuses is completely obstructed, so breathing and talking at the same time happens to be my favorite past time. I have a necrotic mass of "yellow" goo in my left sinus. This is according to the head and neck doctor that did a flexible scope exam. He didn't want to touch it in case it was leukemic or what have you. I just suspect that I've been incubating that little pet for the last month. It hurts my stomach to drink water. It hurts to eat.
I have had scopes shoved into every available orifice and that is not an exaggeration. I don't remember the endoscopy or the flexible whatever you call it that went into my bum. God bless medication. The flexible scope of my sinuses and tonsils wasn't bad, but it was weird when the doctor started touching my tonsils with the scope while it was down my nose.
I'm losing muscle tone again. There is an IV in my arm. I get a new one every few days because they go bad and my arm starts to hurt.
Chris is trying to distract me with knitting paraphernalia. Poor guy has to go to a craft store and stand in no man's land trying to remember what I told him to bring back. I think I'll keep him around for a bit longer. :)
It's me and I'm going to be perfectly up front. I feel rotten 24 hours a day. It's not like before with the leukemia. It's a new and insidious feeling that I could live without. One solid month of fevers, vomiting and diarrhea. I can't eat, or rather, one bite sends me into a hunched position with a stomach cramp and extreme diarrhea. Don't you wish you were me. I vomit at the strangest times and usually with no provocation. I heard someone make a weird noise with their nose on television and that set me off. I've dropped from a size 12 to a near 6 in a month. Worst diet ever.
The attending team had a few things to tell us today and none of it was what you'd consider "positive". I potentially have something called PTLD. It's not "cancer" per se. The doctor calls it a "complication". They both start with the letter "c" and involve me being trapped in the hospital. Perhaps I'm placing too fine a point on it, or some such.
To put it all in Ann-speak:
There is a lump on the left side of my neck roughly the size of a golf ball. It hurts because people keep poking it and sticking needles into it. When you look inside my mouth, it looks like my left tonsil is trying to invade my right tonsil. One side of my sinuses is completely obstructed, so breathing and talking at the same time happens to be my favorite past time. I have a necrotic mass of "yellow" goo in my left sinus. This is according to the head and neck doctor that did a flexible scope exam. He didn't want to touch it in case it was leukemic or what have you. I just suspect that I've been incubating that little pet for the last month. It hurts my stomach to drink water. It hurts to eat.
I have had scopes shoved into every available orifice and that is not an exaggeration. I don't remember the endoscopy or the flexible whatever you call it that went into my bum. God bless medication. The flexible scope of my sinuses and tonsils wasn't bad, but it was weird when the doctor started touching my tonsils with the scope while it was down my nose.
I'm losing muscle tone again. There is an IV in my arm. I get a new one every few days because they go bad and my arm starts to hurt.
Chris is trying to distract me with knitting paraphernalia. Poor guy has to go to a craft store and stand in no man's land trying to remember what I told him to bring back. I think I'll keep him around for a bit longer. :)
Monday, October 15, 2007
Abnormal Cells Found
D +138
Today MDA did a CT Scan and Fine Needle Aspiration (FNA) of Ann's "tonsil". It turns out not to be a "tonsil" after all, but some type of mass that just happens to be near the lymph nodes on her jaw line.
Our doctor indicated that the mass looked like a lump of necrotic tissue on the CT Scan.
The FNA of the mass showed it contained abnormal cells. Not enough were collected to perform flow cytometery so slides are being prepared. They will be ready Wednesday.
I would like to be optimistic, but this all but rules out GVHD, bacteria or viruses as the source of Ann's low grade fever, stomach cramps and diarrhea.
Today MDA did a CT Scan and Fine Needle Aspiration (FNA) of Ann's "tonsil". It turns out not to be a "tonsil" after all, but some type of mass that just happens to be near the lymph nodes on her jaw line.
Our doctor indicated that the mass looked like a lump of necrotic tissue on the CT Scan.
The FNA of the mass showed it contained abnormal cells. Not enough were collected to perform flow cytometery so slides are being prepared. They will be ready Wednesday.
I would like to be optimistic, but this all but rules out GVHD, bacteria or viruses as the source of Ann's low grade fever, stomach cramps and diarrhea.
Saturday, October 13, 2007
The Fishing Expedition Continues
D +136
Today's labs looked good...
WBC 4.5 K/uL
RBC 2.72 M/uL
HGB 8.6 G/DL
PLT 372 K/uL
ANC 3.05 K/uL
Here is the list of things we were worried about yesterday:
1) Possible GVHD of the gut and or sinuses
2) Possible infection by something in the herpes virus family (EBV, CMV, etc)
3) Ann running a low grade fever
4) Ann losing weight because of lack of appetite and diarrhea
After a visit with the attending transplant physician and the head and neck specialist this is what our current list looks like:
1) Possible GVHD of the gut and or sinuses
2) Swollen tonsil
3) Secondary Lymphoma caused by a virus like EBV
4) Recurrent but isolated ALL
5) A 5mm nodule found in one of Ann's lungs which could be anything from lung cancer to a fungal infection
6) Possible infection by something in the herpes virus family (EBV, CMV, etc)
7) Ann running a low grade fever
8) Ann losing weight because of lack of appetite and diarrhea
I'll try to cover these point by point, but honestly I am pretty tired and a bit despondent.
MDA is on a "fishing expedition". Which means that they understand that why Ann came back (fever, diarrhea, etc) is normally caused by GVHD. However, as of yesterday evening they have not been able to visually identify anything that looks like GVHD after an endoscope. So they have cast the net very wide to see what, if anything turns up. This morning the attending physician delivered the above laundry list of things that they have discovered or are checking on. I'll cover the scariest first.
Secondary Lymphoma is something that can happen to patients who have had their immune system suppressed or compromised (e.g. a bone marrow transplant). A virus like Epstein Barr (EBV) or Mono can enter the body of such a person and attack a type of white cell called a B-Cell in the lymph glands. The goal of the virus is to make more copies of itself, but occasionally this goes haywire and the result is a mutation that gives rise to a clone. Which we call Lymphoma. If left to its own devices this clone will begin to proliferate in much the same way as any other blood cancer would until it eventually infiltrates the bone marrow and displaces all the healthy cells there.
Why are they worried about it? Before we came to MDA, Ann came down with a virus which presented with a sore throat, ulcer in her throat, and a raised lymph node on the side of her neck. All of these cleared up, but on returning to MDA one of the first things they did was a CT scan of her chest, head and neck. From that they learned that one of Ann's tonsils is still swollen and the tonsil is part of the lymphatic system. I was surprised to find out that Ann still had her tonsils. I thought that everyone had them removed at childhood as a routine procedure, but I guess not. What MDA plans to do about it at this point is less clear.
A head and neck specialist who paid us a visit today scoped Ann and discovered a large plug of thick yellow mucus and tissue in her sinus cavity on the left side above her swollen tonsil. When he told us about it Ann asked if he could just blow it out or extract it, because it's doing nothing but contributing to her misery.
He said no because it is possible that the leukemia that Ann went through the CBT to get rid of was in fact forced out of her bones and blood, but didn't get completely evicted. This yellow crap could in fact be leukemic cells on the lamb from the baby stem cells. Sucking, blowing or manipulating them could spread them to a spot that Ann's new immune system isn't prepared to contain them. Thus allowing them to spread. MDA plans to do a biopsy of the "snot" Monday or Tuesday. Results should take another day or two, then maybe they can extract it.
Next is my favorite so far, the Single Pulmonary Nodule (SPN). This one hit us completely out of left field and put both of us at DEFCON 2. Turns out that back in August MDA did a CT scan of Ann's chest when she was readmitted to the hospital for a little fever. At that time they found a 3mm nodule and didn't mention it to us. Now it turns out that the 3mm diameter nodule has grown 2mm or at least is being imaged from a slightly different position.
Assuming it is approximately spherical (V = 4/3 *pi * (d/2)^3) in shape it would represent about a 5 fold increase in volume in roughly 60 days! So what is it? It could be fungal, bacterial, GVHD, viral, or lung cancer.
Wow! Imagine that: leukemia, transplant and then lung cancer. If you want to know what contemplating that scenario is like go into your back yard and dig a 30 foot wide by 20 foot deep hole in the ground. Fill the hole with water and drop a 15 foot very hungry tiger shark into it. Next put a metal extension ladder in across the hole and walk out onto it holding a lamp from your living room. As the shark swims below you, have a friend or neighbor grab your garden hose and randomly spray water at you...make sure he aims for the plugged in lamp you're holding. That just about approximates the overall if not specific effect.
The attending doctor this morning seemed to think it was probably fungal, but they don't have a decided course of action yet. I'm planning to speak to Dr. Kebrieai extensively about this Monday. I have seen too many people on the net and a few here at MDA succumb to lung complications to even risk the life of my best friend in the world and soul mate on it!
So finally we come to the end of the list which seems kinda mundane now. The fever and diarrhea were the reason we came into MDA in the first place. Ann is still having diarrhea and is still periodically running a low grade fever. Some bacterial cultures have come back negative, some are still pending. The viral cultures are all still pending as far as I know (they take longer to run). The biopsy's from yesterday's endoscope will be ready sometime early next week.
I just want MDA to identify the problem so they can treat it and Ann can go back to eating. She has lost 14 lbs in the last two weeks or so and is miserable. Maybe it was wrong for us to expect a quick resolution based on the relatively smooth sailing we have had up till now, but we are getting sick of the fishing expedition.
Today's labs looked good...
WBC 4.5 K/uL
RBC 2.72 M/uL
HGB 8.6 G/DL
PLT 372 K/uL
ANC 3.05 K/uL
Here is the list of things we were worried about yesterday:
1) Possible GVHD of the gut and or sinuses
2) Possible infection by something in the herpes virus family (EBV, CMV, etc)
3) Ann running a low grade fever
4) Ann losing weight because of lack of appetite and diarrhea
After a visit with the attending transplant physician and the head and neck specialist this is what our current list looks like:
1) Possible GVHD of the gut and or sinuses
2) Swollen tonsil
3) Secondary Lymphoma caused by a virus like EBV
4) Recurrent but isolated ALL
5) A 5mm nodule found in one of Ann's lungs which could be anything from lung cancer to a fungal infection
6) Possible infection by something in the herpes virus family (EBV, CMV, etc)
7) Ann running a low grade fever
8) Ann losing weight because of lack of appetite and diarrhea
I'll try to cover these point by point, but honestly I am pretty tired and a bit despondent.
MDA is on a "fishing expedition". Which means that they understand that why Ann came back (fever, diarrhea, etc) is normally caused by GVHD. However, as of yesterday evening they have not been able to visually identify anything that looks like GVHD after an endoscope. So they have cast the net very wide to see what, if anything turns up. This morning the attending physician delivered the above laundry list of things that they have discovered or are checking on. I'll cover the scariest first.
Secondary Lymphoma is something that can happen to patients who have had their immune system suppressed or compromised (e.g. a bone marrow transplant). A virus like Epstein Barr (EBV) or Mono can enter the body of such a person and attack a type of white cell called a B-Cell in the lymph glands. The goal of the virus is to make more copies of itself, but occasionally this goes haywire and the result is a mutation that gives rise to a clone. Which we call Lymphoma. If left to its own devices this clone will begin to proliferate in much the same way as any other blood cancer would until it eventually infiltrates the bone marrow and displaces all the healthy cells there.
Why are they worried about it? Before we came to MDA, Ann came down with a virus which presented with a sore throat, ulcer in her throat, and a raised lymph node on the side of her neck. All of these cleared up, but on returning to MDA one of the first things they did was a CT scan of her chest, head and neck. From that they learned that one of Ann's tonsils is still swollen and the tonsil is part of the lymphatic system. I was surprised to find out that Ann still had her tonsils. I thought that everyone had them removed at childhood as a routine procedure, but I guess not. What MDA plans to do about it at this point is less clear.
A head and neck specialist who paid us a visit today scoped Ann and discovered a large plug of thick yellow mucus and tissue in her sinus cavity on the left side above her swollen tonsil. When he told us about it Ann asked if he could just blow it out or extract it, because it's doing nothing but contributing to her misery.
He said no because it is possible that the leukemia that Ann went through the CBT to get rid of was in fact forced out of her bones and blood, but didn't get completely evicted. This yellow crap could in fact be leukemic cells on the lamb from the baby stem cells. Sucking, blowing or manipulating them could spread them to a spot that Ann's new immune system isn't prepared to contain them. Thus allowing them to spread. MDA plans to do a biopsy of the "snot" Monday or Tuesday. Results should take another day or two, then maybe they can extract it.
Next is my favorite so far, the Single Pulmonary Nodule (SPN). This one hit us completely out of left field and put both of us at DEFCON 2. Turns out that back in August MDA did a CT scan of Ann's chest when she was readmitted to the hospital for a little fever. At that time they found a 3mm nodule and didn't mention it to us. Now it turns out that the 3mm diameter nodule has grown 2mm or at least is being imaged from a slightly different position.
Assuming it is approximately spherical (V = 4/3 *pi * (d/2)^3) in shape it would represent about a 5 fold increase in volume in roughly 60 days! So what is it? It could be fungal, bacterial, GVHD, viral, or lung cancer.
Wow! Imagine that: leukemia, transplant and then lung cancer. If you want to know what contemplating that scenario is like go into your back yard and dig a 30 foot wide by 20 foot deep hole in the ground. Fill the hole with water and drop a 15 foot very hungry tiger shark into it. Next put a metal extension ladder in across the hole and walk out onto it holding a lamp from your living room. As the shark swims below you, have a friend or neighbor grab your garden hose and randomly spray water at you...make sure he aims for the plugged in lamp you're holding. That just about approximates the overall if not specific effect.
The attending doctor this morning seemed to think it was probably fungal, but they don't have a decided course of action yet. I'm planning to speak to Dr. Kebrieai extensively about this Monday. I have seen too many people on the net and a few here at MDA succumb to lung complications to even risk the life of my best friend in the world and soul mate on it!
So finally we come to the end of the list which seems kinda mundane now. The fever and diarrhea were the reason we came into MDA in the first place. Ann is still having diarrhea and is still periodically running a low grade fever. Some bacterial cultures have come back negative, some are still pending. The viral cultures are all still pending as far as I know (they take longer to run). The biopsy's from yesterday's endoscope will be ready sometime early next week.
I just want MDA to identify the problem so they can treat it and Ann can go back to eating. She has lost 14 lbs in the last two weeks or so and is miserable. Maybe it was wrong for us to expect a quick resolution based on the relatively smooth sailing we have had up till now, but we are getting sick of the fishing expedition.
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