Sorry to keep everyone waiting...We finished up in IPOP around 1:30pm. The oncology resident put another stitch in around Trish's catheter and it stopped bleeding. The radiology surgeon that placed the line, checked it in recovery and thought it was fine, but it wasn't. The entry hole was just too big and needed to be sewn tighter around the catheter.
The toughest part was that the resident placed the stitch with no lidocaine and Trish's skin is sensitive so it hurt like hell. We went up to Aunt Mary's last night and Trish is doing fine.
I'm a little bummed after the Gator disaster last night. Tebow looked bad till the end and the whole first half was horrible. So much for the miracle repeat of the Gators.
We'll head back to our apartment at JHH after dinner tonight and start the first day of the rest of our lives at 9am with an IPOP appointment and than ECP starts at 1pm. Trish is feeling stronger and eating well.
Sunday, September 30, 2007
Saturday, September 29, 2007
Saturday Morning Update
Oh what a night...If you haven't read Friday's post, you may want to start there (below) and than come back to read this one.
Trish's Hickmann was replaced with a Hickman Pheresis catheter yesterday. This catheter is larger than the regular Hickman in terms of tube circumference and it ends directly in Trish's heart (right atrium) instead of in the vein leading to the right atrium (not really sure why).
The IPOP nurse changed the dressing at about 6pm Friday and gave me what she thought would be plenty of supplies to change it over the weekend.
At 10:00pm, I changed Trish's dressing and called the CVDL on-call doctor because the gauze had become saturated and she was still leaking. He told us to place a weight on the site and have Trish sit up at a 45 degree angle. In the hospital they usually use a liter bag of saline for weight, we used a phone book.
At about 3am, Trish woke up to go to the bathroom and her chest and side and bed were covered in blood. I paged the IPOP on-call attending and instead of changing the dressing added gauze to absorb the leaking blood and wrapped towels around Trish's chest. The IPOP doctor said that there was probably no eminent danger and that we could either go to the ER or wait till 7am to go to IPOP. Having experienced Hopkins ER before, we chose to try and sleep for a few hours and than head to IPOP. We were the first people in IPOP this morning, even beating the nurses in.
They changed her dressing, took her blood, put a cold compress on the area and weighted it with a bag of saline. Her platelet counts was at 66 only down 2 from yesterday and still 16 above the minimum required for line placement. Her hematacrit held to yesterday's number of 27.8 (it likely would have been higher if she hadn't lost any blood). It's about 10am now and Trish just finished receiving a bag of platelets and will get a unit of red as well.
If they get the bleeding under control, we will try to head up to Aunt Mary's house, spending the night there before heading back Sunday night. As long as they get this under control, she is still green lighted to start ECP Monday.
Two other significant things.... I forgot to report yesterday, that for the first time in a while, Trish gained weight -- only a half pound, but it is going up. Today, her billirubin went down, not by a significant amount, but it went down....the other liver enzymes also went down from yesterday and they appear to be continuing a good trend.
Trish's Hickmann was replaced with a Hickman Pheresis catheter yesterday. This catheter is larger than the regular Hickman in terms of tube circumference and it ends directly in Trish's heart (right atrium) instead of in the vein leading to the right atrium (not really sure why).
The IPOP nurse changed the dressing at about 6pm Friday and gave me what she thought would be plenty of supplies to change it over the weekend.
At 10:00pm, I changed Trish's dressing and called the CVDL on-call doctor because the gauze had become saturated and she was still leaking. He told us to place a weight on the site and have Trish sit up at a 45 degree angle. In the hospital they usually use a liter bag of saline for weight, we used a phone book.
At about 3am, Trish woke up to go to the bathroom and her chest and side and bed were covered in blood. I paged the IPOP on-call attending and instead of changing the dressing added gauze to absorb the leaking blood and wrapped towels around Trish's chest. The IPOP doctor said that there was probably no eminent danger and that we could either go to the ER or wait till 7am to go to IPOP. Having experienced Hopkins ER before, we chose to try and sleep for a few hours and than head to IPOP. We were the first people in IPOP this morning, even beating the nurses in.
They changed her dressing, took her blood, put a cold compress on the area and weighted it with a bag of saline. Her platelet counts was at 66 only down 2 from yesterday and still 16 above the minimum required for line placement. Her hematacrit held to yesterday's number of 27.8 (it likely would have been higher if she hadn't lost any blood). It's about 10am now and Trish just finished receiving a bag of platelets and will get a unit of red as well.
If they get the bleeding under control, we will try to head up to Aunt Mary's house, spending the night there before heading back Sunday night. As long as they get this under control, she is still green lighted to start ECP Monday.
Two other significant things.... I forgot to report yesterday, that for the first time in a while, Trish gained weight -- only a half pound, but it is going up. Today, her billirubin went down, not by a significant amount, but it went down....the other liver enzymes also went down from yesterday and they appear to be continuing a good trend.
Friday, September 28, 2007
Friday Update
The day is not over yet and it is already too long. We started at 9am this morning and the best part of it was that we were able to visit with our friends Annie and Joe. After the blood draw this morning we headed to CVDL for replacement of Trish's Hickman with an apheresis catheter. It is essentially a Hickman, but the tubes are bigger (thicker) to accommodate the faster flow of blood during pheresis. We showed up on time for our 11am appointment, but Trish didn't get taken back till 1pm and started until 2pm.
We finally got back to IPOP around 4:30pm and she is still waiting to start her red blood transfusion. One of the reasons we were here at 9 this morning was because they thought that Trish may need platelets to bring her counts above 50 for the line placement. She was at 68 all by herself, so no transfusion was needed.
Her hematacrit (packed cell level or reds) was low though at only 27, so she is getting a unit of red now and may get two more on Monday morning if she is below 38, for ECP they want her at 38. So we will likely start our day early on Monday as well and the pheresis will last at least 3-4 hours, so it will be a long day as well.
ECP could very well be our "Lorenzo's Oil" magic cure or it could be a bust. The oncologists are pessimisstic and the dermatologists are optimistic. No one really knows what to expect. We just know that we have a lot of folks with strong beliefs behind us and a lot who have no belief who now finding themselves asking for divine intervention.
Dr. Meade has scheduled another transjugular liver biopsy (not fun) for Tuesday. The hope is that they can find a reason other than GvH for her elevated liver function and that it is something they can treat conventionally while Trish is getting ECP. Trish's nurse practitioner also mentioned that Dr. Meade is considering putting her on another immuno suppressant med while she gets ECP (likely Enbrael -- that medicine for psoriasis with the flying character trying to imitate superman in the commercial).
Trish is starting to be a little more than scared, as I know we all are, but she continues to be determined to give it her best shot. Again, thank you everyone for your continued support and prayers.
We finally got back to IPOP around 4:30pm and she is still waiting to start her red blood transfusion. One of the reasons we were here at 9 this morning was because they thought that Trish may need platelets to bring her counts above 50 for the line placement. She was at 68 all by herself, so no transfusion was needed.
Her hematacrit (packed cell level or reds) was low though at only 27, so she is getting a unit of red now and may get two more on Monday morning if she is below 38, for ECP they want her at 38. So we will likely start our day early on Monday as well and the pheresis will last at least 3-4 hours, so it will be a long day as well.
ECP could very well be our "Lorenzo's Oil" magic cure or it could be a bust. The oncologists are pessimisstic and the dermatologists are optimistic. No one really knows what to expect. We just know that we have a lot of folks with strong beliefs behind us and a lot who have no belief who now finding themselves asking for divine intervention.
Dr. Meade has scheduled another transjugular liver biopsy (not fun) for Tuesday. The hope is that they can find a reason other than GvH for her elevated liver function and that it is something they can treat conventionally while Trish is getting ECP. Trish's nurse practitioner also mentioned that Dr. Meade is considering putting her on another immuno suppressant med while she gets ECP (likely Enbrael -- that medicine for psoriasis with the flying character trying to imitate superman in the commercial).
Trish is starting to be a little more than scared, as I know we all are, but she continues to be determined to give it her best shot. Again, thank you everyone for your continued support and prayers.
Wednesday, September 26, 2007
Wednesday Update
Trish was real tired today and she knew her billi would be high...and it was.
We started the day with breakfast at 6am and back to sleep for a few hours, Trish needed to fast at least 6 hours before 1pm as she was scheduled to have an ulta-sound of her liver to check and see how it was doing with the elevated billi.
We than went to IPOP for blood draw, vitals and weight. Trish's weight is still an issue, but it has been holding steady for the last few visits at 74 pounds. Her weight becomes even more critical because she is at the minimum weight for the magic treatment (extracorporeal photopheresis, ECP). If her weight dips again it may prevent her from getting the treatment that can save her life. Her hematacrit and platlet levels need to be at a minimum of 30 for the treatment as well. Normally hematology will let these go a little lower before they intervene with transfusions. We'll have to monitor that as well going forward.
We got to see the magic machine today. Trish was given a pair of clear ugly goggles to wear after treatment. The goggles will stop her eyes from forming cataracts -- your eyes normal reaction to UV rays (So wear your sunglasses - everyone!). Based upon a study of ECP at MD Anderson, it should take an average of 48 days before we see some significant results, results can occur as early as 11 days and as late as 91 days. Dr. Meade is hoping to see results in 30 days, at least enough to declare Trish stable enough to go home and continue treatment.
She'll start treatments twice a week this Monday a 1pm (just in case there is anyone out there wanting to start a palanca effort).
We are off tomorrow, but Friday starts at 9am with a platlet infusion, labs and a swap of Trish's current Hickman for one with larger lumens to handle the pheresis.
For those of you who have been checking the site hourly today for an update, my apologies. I actually have been writing this update over about four hours as I have done laundry, checked on a prescription for Trish, changed her bed sheets, talked to other household caregivers, written Dr. G and lots of other stuff. Now I need to drive out to a Walgreens to get a special skin oinment the dermatologist we saw today wrote for Trish.
Tomorrow on our day off Trish's Uncle Tom and Aunt Emma will visit with Aunt Mary.
We started the day with breakfast at 6am and back to sleep for a few hours, Trish needed to fast at least 6 hours before 1pm as she was scheduled to have an ulta-sound of her liver to check and see how it was doing with the elevated billi.
We than went to IPOP for blood draw, vitals and weight. Trish's weight is still an issue, but it has been holding steady for the last few visits at 74 pounds. Her weight becomes even more critical because she is at the minimum weight for the magic treatment (extracorporeal photopheresis, ECP). If her weight dips again it may prevent her from getting the treatment that can save her life. Her hematacrit and platlet levels need to be at a minimum of 30 for the treatment as well. Normally hematology will let these go a little lower before they intervene with transfusions. We'll have to monitor that as well going forward.
We got to see the magic machine today. Trish was given a pair of clear ugly goggles to wear after treatment. The goggles will stop her eyes from forming cataracts -- your eyes normal reaction to UV rays (So wear your sunglasses - everyone!). Based upon a study of ECP at MD Anderson, it should take an average of 48 days before we see some significant results, results can occur as early as 11 days and as late as 91 days. Dr. Meade is hoping to see results in 30 days, at least enough to declare Trish stable enough to go home and continue treatment.
She'll start treatments twice a week this Monday a 1pm (just in case there is anyone out there wanting to start a palanca effort).
We are off tomorrow, but Friday starts at 9am with a platlet infusion, labs and a swap of Trish's current Hickman for one with larger lumens to handle the pheresis.
For those of you who have been checking the site hourly today for an update, my apologies. I actually have been writing this update over about four hours as I have done laundry, checked on a prescription for Trish, changed her bed sheets, talked to other household caregivers, written Dr. G and lots of other stuff. Now I need to drive out to a Walgreens to get a special skin oinment the dermatologist we saw today wrote for Trish.
Tomorrow on our day off Trish's Uncle Tom and Aunt Emma will visit with Aunt Mary.
Tuesday, September 25, 2007
Just a quick off day update
Trish and I slept in today. We than stopped at the mall on the way to Aunt Mary's to upgrade Trish's cell phone. The current one would work sometimes and not at others -- it has been dropped a lot, especially in the hospital.
We were able to get her a new phone without a contract extension....It was supposed to cost $80, but I think the girl felt sorry for us and sold it to us as a pay as you go phone for only $39 and swapped the SIM card to keep it on our plan.
Tomorrow will be a busy day. We go to IPOP at 10:30 to have blood drawn, than to Dermatology for an eval (they own the ECP machine at Hopkins), thanfor an ultrasound of the abdomen to see if everything is alright there. In between all these visits, we are hoping to catch up with Dr. Griffiths. Some of our Hackerman House friends, got to go home today. As e complained about his time away from home, he was polite enough to remember that we had been away for just over double the time and were further away from home, so we have had no weekend jaunts back.
I am expecting to post any update late in the day tomorrow and hope to have only good things to report. In the meantime, don't stop praying, don't stop believing. We aren't.
We were able to get her a new phone without a contract extension....It was supposed to cost $80, but I think the girl felt sorry for us and sold it to us as a pay as you go phone for only $39 and swapped the SIM card to keep it on our plan.
Tomorrow will be a busy day. We go to IPOP at 10:30 to have blood drawn, than to Dermatology for an eval (they own the ECP machine at Hopkins), thanfor an ultrasound of the abdomen to see if everything is alright there. In between all these visits, we are hoping to catch up with Dr. Griffiths. Some of our Hackerman House friends, got to go home today. As e complained about his time away from home, he was polite enough to remember that we had been away for just over double the time and were further away from home, so we have had no weekend jaunts back.
I am expecting to post any update late in the day tomorrow and hope to have only good things to report. In the meantime, don't stop praying, don't stop believing. We aren't.
Monday, September 24, 2007
Not a great day...........
So today marks a new milestone in our journey and it is not one we are particularly happy about...
We met with Dr. Meade today - before the counts came in -- He said he spent his weekend thinking about us, making calls on our behalf and trying to decide what to do next.
As you know from our writings, it was our hope that being off the Zyvox would help return Trish's liver function numbers to their downward trend and bring an end to their plateau or rise. Today, Trish's billirubin rose 4.3 points. The liver enzymes did go down just a little bit (you can see these on the chart, by now you should know where to click for it).
Dr. Meade offered us two "soups": ECP - which we have discussed here before and a single drug (I forget the name), two shots a week. The two shot a week routine had some pretty scary side effects. Many people on it got fatal infections that they could not fight or be helped with fighting with any success.
ECP has few side effects, but will take up to a month to know if it is working and Trish may need to be on it for six months to year(s) to keep things in check.
At this point we are running low on options and heavy on faith, prayer and your support. If Trish's liver function doesn't get under control soon, she could be facing fatal liver failure.
We are not sure at this point when ECP will begin. Our next IPOP appointment is on Wednesday. Probably the hardest part of arranging for the treatment is insurance approval. We hope we will be able to start treatment on Wednesday, but it may be the end of the week.
For now, we could sure use our prayers and support. We will continue to be at the Hackerman House, if you wish to send Trish well wishes in the mail.
Today was a tough day. Lots of tears. But it is the first day of our next battle and we will fight it with everything we have.
We met with Dr. Meade today - before the counts came in -- He said he spent his weekend thinking about us, making calls on our behalf and trying to decide what to do next.
As you know from our writings, it was our hope that being off the Zyvox would help return Trish's liver function numbers to their downward trend and bring an end to their plateau or rise. Today, Trish's billirubin rose 4.3 points. The liver enzymes did go down just a little bit (you can see these on the chart, by now you should know where to click for it).
Dr. Meade offered us two "soups": ECP - which we have discussed here before and a single drug (I forget the name), two shots a week. The two shot a week routine had some pretty scary side effects. Many people on it got fatal infections that they could not fight or be helped with fighting with any success.
ECP has few side effects, but will take up to a month to know if it is working and Trish may need to be on it for six months to year(s) to keep things in check.
At this point we are running low on options and heavy on faith, prayer and your support. If Trish's liver function doesn't get under control soon, she could be facing fatal liver failure.
We are not sure at this point when ECP will begin. Our next IPOP appointment is on Wednesday. Probably the hardest part of arranging for the treatment is insurance approval. We hope we will be able to start treatment on Wednesday, but it may be the end of the week.
For now, we could sure use our prayers and support. We will continue to be at the Hackerman House, if you wish to send Trish well wishes in the mail.
Today was a tough day. Lots of tears. But it is the first day of our next battle and we will fight it with everything we have.
Friday, September 21, 2007
Friday -- and the news is no different
Hi! How are you doing? I am pretty tired. Both in the sense of exhaustion and the sense that I am tired of hearing the same broken record and no good news (for that matter there hasn't been a lot of bad news either).
Trish's Billrubin is a little higher today, some of the enzymes are a little lower. The liver stuff is not even the worse mountain we are climbing....Somehow we need to get Trish to eat more and more often. They say the liver involvement could be slowing her ability/desire to eat, but today she hit an all time low weight of 73 pounds. Can we sart to pray for an appetite?! Could one of the great cooks of our time please start to eat more. Poor Trish, she is tired of all of us trying to get her to eat. It is THE topic of every visit. Nothing else will matter if she loses any more weight.
On to the medical stuff, today is the last day of Trish's zyvox antibiotic. Zyvox is known for reducing white and neutrophil counts and increasing the liver function numbers. The great hope is that by Monday, after two days off her 14 day regimen of zyvox, we will see her liver function return to its descent and the whie and neutrophils return to their rise (they have fallen greatly, but sill remain in the normal range.
If we do not see a drop in liver function next week, Dr. Meade will start another therapy. He is holding off on ECP as THE next therapy (if you want an explanation of ECP look afor an earlier post where I explain it), why? Because ECP is kind of like the chicken and the pig's level of commitment to breakfast -- the pig is a little more committed and so is ECP. While it is a safe routine, it takes 3- 6 hours and she'd need the treatment 1-3 times a week for 6 months to 3 years or longer.
He may use another treatment first and hold back on ECP until it is absolutely necessary. We found out that ECP is available at Memorial West, just about 1 mile from our house. Dr. Meade actually emailed the University of Miami today on our behalf. It is a great thing having so many doctors truly caring about the whole person and not just the treatment or how little time the can spend with you. I have to tell you that we made the right choice in choosing a BMT center and would urge you to do the same.
We are off from IPOP this weekend. Back on Monday. Tomorrow I will take Matt to the airpoort after we atch the Gator game at Aunt Mary's (if I can get it on pay-per-view) and than it is Trish's Mom's turn to head to the airport on Sunday.
As for Trish, she is tired, frustrated and hating the fact that she must use a wheelchair, to go everywhere. I hope we can get her eating soon and that she can gain back some of her energy very soon.
Thank you for your continued support and prayers.
Trish's Billrubin is a little higher today, some of the enzymes are a little lower. The liver stuff is not even the worse mountain we are climbing....Somehow we need to get Trish to eat more and more often. They say the liver involvement could be slowing her ability/desire to eat, but today she hit an all time low weight of 73 pounds. Can we sart to pray for an appetite?! Could one of the great cooks of our time please start to eat more. Poor Trish, she is tired of all of us trying to get her to eat. It is THE topic of every visit. Nothing else will matter if she loses any more weight.
On to the medical stuff, today is the last day of Trish's zyvox antibiotic. Zyvox is known for reducing white and neutrophil counts and increasing the liver function numbers. The great hope is that by Monday, after two days off her 14 day regimen of zyvox, we will see her liver function return to its descent and the whie and neutrophils return to their rise (they have fallen greatly, but sill remain in the normal range.
If we do not see a drop in liver function next week, Dr. Meade will start another therapy. He is holding off on ECP as THE next therapy (if you want an explanation of ECP look afor an earlier post where I explain it), why? Because ECP is kind of like the chicken and the pig's level of commitment to breakfast -- the pig is a little more committed and so is ECP. While it is a safe routine, it takes 3- 6 hours and she'd need the treatment 1-3 times a week for 6 months to 3 years or longer.
He may use another treatment first and hold back on ECP until it is absolutely necessary. We found out that ECP is available at Memorial West, just about 1 mile from our house. Dr. Meade actually emailed the University of Miami today on our behalf. It is a great thing having so many doctors truly caring about the whole person and not just the treatment or how little time the can spend with you. I have to tell you that we made the right choice in choosing a BMT center and would urge you to do the same.
We are off from IPOP this weekend. Back on Monday. Tomorrow I will take Matt to the airpoort after we atch the Gator game at Aunt Mary's (if I can get it on pay-per-view) and than it is Trish's Mom's turn to head to the airport on Sunday.
As for Trish, she is tired, frustrated and hating the fact that she must use a wheelchair, to go everywhere. I hope we can get her eating soon and that she can gain back some of her energy very soon.
Thank you for your continued support and prayers.
Thursday, September 20, 2007
Wednesday, September 19, 2007
Wednesday night Update
Sorry to keep you daily readers in suspense.....
Trish, her Mom and I had a nice day relaxing at Aunt Mary's House yesterday. Trish went for a short walk -- that was probably too long for her, but the weather was great and she enjoyed it.
She also ate the biggest meal she's had since being released for GvH treatment last week (or during the three weeks she was an inpatient).
We had Angel hair with chick peas (garbanzo beans), Aunt Mary's home made chicken fingers, caprese salad (tomato and mozzarella), and Zucchini pie. For desert some fresh farm picked peaches and water melon.
Trish looked dark green yesterday and more her color today. The yellow has faded, but is still visible in her eyes.
It was a slow day in IPOP today. The labs seemed to never come back. From a hematology standpoint Trish's counts were good. Red cells look to be made from Trish's new marrow post chemo, platelets continue to drop so she ma ge some more before her new marrow creates the platelets she needs by its self. From a liver function standpoint, we had the biggest increase since they stopped coming down. That may not be as scary as it sounds, because we did get confirmation that zyvox will cause the white and neutrophil cells to come down and that it will cause liver function numbers to go up. The billirubin has held steady in all this. She is on zyvox only till Friday and we hope that once she is off the zyvox her liver count will resume its downward trend and we will start counting the days till we can come home.
In the truly good news department. We received confirmation that the bone marrow biopsy taken just before discharge last week was clean and Leukemia (or anything else bad) free. That's great news, but anticlimatic, because that's the result we would have expected, this early and given the level of GvH Trish had.
One more good news item -- Dr. Meade mentioned ECP (extracorporeal photopheresis ) as the next (3rd) GvHd treatment that Trish will get if the liver function counts don't drop far enough, fast enough. This treatment would last a least six months. Because of the length of treatment he asked us to check on facilities near our house. We found one in Miami (at a hospital we wouldn't recommend to our worse enemy) and at Moffet in Tampa and Shands in Gainesville (both 5-6 hours away by car). My Mom called today with good news. The new cancer center at Memorial West (less than a mile from our house) has an ECP machine. This is great news. We are still hopeful that Trish will not need this treatment, but if she does we can come home.
Matt (our son) is coming up tomorrow. There's a day off from school tomorrow, he'll fly up tomorrow and back home on Saturday (so he can make his lacrosse game). It will be good to see him. Andy won't be able to come up because of work and other commitments this weekend. I know Trish will enjoy the visit.
Enough for now. We are off from IPOP tomorrow so, don't expect anything new till late Friday, unless something breaks tomorrow.
Trish, her Mom and I had a nice day relaxing at Aunt Mary's House yesterday. Trish went for a short walk -- that was probably too long for her, but the weather was great and she enjoyed it.
She also ate the biggest meal she's had since being released for GvH treatment last week (or during the three weeks she was an inpatient).
We had Angel hair with chick peas (garbanzo beans), Aunt Mary's home made chicken fingers, caprese salad (tomato and mozzarella), and Zucchini pie. For desert some fresh farm picked peaches and water melon.
Trish looked dark green yesterday and more her color today. The yellow has faded, but is still visible in her eyes.
It was a slow day in IPOP today. The labs seemed to never come back. From a hematology standpoint Trish's counts were good. Red cells look to be made from Trish's new marrow post chemo, platelets continue to drop so she ma ge some more before her new marrow creates the platelets she needs by its self. From a liver function standpoint, we had the biggest increase since they stopped coming down. That may not be as scary as it sounds, because we did get confirmation that zyvox will cause the white and neutrophil cells to come down and that it will cause liver function numbers to go up. The billirubin has held steady in all this. She is on zyvox only till Friday and we hope that once she is off the zyvox her liver count will resume its downward trend and we will start counting the days till we can come home.
In the truly good news department. We received confirmation that the bone marrow biopsy taken just before discharge last week was clean and Leukemia (or anything else bad) free. That's great news, but anticlimatic, because that's the result we would have expected, this early and given the level of GvH Trish had.
One more good news item -- Dr. Meade mentioned ECP (extracorporeal photopheresis ) as the next (3rd) GvHd treatment that Trish will get if the liver function counts don't drop far enough, fast enough. This treatment would last a least six months. Because of the length of treatment he asked us to check on facilities near our house. We found one in Miami (at a hospital we wouldn't recommend to our worse enemy) and at Moffet in Tampa and Shands in Gainesville (both 5-6 hours away by car). My Mom called today with good news. The new cancer center at Memorial West (less than a mile from our house) has an ECP machine. This is great news. We are still hopeful that Trish will not need this treatment, but if she does we can come home.
Matt (our son) is coming up tomorrow. There's a day off from school tomorrow, he'll fly up tomorrow and back home on Saturday (so he can make his lacrosse game). It will be good to see him. Andy won't be able to come up because of work and other commitments this weekend. I know Trish will enjoy the visit.
Enough for now. We are off from IPOP tomorrow so, don't expect anything new till late Friday, unless something breaks tomorrow.
Monday, September 17, 2007
Monday...plateau continues
Trish looked and felt great today when she woke up. She took a real shower this morning, she had been sponge bathing for a while now. On the count fronts -- the immune system looks great and the liver function looks to be taking a break from getting better...The enzymes counts are going up, but by very little (see "The Counts" in the left column). Trish's NP thinks the zyvox could be doing that, she'll check. They are giving Trish off tomorrow and we'll head up to Aunt Mary's for a visit. Back in on Wednesday. Her weight is still her biggest issue at the moment and a good pasta meal at Aunt Mary's should start to solve that.
Her skin is turning a lovely Italian olive as it transitions from yellow. We should have a good day tomorrow and relax the rest of today.
Her skin is turning a lovely Italian olive as it transitions from yellow. We should have a good day tomorrow and relax the rest of today.
Sunday, September 16, 2007
Sunday night
I can' wait for IPOP tomorrow...we'll get to see the nurse praitioner and maybe Dr. Meade... Trish's billirubin is heading down after going up one day, that's always good. The rest of the enzymes continue to plateau and we really need to see them go down. It will be interesting to hear what the NP and/or Dr. Meade say about the numbers. The differences are so slight that they are probably not alarmed, but they are definitely not headed south with the determination they had begun last week.
Trish is good but exhausted. Hopefully she will sleep well tonight, I know I should, as we have no IVs through the night and all of her evening pills are done. Despite her platelets being at 13, I was able to convince her nurse, who was able to convince "Dr. Platelet" to give her a bag. So we should see a jump in that number tomorrow. Part of getting platelets is pre-meds usually tylenol and benadryl. Trish refused the tylenol as it impairs liver function and took the benadryl which usually knocks her out for the day. So the sleepiness is not unexpected. I need to get some work done tonight, so look for another update probably Monday afternoon.
Trish is good but exhausted. Hopefully she will sleep well tonight, I know I should, as we have no IVs through the night and all of her evening pills are done. Despite her platelets being at 13, I was able to convince her nurse, who was able to convince "Dr. Platelet" to give her a bag. So we should see a jump in that number tomorrow. Part of getting platelets is pre-meds usually tylenol and benadryl. Trish refused the tylenol as it impairs liver function and took the benadryl which usually knocks her out for the day. So the sleepiness is not unexpected. I need to get some work done tonight, so look for another update probably Monday afternoon.
Saturday, September 15, 2007
Good News, Bad News - Keep praying
Well...mixed resuls today. Trish's Billirubin is down. The rest of the liver function enzymes are up, but not by enough to get worried. We still need to see this trend reverse and head down with no more of these scares. If this upward spike becomes a trend, Trish will likely be headed for another treatment at the very least.
As for how she feels. She is exhausted. Her skin is still peeling. Each day she does some more walking, but nothing like post chemo where she walks all the way from the apartment to IPOP. I wheel her over each morning.
Tomorrow is a new day and we'll see what it brings. My only hope is for lower numbers on the lier function. GO GATORS!
As for how she feels. She is exhausted. Her skin is still peeling. Each day she does some more walking, but nothing like post chemo where she walks all the way from the apartment to IPOP. I wheel her over each morning.
Tomorrow is a new day and we'll see what it brings. My only hope is for lower numbers on the lier function. GO GATORS!
Friday, September 14, 2007
Bet you're wondering what happened today...
Whew...I'm a walking zombie today. Last night we had IVs at 6p-12mid-and 6am -- I haveto take the IV ball out an hour or so before to get warmed to room temperature so as not to freeze Trish's veins out -- trust me she feels cold enough on her own without the help.
After bathing, we arrived at IPOP on time by 10:30 and Trish greeted Dr. Meade with vomitting. He said he would be by to see us later. I think the wheel chair ride made Trish a little nauceous this morning. She's been pretty good the rest of the day. She went walking with her sister and mom, while I ran to get tires on our car, new wiper blades and a space heater for Trish. Now maybe we can run her space heater and the air conditioner for me (cause now, we just shut the A/C off and I sweat.)
Despite Trish's platlets being at 18, they held off from giving her some. Her low number is set at 10, so they won't give her any till she drops even lower. Because she didn' t need platlets or anything else, it was a relatively quick trip. We did get some concerning news as her billirubin and the associated liver enzymes all went up a little -- click on the counts in the left column for a picture. One day does not a trend make and we'll see what tomorrow's labs bring. If the start to trend up -- this would be bad. So please, get out your favorite liver function lowering prayers and start them tonight. We'll keep you posted. Need to start Trish's 6pm IV, so look for more tomorrow.
After bathing, we arrived at IPOP on time by 10:30 and Trish greeted Dr. Meade with vomitting. He said he would be by to see us later. I think the wheel chair ride made Trish a little nauceous this morning. She's been pretty good the rest of the day. She went walking with her sister and mom, while I ran to get tires on our car, new wiper blades and a space heater for Trish. Now maybe we can run her space heater and the air conditioner for me (cause now, we just shut the A/C off and I sweat.)
Despite Trish's platlets being at 18, they held off from giving her some. Her low number is set at 10, so they won't give her any till she drops even lower. Because she didn' t need platlets or anything else, it was a relatively quick trip. We did get some concerning news as her billirubin and the associated liver enzymes all went up a little -- click on the counts in the left column for a picture. One day does not a trend make and we'll see what tomorrow's labs bring. If the start to trend up -- this would be bad. So please, get out your favorite liver function lowering prayers and start them tonight. We'll keep you posted. Need to start Trish's 6pm IV, so look for more tomorrow.
Thursday, September 13, 2007
OK, so that was not as easy as we had hoped....
Kind of wish they would have let Trish out on Wednesday and not done the bone marrow biopsy.....
She really looked and felt great before the biopsy. Today (Thursday), she just never really looked good, not like she looked before the biopsy.
She was still swollen around dinner time, by all the hydration the day of the biopsy. Just now does she look like she is returning to normal. She was a bit nauseous just as they were ready to release her and both she and her nurse were worried a doc would see it and keep her in.... Remember that 1/2 to 3/4's of the meds she is on have nausea as a side effect. Anway she seems ok now and is resting. Hopefully she will be at full strength tomorrow.
You may wonder why I am writing so late after such a busy day. I have to give Trish three IVs tonight -- one at 6pm, one at midnight and the last at 6am. Than our IPOP appointment is at 10:30am....
Whew...busy folks aren't we. Trish's IPOP appointment is bound to be long as she is almost certainly due to get platlets. Talk to you again after IPOP with the new numbers. Time to prep the IV.
She really looked and felt great before the biopsy. Today (Thursday), she just never really looked good, not like she looked before the biopsy.
She was still swollen around dinner time, by all the hydration the day of the biopsy. Just now does she look like she is returning to normal. She was a bit nauseous just as they were ready to release her and both she and her nurse were worried a doc would see it and keep her in.... Remember that 1/2 to 3/4's of the meds she is on have nausea as a side effect. Anway she seems ok now and is resting. Hopefully she will be at full strength tomorrow.
You may wonder why I am writing so late after such a busy day. I have to give Trish three IVs tonight -- one at 6pm, one at midnight and the last at 6am. Than our IPOP appointment is at 10:30am....
Whew...busy folks aren't we. Trish's IPOP appointment is bound to be long as she is almost certainly due to get platlets. Talk to you again after IPOP with the new numbers. Time to prep the IV.
Hit the road jack and don't you come back no more, no more...
Ok after my earlier Beatles reference I felt compelled to come back with some sort of musical title today....
Trish will be discharged sometime this afternoon! She is no longer Neutropenic (neutrophils and white cells above 1000 - as of this writing still waiting for the print out to update the charts on the counts page). This will hopefully begin a 3-4 week period of IPOP visits, which will hopefully lead to our coming home to Florida. No promises, things change fast in this world.
They also discontinued her growth factor shots today. That's good for two reasons: 1) Trish's legs were begin to have sever deep pain - they say this is from the over production of cells that the shots are designed to cause, since blood is produced in your bones as it over produces it hurts your bones as they fill up and 2) because I won't have to learn how to give her the shots. I am really good as vomit, diarrhea, I can inject in a central line and give IV Meds, and other issues, but blood and shots are not by specialty.
Trish's Mom and sister are up and I may let them stay with Trish tomorrow. We need to tires on the van for the drive home to Florida, so I'll probably run out to Costco so that, that task is behind me.
Hopefully, you will all get to read a bunch of very positive posts in the next couple of days. Trish should be in the hospital room till about 3 or 4pm if you want to call her there. TRhan we will be at the Hackerman House and on our cell phones.
I want to make a special shout out to everyone who rose to the occasion in the last 2-3 weeks. Trish really needed some special encouragement in the last few weeks and you all came through in spades. We know that there are also lots of you following along silently and in prayer. All of this support is appreciated and so critical, more than you will ever realize.
Trish will be discharged sometime this afternoon! She is no longer Neutropenic (neutrophils and white cells above 1000 - as of this writing still waiting for the print out to update the charts on the counts page). This will hopefully begin a 3-4 week period of IPOP visits, which will hopefully lead to our coming home to Florida. No promises, things change fast in this world.
They also discontinued her growth factor shots today. That's good for two reasons: 1) Trish's legs were begin to have sever deep pain - they say this is from the over production of cells that the shots are designed to cause, since blood is produced in your bones as it over produces it hurts your bones as they fill up and 2) because I won't have to learn how to give her the shots. I am really good as vomit, diarrhea, I can inject in a central line and give IV Meds, and other issues, but blood and shots are not by specialty.
Trish's Mom and sister are up and I may let them stay with Trish tomorrow. We need to tires on the van for the drive home to Florida, so I'll probably run out to Costco so that, that task is behind me.
Hopefully, you will all get to read a bunch of very positive posts in the next couple of days. Trish should be in the hospital room till about 3 or 4pm if you want to call her there. TRhan we will be at the Hackerman House and on our cell phones.
I want to make a special shout out to everyone who rose to the occasion in the last 2-3 weeks. Trish really needed some special encouragement in the last few weeks and you all came through in spades. We know that there are also lots of you following along silently and in prayer. All of this support is appreciated and so critical, more than you will ever realize.
Wednesday, September 12, 2007
Wednesday evening
Ok sorry to keep you in suspense. Trish did have the bone marrow biopsy today and all went fine. Her blood pressure was low during the procedure and they pumped up her fluids. The procedure took place at about 2pm and she is still sleeping now. They actually gave her about 1/2 the sedative that she normally gets, but she had a fetynal lollipop this morning for the pain from the neupogen. I think this combo is what is making her very sleepy.
Dr. Matsui - the new attending starting today - came back after the biopsy to talk to us about discharge. Trish was still sleepy. Bottom line, unless something weird happens over night - Trish can be discharged tomorrow.
Dr. Matsui - the new attending starting today - came back after the biopsy to talk to us about discharge. Trish was still sleepy. Bottom line, unless something weird happens over night - Trish can be discharged tomorrow.
Woke up, got out of bed, dragged a comb across my head....
Thought that snippet from the Beatles was appropriate for the start of today's early post....I woke up this morning, jolted out of bed by my favorite Beatles song... Here, There and Everywhere (Click the title for the lyrics). This song is my Trish ring tone on my cell phone. Like Pavlov's dog, I stop whatever I am doing - mid sentence, bite, whatever - when I hear that song and I answer my phone.
Trish called me about 7am this morning to tell me the fellow had just been by and that they were going to do her day 63 bone marrow biopsy today. Hmmm, we didn't know there was a day 63 bone marrow biopsy.... So she reminded him that she wouldn't do it without conscious sedation and to see if Dr. Griffiths was busy or available.
So this means she can't eat or drink today until after the procedure and she is likely to be very sleepy the rest of the day. It also means that she is a lot less likely to be discharged today. Just a little while ago her nurse MariCris came in and told us they may not do the procedure today. So we are waiting for rounds to figure out just what they will or won't do today.
Count-wise she is looking great -- liver down, immune system up! Her legs are starting to bother her and they said this was from the growth factor (neupogen) shots she is getting each day. MariCris said they stop the shots after her white or neutrophil (ANC) counts are above 1000 for three days -- she couldn't remember which. If it's white, the 3 days begin today. If it's ANC, hopefully they will be above 1000 tomorrow. Counts do fluctuate so small drops aren't that big a deal. We'll see how things go this afternoon, look for an update late afternoon, early evening.
Trish called me about 7am this morning to tell me the fellow had just been by and that they were going to do her day 63 bone marrow biopsy today. Hmmm, we didn't know there was a day 63 bone marrow biopsy.... So she reminded him that she wouldn't do it without conscious sedation and to see if Dr. Griffiths was busy or available.
So this means she can't eat or drink today until after the procedure and she is likely to be very sleepy the rest of the day. It also means that she is a lot less likely to be discharged today. Just a little while ago her nurse MariCris came in and told us they may not do the procedure today. So we are waiting for rounds to figure out just what they will or won't do today.
Count-wise she is looking great -- liver down, immune system up! Her legs are starting to bother her and they said this was from the growth factor (neupogen) shots she is getting each day. MariCris said they stop the shots after her white or neutrophil (ANC) counts are above 1000 for three days -- she couldn't remember which. If it's white, the 3 days begin today. If it's ANC, hopefully they will be above 1000 tomorrow. Counts do fluctuate so small drops aren't that big a deal. We'll see how things go this afternoon, look for an update late afternoon, early evening.
Tuesday, September 11, 2007
Sorry forgot I hadn't posted after rounds today....
I was so excited about the weight increase, that I forgot I hadn't posted after rounds today. Well, the liver levels continue to go down. Dr. Meade was quite happy to see Trish's billirubin break below 25 today. He made no promises (especially since he is going off service tonight and Trish will have a new attending on the floor tomorrow), but he thinks she could be released tomorrow (Wednesday) to IPOP. Assuming all goes well we will be in IPOP through at least the 26th of September, since this is the designated date of re-examination for the cytoxan study she is in. We just finished our longest lap round yet -- 5 laps (walking around the nurses' station. By Trish's post chemo standards this is not very much. Also, I still feel she can't walk alone, just a little wobbly, so while everything is looking up, it still as a bit to go.
Trish feels that the GvH tortures are almost worse than most of the tortures she has endured so far (6 rounds of chemo, hysterectomy, transplant, temporary blindness, hematoma, my cooking...). We are starting to get so close to the finish line we can smell it. This morning Trish was asking Dr. Meade about how often she would have to go to IPOP -- with an eye towards moving back to Aunt Mary's and then to home.
I have written in the past about this sub-culture we now belong to and how we all must learn our new roles through our own school of hard knocks. This weekend I was able to help a sister frustrated, in that she did not know what to do for her sister. I talked another new friend through the options of applying for disability for her significant other. As I had these conversations this weekend, I decided that there was something more I could do to help folks who are new to our situation. I decided I would write a book collecting all of the pieces of information we have discovered over the last two years. How to deal with insurance, how to deal with a large teaching hospital and be an advocate as well as a caregiver. If it helps one person, I will be happy. Between working and care giving, I will start writing. I plan on making it a free download and available in print from Cafe Press -- cause I am not looking to make money, just save some folks some time. One thing I did last night was create a web site for this effort -- nothing to really see there yet, but it is http://www.ohcrapwehavecancer.com . Notice the pronoun is we, not I. A diagnosis of cancer never affects just one person.
Trish feels that the GvH tortures are almost worse than most of the tortures she has endured so far (6 rounds of chemo, hysterectomy, transplant, temporary blindness, hematoma, my cooking...). We are starting to get so close to the finish line we can smell it. This morning Trish was asking Dr. Meade about how often she would have to go to IPOP -- with an eye towards moving back to Aunt Mary's and then to home.
I have written in the past about this sub-culture we now belong to and how we all must learn our new roles through our own school of hard knocks. This weekend I was able to help a sister frustrated, in that she did not know what to do for her sister. I talked another new friend through the options of applying for disability for her significant other. As I had these conversations this weekend, I decided that there was something more I could do to help folks who are new to our situation. I decided I would write a book collecting all of the pieces of information we have discovered over the last two years. How to deal with insurance, how to deal with a large teaching hospital and be an advocate as well as a caregiver. If it helps one person, I will be happy. Between working and care giving, I will start writing. I plan on making it a free download and available in print from Cafe Press -- cause I am not looking to make money, just save some folks some time. One thing I did last night was create a web site for this effort -- nothing to really see there yet, but it is http://www.ohcrapwehavecancer.com . Notice the pronoun is we, not I. A diagnosis of cancer never affects just one person.
Ding Ding Ding and in this corner
the "heavy weight" champion of the world, Trish DiComo.....
Trish weighed in just moments ago at 80.2 pounds! That's eighty point two, not 802. Ok, so that would still classify her as anorexic, at the high school prom, but for our girl coming back from a drop to 74 pounds, that's wonderful! Can you tell I am happy?! She was surprised. All sorts of reasons, that I won't go into, why this surprised us this morning. Of course the nurse just told us she did get some fluids and platlets last night, but that only adds about a kilo to the weight.
Rounds haven't been by yet, Trish is sleepy. I'll keep you posted after rounds.
Trish weighed in just moments ago at 80.2 pounds! That's eighty point two, not 802. Ok, so that would still classify her as anorexic, at the high school prom, but for our girl coming back from a drop to 74 pounds, that's wonderful! Can you tell I am happy?! She was surprised. All sorts of reasons, that I won't go into, why this surprised us this morning. Of course the nurse just told us she did get some fluids and platlets last night, but that only adds about a kilo to the weight.
Rounds haven't been by yet, Trish is sleepy. I'll keep you posted after rounds.
Monday, September 10, 2007
Monday early update
Trish didn't sleep well last night, but she is feeling ok. In rounds this morning, Dr. Meade said we are looking for a discharge this week, but wouldn't commit to a day. The liver counts continue to go down, but are still far from normal (I'll update the counts page later today). I asked him if this sluggish trend downward was normal. His response is we don't know....This is unchartered territory and he is just happy to see them going down. Had they not gone down, they would have started a new therapy today, but since they are going down, they will coninue to wait and see. He said that if the liver enzyme levels don't get close to normal, by next week, they will start a new treatment next week. The Billirubin count tends to move slowly and he doesn't expect it to reach normal for a while.
As the doctors left rounds, Trish's nurse came back in and informed us that she was positive for VRE -- this is a hospital nuisance. I forget what the E stands for, but the VR stands for Vancomyocin Resistant....Trish has been getting Vancimyocin to guard against infection fo about a week. They will change up her antibiotics to send the VRE infection away. The bad news for me is now I must gown, and glove up to be in the room. Long sweaty days ahead of me....
This is a time of continued prayer and stress. Waiting and hoping. Frustration and small victories.
As the doctors left rounds, Trish's nurse came back in and informed us that she was positive for VRE -- this is a hospital nuisance. I forget what the E stands for, but the VR stands for Vancomyocin Resistant....Trish has been getting Vancimyocin to guard against infection fo about a week. They will change up her antibiotics to send the VRE infection away. The bad news for me is now I must gown, and glove up to be in the room. Long sweaty days ahead of me....
This is a time of continued prayer and stress. Waiting and hoping. Frustration and small victories.
Sunday, September 9, 2007
Quick Sunday night update...
Thought I was going to write something more reflective tonight, but instead just a quick update.....
Trish is doing well. Liver counts continue to decrease, but if you check out the COUNTS page you'll see that they still have a ways to go. (Explanation of what normal is, is at the bottom of the page).
Trish appears to have a possible infection in her line, but more testing should either confirm or disprove that. She has been getting the antibiotics anyway so no worries. Her weight held steady, so that may be a good thing.
We'll see when Dr. Meade returns to rounds tomorrow. He took today off to babysit as his wife travelled.
More news tomorrow.....(Monday, probably after Noon).
Trish is doing well. Liver counts continue to decrease, but if you check out the COUNTS page you'll see that they still have a ways to go. (Explanation of what normal is, is at the bottom of the page).
Trish appears to have a possible infection in her line, but more testing should either confirm or disprove that. She has been getting the antibiotics anyway so no worries. Her weight held steady, so that may be a good thing.
We'll see when Dr. Meade returns to rounds tomorrow. He took today off to babysit as his wife travelled.
More news tomorrow.....(Monday, probably after Noon).
Saturday, September 8, 2007
Saturday....
Trish is lazy today. She's resting more than walking. That's had me concerned a couple of times during the day, but I think she is just tired of it all.
They have her on calorie counting and I think the plan is to release her on Tuesday if she shows she is eating and hopefully gaining weight. She lost a little of yesterday's gain. Overall, though she is doing well and the liver enzymes and billirubin counts are going down. Dr. Meade said he only reason she is still in now is her weight. I argued with him about that and I think Trish appreciated my sticking up for her. I explaned that she vomitted everyday after her transplant until she was discharged and the quickest way to put some weight on her was to discharge her. He said he would consider that. But I am guessing she is in till late Monday or Tuesday. Her nurse pratitioner is off on Tuesdays anyway, so it may be best to start IPOP on Wednesday.
I am adding liver enzyme counts to the counts page and of course her normal counts post GvH Cytoxan treatment. If you know anything about Billirubin or liver enzymes, you might be surprised that Trish is still here. They started coming down just in time.
So stay tuned, keep praying, thinking, writing, calling, encouraging, we could not run this gauntlet without you. Remember that, when you have another friend or relative faced with a similar diagnosis. The emotional, spiritual support are at times the most important part of the care plan. Never assume there are enough other people at play, or you might bother the person -- Bother them -- they will let youknow if the want to be left alone. Don't underestimate your power to be part of the cure!
They have her on calorie counting and I think the plan is to release her on Tuesday if she shows she is eating and hopefully gaining weight. She lost a little of yesterday's gain. Overall, though she is doing well and the liver enzymes and billirubin counts are going down. Dr. Meade said he only reason she is still in now is her weight. I argued with him about that and I think Trish appreciated my sticking up for her. I explaned that she vomitted everyday after her transplant until she was discharged and the quickest way to put some weight on her was to discharge her. He said he would consider that. But I am guessing she is in till late Monday or Tuesday. Her nurse pratitioner is off on Tuesdays anyway, so it may be best to start IPOP on Wednesday.
I am adding liver enzyme counts to the counts page and of course her normal counts post GvH Cytoxan treatment. If you know anything about Billirubin or liver enzymes, you might be surprised that Trish is still here. They started coming down just in time.
So stay tuned, keep praying, thinking, writing, calling, encouraging, we could not run this gauntlet without you. Remember that, when you have another friend or relative faced with a similar diagnosis. The emotional, spiritual support are at times the most important part of the care plan. Never assume there are enough other people at play, or you might bother the person -- Bother them -- they will let youknow if the want to be left alone. Don't underestimate your power to be part of the cure!
Friday, September 7, 2007
Friday...Not much to report...
Trish had a great birthday day. Her night did not bring much sleep though. They redrew her blood. They also gave her platlets in the wee hours of the night. Her blood counts are nearly at nadir. I think, I'll start asking the nurses for a printout starting tomorrow and start the new chart as soon as they start to come up.
I missed rounds this morning, but Trish tells me that Dr. Meade is still happy with the way her skin looks and that her liver counts still appear to be tranding down and that is good. I saw the fellow on duty last night before I left and he said that they are trending down, but that they are still pretty high. He thinks as long as the move downward, Dr. Meade will take a relaxed approach to considering other treatment options.
Trish is still resting and I am working. I have a feeling this will be a slow day, because of her last night. Yesterday, she walked fairly well. It was the first day since she has been readmitted that I felt I didn't have to have my arms around her o keep her from falling.
I think we are making the turn, but as with anything medical, you really can't relax. Just when you think things are good, they can change the other way. It's not that I am not optimistic. I am very optimistic, but I am also realistic....It is still too early to know what the next week will bring.
Oh one more good note. Trish hates me. I couldn't be happier.
That is she hates the fact that I have been following doctors orders and plying her with every possible calorie I can find or sneak into her water or whatever. The silver lining? She has gained weight. The last reported weight was 74.9 and drum roll please......My beautiful wife is up to a grand 77 pounds. Now that is a positive number, I just hope she will continue to grow. She is complaining of stomach aches, but I am hopeful that that is just because she is not accustomed to having food moving through the system.
Trish has also been calling herself the human "bug light", because her bald crown is bright yellow. The bright yellow is starting to fade, but is still very obvious in her eyes.
For a guy with not much to say today, I sure said a lot. Have a great weekend and as always, Thanks for all your support.
I missed rounds this morning, but Trish tells me that Dr. Meade is still happy with the way her skin looks and that her liver counts still appear to be tranding down and that is good. I saw the fellow on duty last night before I left and he said that they are trending down, but that they are still pretty high. He thinks as long as the move downward, Dr. Meade will take a relaxed approach to considering other treatment options.
Trish is still resting and I am working. I have a feeling this will be a slow day, because of her last night. Yesterday, she walked fairly well. It was the first day since she has been readmitted that I felt I didn't have to have my arms around her o keep her from falling.
I think we are making the turn, but as with anything medical, you really can't relax. Just when you think things are good, they can change the other way. It's not that I am not optimistic. I am very optimistic, but I am also realistic....It is still too early to know what the next week will bring.
Oh one more good note. Trish hates me. I couldn't be happier.
That is she hates the fact that I have been following doctors orders and plying her with every possible calorie I can find or sneak into her water or whatever. The silver lining? She has gained weight. The last reported weight was 74.9 and drum roll please......My beautiful wife is up to a grand 77 pounds. Now that is a positive number, I just hope she will continue to grow. She is complaining of stomach aches, but I am hopeful that that is just because she is not accustomed to having food moving through the system.
Trish has also been calling herself the human "bug light", because her bald crown is bright yellow. The bright yellow is starting to fade, but is still very obvious in her eyes.
For a guy with not much to say today, I sure said a lot. Have a great weekend and as always, Thanks for all your support.
Thursday, September 6, 2007
Sound essay
Ok, I promised a sound essay and recorded these sounds a few days ago. Click the sound box to play the sounds, the "High-Brow NPR" commentary is written here and not in the audio clip. It's up to you whether you read the comments first or listen to the sound first......
The Weinberg garage. Whether Trish is an outpatient or an inpatient we park in the Weinberg garage. It's a 3 level parking garage in the basement of the Weinberg building (the cancer center). When we first started out and they still had the Broadway garage, it was pretty easy to get a space in the garage. When they demolished the Broadway garage to start the two new buildings, parking in Weinberg became a little bit harder and they handed out "Weinberg Appointment" signs. We have one displayed in our van at all times. The sign allows you into the garage to find a space, even when the garage is at or near capacity and they are sending people to the other garages.
So the sounds.... The first sound you'll hear is me pulling up to the ticket machine. As you pull up the ticket machine starts talking. During Trish's first round, I started to play a game with the machine to add some zest to my mornings. My goal was to grab my ticket and stop the talking before he started. The first few times, I would stop it after a few words. Eventually, I had perfected my technique and I can now grab a ticket and go before the machine utters its first word. I didn't play the game this time, so I could catch the whole recording for you. You can imagine how annoying this can become for 204 days or more.
The next sound you'll hear are the screeches of my wheels making the turns as I wind my way down the garage. I think the screeching is because I probably need new tires on the front wheels. I'll probably do that before we take the car home. I always park on L3 -- it's the lowest level and easiest to park on. Also, after a long day in the hospital, I don't have to remember where I parked today.
The last sound byte, is of the highly annoying elevator waiting area voice. This short loop usually repeats 3 to 10 times before the elevator shows up to take you up to the lobby. It is enough to drive you insane. I have thought about disconnecting the speakers.
This will probably be the first and last audio essay. While there are all sorts of other interesing sounds around here, they may be difficult to get without a HIPPA violation. Some of the critical patients on this floor have really cool machines that blow bugles and other cool sounds to alert the nurses.
The Weinberg garage. Whether Trish is an outpatient or an inpatient we park in the Weinberg garage. It's a 3 level parking garage in the basement of the Weinberg building (the cancer center). When we first started out and they still had the Broadway garage, it was pretty easy to get a space in the garage. When they demolished the Broadway garage to start the two new buildings, parking in Weinberg became a little bit harder and they handed out "Weinberg Appointment" signs. We have one displayed in our van at all times. The sign allows you into the garage to find a space, even when the garage is at or near capacity and they are sending people to the other garages.
So the sounds.... The first sound you'll hear is me pulling up to the ticket machine. As you pull up the ticket machine starts talking. During Trish's first round, I started to play a game with the machine to add some zest to my mornings. My goal was to grab my ticket and stop the talking before he started. The first few times, I would stop it after a few words. Eventually, I had perfected my technique and I can now grab a ticket and go before the machine utters its first word. I didn't play the game this time, so I could catch the whole recording for you. You can imagine how annoying this can become for 204 days or more.
The next sound you'll hear are the screeches of my wheels making the turns as I wind my way down the garage. I think the screeching is because I probably need new tires on the front wheels. I'll probably do that before we take the car home. I always park on L3 -- it's the lowest level and easiest to park on. Also, after a long day in the hospital, I don't have to remember where I parked today.
The last sound byte, is of the highly annoying elevator waiting area voice. This short loop usually repeats 3 to 10 times before the elevator shows up to take you up to the lobby. It is enough to drive you insane. I have thought about disconnecting the speakers.
This will probably be the first and last audio essay. While there are all sorts of other interesing sounds around here, they may be difficult to get without a HIPPA violation. Some of the critical patients on this floor have really cool machines that blow bugles and other cool sounds to alert the nurses.
Happy Birthday Update
Trish's first present for her birthday was a continuing drop in her liver function enzymes today. Dr. Meade says that is great news, but two days does not a trend make....if it continues through Monday he will be very happy.
Trish is scheduled to get her first dose of growth factor today to help her counts come back faster.
She was also scolded by the doctors today. Her weight is down to 74.9 pounds (which is actually up from the day before - so maybe we are starting a good trend there too). Last night I bought her a bottle of green tabasco to spike her foods. I have rice and beans for her and as a birthday treat we ordered a Marburg meal. Marburg is the exclusive wing of the hospital where all the rich folks stay. They have a private kitchen staff and there food is supposed to be better. Dr. Meade says he doesn't know that it will be better, but he is sure it will be more expensive.....
After we have our Marburg lunch, I will head out to pick up a Carvel ice cream cake. Everyone (here and at home) is suggesting that Trish eat the whole cake herself and I only wish she would. I promised her because of the Marburg meal and cake and stuff, I wouldn't ply her with Carnation Instant breakfasts between meals like in previous days.
I have been spiking her Carnation instant breakfasts with whole milk, Health shakes (300 calories), and Scandi Shakes (600 calories)....Carnation Instant Breakfasts only have about 200 calories on their own. She usually drinks about half of it twice a day.
Trish is not quite the lap queen this time. We try to walk three times a day, but now she is usually only able to make it around the nurses station 2-3 times. She used to walk on her own 20 laps at a time. Now I walk closely behind her either holding her or walking with my arm nervously behind her to catch her if she gets to weak. While she still is the hygiene queen, she is taking sponge baths instead of showers every morning. Her skin is still pretty sore and most done peeling, but some areas dry out and flake off. After the sponge bath we slather on skin creams to keep her skin moist. We usually sponge bath after the rounds, but this morning we did it before rounds and I gave Trish her cat pants -- I figured Dr. Meade would get a kick out of it after yesterdays comments. But Trish forgot to tease him about it and he didn't look at her skin today. So, no reward for my efforts on that front.
Trish remains in fairly good spirits, thanks to your renewed efforts, please continue them. While she is expecting a lot of calls today, please don't hesitate to be one of them.
She hasn't gotten out of bed yet and we usually would have tried a walk by now. Her Hematacrit (red cell level) is around 20 today - which is very low and conributing to her being very tired. We are waiting till after she gets her red cells to walk today. They should be transfusing her soon.
The hospital just brought her a birthday cake! That would surely help her if she ate cake multiple times today.
Trish is scheduled to get her first dose of growth factor today to help her counts come back faster.
She was also scolded by the doctors today. Her weight is down to 74.9 pounds (which is actually up from the day before - so maybe we are starting a good trend there too). Last night I bought her a bottle of green tabasco to spike her foods. I have rice and beans for her and as a birthday treat we ordered a Marburg meal. Marburg is the exclusive wing of the hospital where all the rich folks stay. They have a private kitchen staff and there food is supposed to be better. Dr. Meade says he doesn't know that it will be better, but he is sure it will be more expensive.....
After we have our Marburg lunch, I will head out to pick up a Carvel ice cream cake. Everyone (here and at home) is suggesting that Trish eat the whole cake herself and I only wish she would. I promised her because of the Marburg meal and cake and stuff, I wouldn't ply her with Carnation Instant breakfasts between meals like in previous days.
I have been spiking her Carnation instant breakfasts with whole milk, Health shakes (300 calories), and Scandi Shakes (600 calories)....Carnation Instant Breakfasts only have about 200 calories on their own. She usually drinks about half of it twice a day.
Trish is not quite the lap queen this time. We try to walk three times a day, but now she is usually only able to make it around the nurses station 2-3 times. She used to walk on her own 20 laps at a time. Now I walk closely behind her either holding her or walking with my arm nervously behind her to catch her if she gets to weak. While she still is the hygiene queen, she is taking sponge baths instead of showers every morning. Her skin is still pretty sore and most done peeling, but some areas dry out and flake off. After the sponge bath we slather on skin creams to keep her skin moist. We usually sponge bath after the rounds, but this morning we did it before rounds and I gave Trish her cat pants -- I figured Dr. Meade would get a kick out of it after yesterdays comments. But Trish forgot to tease him about it and he didn't look at her skin today. So, no reward for my efforts on that front.
Trish remains in fairly good spirits, thanks to your renewed efforts, please continue them. While she is expecting a lot of calls today, please don't hesitate to be one of them.
She hasn't gotten out of bed yet and we usually would have tried a walk by now. Her Hematacrit (red cell level) is around 20 today - which is very low and conributing to her being very tired. We are waiting till after she gets her red cells to walk today. They should be transfusing her soon.
The hospital just brought her a birthday cake! That would surely help her if she ate cake multiple times today.
Wednesday, September 5, 2007
Prayers answered, but not yet time for the happy dance
Today is the day the Lord has made, Let us rejoice and be glad in it!
Well, far too early to be excited or celebrate or know that it will continue, but today for the first time in over two weeks, Trish's liver function shows signs of going down. Dr. Meade is happy. I am happy. Trish is happy. But it is way too early to be excited or to stop praying for a liver enzyme miracle.
Trish's immune system is just a few days shy of being at its nadir (lowest point). Remember that the real test will be what happens when her counts return and how her new immune system treats her skin and liver when it returns. So we still need the IPU (Intensive Prayer Unit) at full force.
In other news, completely unsolicited from me and really out of no where. Dr. Meade brought up the subject of cats. He said hat Trish shouldnt be around any cats when she is home and still on Imunno suppressants. He said some doctors would say just no litter, he says NO WAY! Now what's funny about this is my Mom met our neighbor in the store yesterday and he asked what we were planning on doing with the cat when Trish made it home.....Wow, almost seems like I paid Dr. Meade to bring this up, but I did not and he confirmed that for Trish. Looks like Minnie will be finding a new home at Grandma's (Trish's Mom) a few weeks before we head home.
Stay tuned....and keep up the IPU efforts and the good cheer efforts. A descending liver count was the best birthday news Trish could get, now it just has to finish going down and stay down.
Well, far too early to be excited or celebrate or know that it will continue, but today for the first time in over two weeks, Trish's liver function shows signs of going down. Dr. Meade is happy. I am happy. Trish is happy. But it is way too early to be excited or to stop praying for a liver enzyme miracle.
Trish's immune system is just a few days shy of being at its nadir (lowest point). Remember that the real test will be what happens when her counts return and how her new immune system treats her skin and liver when it returns. So we still need the IPU (Intensive Prayer Unit) at full force.
In other news, completely unsolicited from me and really out of no where. Dr. Meade brought up the subject of cats. He said hat Trish shouldnt be around any cats when she is home and still on Imunno suppressants. He said some doctors would say just no litter, he says NO WAY! Now what's funny about this is my Mom met our neighbor in the store yesterday and he asked what we were planning on doing with the cat when Trish made it home.....Wow, almost seems like I paid Dr. Meade to bring this up, but I did not and he confirmed that for Trish. Looks like Minnie will be finding a new home at Grandma's (Trish's Mom) a few weeks before we head home.
Stay tuned....and keep up the IPU efforts and the good cheer efforts. A descending liver count was the best birthday news Trish could get, now it just has to finish going down and stay down.
Tuesday, September 4, 2007
Feeling better and climbing numbers
The good news today is that Trish sounds and feels good today, despite also feeling weak and tired. The bad news is that her liver function continues to go in the wrong direction (up), as does her weight (down).
Dr. Meade is not worried yet, just carefully concerned. The cytoxan therapy takes time to work, her counts have to be reduced and come back. In fact the study calls for Trish to be re-evaluated at day 28 (which is September 26, I believe).
Dr. Meade says that if they don't see her liver numbers go down, by the start of next week, they will agressively begin a new therapy and not wait for Day 28. Folks, it's time for some serious praying. Let's pray those liver function numbers down.
Thanks to everyone for responding to my request for good cheer. Trish is smiling a lot more easier despite the conditions, please keep up these efforts too. Don't be afraid to call her and chat about anything, she just needs to hear from friends and family and remember what she is fighting for. Take good care of yourselves and thanks for everything.
Dr. Meade is not worried yet, just carefully concerned. The cytoxan therapy takes time to work, her counts have to be reduced and come back. In fact the study calls for Trish to be re-evaluated at day 28 (which is September 26, I believe).
Dr. Meade says that if they don't see her liver numbers go down, by the start of next week, they will agressively begin a new therapy and not wait for Day 28. Folks, it's time for some serious praying. Let's pray those liver function numbers down.
Thanks to everyone for responding to my request for good cheer. Trish is smiling a lot more easier despite the conditions, please keep up these efforts too. Don't be afraid to call her and chat about anything, she just needs to hear from friends and family and remember what she is fighting for. Take good care of yourselves and thanks for everything.
Monday, September 3, 2007
What a night.....
Somedays, I should stay in bed longer than others. Today Andy woke me up at 8am to tell me his car died last night on the way back from seeing a movie with friends. By the way Andy and his friends have panned "Balls of Fury", so save your money if you had any thoughts of seeing it. His car died on the way into our neighborhood. Luckily folks at the house just inside the neighborhood were still out (at midnight) and had a big truck and were willing to pull him a few blocks to our house. So the car sits in our grass waiting for a tow truck tomorrow. Sounds like a timing belt to me -- it just died as he was driving and wouldn't re-start. He's still wearing a sling for about another week.
On the Trish front, one of her blood cultures came back positive for an infection and they started anti-biotics last night. Not sure what the infection is yet, that may take a few days, but they believe they have the right antibiotic set hanging to knock it out.
More disconcerting is the skin tears she received last night. In an attempt to determine if the infection was in her Hickman line or in her, they take cultures from her line and from a needle stick elswhere on her arms. Because of Trish's anorexic weight, she's a hard stick and they tried both her arms last night. She had tape and gauze covering both sticks and she asked if they could be removed a few hours later. That was a mistake. She now has skin tears on both arms and they are gauze wrapped (no tape). As a result no shower allowed this morning. I helped her take a sponge bath in bed.
Dr. Meade was impressed with her run to church yesterday, but expected the trip back was slower and we confirmed that for him this morning. He joked with Trish, that there is a Mass at the Basilica today and if she walks to it and back. He will release her today. Based on his comments and Trish's general health -- we are guessing that she will be in all week this week. Her white count is on the way down and Dr. Meade likes the way her skin looks and expects her liver to improve as well this week.
My goal is to feed Trish between meals as much as possible. She needs to eat and put some pounds on. Enjoy your holiday!
On the Trish front, one of her blood cultures came back positive for an infection and they started anti-biotics last night. Not sure what the infection is yet, that may take a few days, but they believe they have the right antibiotic set hanging to knock it out.
More disconcerting is the skin tears she received last night. In an attempt to determine if the infection was in her Hickman line or in her, they take cultures from her line and from a needle stick elswhere on her arms. Because of Trish's anorexic weight, she's a hard stick and they tried both her arms last night. She had tape and gauze covering both sticks and she asked if they could be removed a few hours later. That was a mistake. She now has skin tears on both arms and they are gauze wrapped (no tape). As a result no shower allowed this morning. I helped her take a sponge bath in bed.
Dr. Meade was impressed with her run to church yesterday, but expected the trip back was slower and we confirmed that for him this morning. He joked with Trish, that there is a Mass at the Basilica today and if she walks to it and back. He will release her today. Based on his comments and Trish's general health -- we are guessing that she will be in all week this week. Her white count is on the way down and Dr. Meade likes the way her skin looks and expects her liver to improve as well this week.
My goal is to feed Trish between meals as much as possible. She needs to eat and put some pounds on. Enjoy your holiday!
Sunday, September 2, 2007
My incredibile shrinking wife
Trish is now down to 76 pounds an all time low. Yet, she looks pretty good today. Dr. Meade is always impressed with her smile. No matter how good or bad she feels, she always smiles big and makes everyone feel better.
If you haven't seen Trish's smile, you really need to. It is infectious (in a good way).
We are waiting for a CT scan today to make sure Trish has no infections that are masked by the steroids. I wanted to go out shopping, but will wait till after the CT. It is Sunday and that means a long trip to the main hospital radiology department. People in the main hospital sometimes don't treat the oncology patients as oncology patients -- little things, so I like to be there. On weekdays, they would take her down to the second floor of Weinberg and I'm ok if she goes there alone (with the hospital transport folks).
Trish's lunch arrived and she wasn't interested in the Hopkins chicken, so I made her a bowl of buttered rice. I found some Uncle Ben's rice that is microwaveable. We split the bag and it was pretty good. I was going to ply her with some Carnation Instant Breakfast too, but since she has to drink some contrast (strawberry koolaid tasting stuff) I decided to wait and add that to her dinner. I need to fatten her up so she can get out.
Hope you are enjoying your long weekend.
If you haven't seen Trish's smile, you really need to. It is infectious (in a good way).
We are waiting for a CT scan today to make sure Trish has no infections that are masked by the steroids. I wanted to go out shopping, but will wait till after the CT. It is Sunday and that means a long trip to the main hospital radiology department. People in the main hospital sometimes don't treat the oncology patients as oncology patients -- little things, so I like to be there. On weekdays, they would take her down to the second floor of Weinberg and I'm ok if she goes there alone (with the hospital transport folks).
Trish's lunch arrived and she wasn't interested in the Hopkins chicken, so I made her a bowl of buttered rice. I found some Uncle Ben's rice that is microwaveable. We split the bag and it was pretty good. I was going to ply her with some Carnation Instant Breakfast too, but since she has to drink some contrast (strawberry koolaid tasting stuff) I decided to wait and add that to her dinner. I need to fatten her up so she can get out.
Hope you are enjoying your long weekend.
Saturday, September 1, 2007
204, 52, 698 time for another edition of guess the numbers....
Hmmm... do you know what those numbers are? Better yet, can you tell me what is significant about today? September 1st, 2007?
Well, first a word from our sponsor.... Trish is sounding and looking much better today. So far, breakfast and all pills have stayed down. Not sure where her counts are, but remember the chemo is designed to bring her blood counts down. I'll start tracking the counts on the way up soon. The doctors haven't rounded yet, but we'll see what they say. Today could be the first good day for Trish. Stay tuned.
Now back to our program....It has been 204 days since we have been here to treat Trish's relapse, 52 days since the transplant and 698 days since the first diagnosis in October 2005. Her first treatment lasted just over 150 days.
But why is today so significant? The first of September. Today marks the day that we have officially been in Maryland every month of the year. Trish's first round ran from October through February. This round has run from February through at least September and possibly as late as November.
Rounds are almost here....Possible update later today...
Ok the docs just left. They are happy with Trish's liver enzyme count reduction, billirubin is still high, but that takes a while to respond. The study calls for a recheck on Day 28 after the cytoxan dose completes to confirm that the GvH is under control- which would be on September 26. Because of the holiday weekend, Dr. Meade would rather leave Trish in the hospital, because if they let her out and she needs to come back, it is more difficult. So she is scheduled to be discharged on Monday if she continues to improve.
Well, first a word from our sponsor.... Trish is sounding and looking much better today. So far, breakfast and all pills have stayed down. Not sure where her counts are, but remember the chemo is designed to bring her blood counts down. I'll start tracking the counts on the way up soon. The doctors haven't rounded yet, but we'll see what they say. Today could be the first good day for Trish. Stay tuned.
Now back to our program....It has been 204 days since we have been here to treat Trish's relapse, 52 days since the transplant and 698 days since the first diagnosis in October 2005. Her first treatment lasted just over 150 days.
But why is today so significant? The first of September. Today marks the day that we have officially been in Maryland every month of the year. Trish's first round ran from October through February. This round has run from February through at least September and possibly as late as November.
Rounds are almost here....Possible update later today...
Ok the docs just left. They are happy with Trish's liver enzyme count reduction, billirubin is still high, but that takes a while to respond. The study calls for a recheck on Day 28 after the cytoxan dose completes to confirm that the GvH is under control- which would be on September 26. Because of the holiday weekend, Dr. Meade would rather leave Trish in the hospital, because if they let her out and she needs to come back, it is more difficult. So she is scheduled to be discharged on Monday if she continues to improve.
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