the bit about the treatment possibly starting again in a few days is inaccurate. dr. gollob's assistant was in to see ellen this morning and mentioned it, only briefly, as a possibility. i'm sure that i read a little too much into it.
dr. gollob himself came in later and was pleased with ellen's mental progress. we are still in a holding pattern, so to speak, because we still need to see progress in her liver and kidney functions. the best case would be that everything improves and she is able to start the second course in 2 weeks.
a couple more notes:
-because of ellen's low white blood cell count, she is not allowed to have flowers in the room. she loves and appreciates what has been sent already but asks that you not send anymore.
-if you are sending another package, the address at the apartment will work fine. someone is always stopping there to pick up cards and packages... she may even be going back there in a day or so.
Tuesday, July 31, 2007
fighting chance
things are not progressing exactly as we expected. dr. gollob was in yesterday to update us as to ellen's continuing condition and said that the chemo is not having the desired effect. the combination of ellen's persistent nausea, the reaccumulation of fluid in her abdomen, the lowered kidney and liver function and low white blood cell count all indicate that the cancer may be spreading in spite of the intense treatment.
her condition is as serious as it can be.
rather than dwell on the many negatives, though, we are focusing on the possibility that she is able to rebound in the next day or so. she needs to gain energy again so that she will be ready for another round of treatment which they may start as early as thursday or friday.
at the moment they have completely discontinued her meds... all of them. she is back to the ellen we all know and love, lucid, hungry and a little bossy. she asked for a muffin to eat. it was too dry so we went with a krispy kreme glazed washed down with some gatorade. she is totally ready for the upcoming days and is ready to prove that she can rally and be ready for the next week of treatment. she is a fighter, as if we all didn't already know that.
i battled back and forth throughout the night deciding whether to write a post or not. this morning she asked me to. she wanted everyone to know what she is going through and is more than willing to fight. she needs all of your thoughts and prayers more than ever.
her condition is as serious as it can be.
rather than dwell on the many negatives, though, we are focusing on the possibility that she is able to rebound in the next day or so. she needs to gain energy again so that she will be ready for another round of treatment which they may start as early as thursday or friday.
at the moment they have completely discontinued her meds... all of them. she is back to the ellen we all know and love, lucid, hungry and a little bossy. she asked for a muffin to eat. it was too dry so we went with a krispy kreme glazed washed down with some gatorade. she is totally ready for the upcoming days and is ready to prove that she can rally and be ready for the next week of treatment. she is a fighter, as if we all didn't already know that.
i battled back and forth throughout the night deciding whether to write a post or not. this morning she asked me to. she wanted everyone to know what she is going through and is more than willing to fight. she needs all of your thoughts and prayers more than ever.
Monday, July 30, 2007
the first week is over
no matter what you think you know about the side effects of chemo, unless you have seen it first hand or been through it yourself, you have no idea. i have paid close attention to what all of the doctors told us to expect. i have done my own research, reading almost everything i can find. i thought i would be prepared for what she would go through after her first round of treatment was over... not even close.
the past 36 hours have been the very definition of misery for ellen. she goes through spells of extreme overheating, then chills. she has been vomiting consistently since about 4 pm yesterday. she hasn't eaten in a week so, without being too graphic, there isn't much coming up except bile. the act is excruciating to watch and i can't imagine what it is like to experience first hand.
she has been restless to the point that neither of us have slept for 2 days. the doctors are hesitant to sedate her anymore, but she has been so confused, they are giving her an mri tonight to rule out a spread to the brain.
the fluid draining from her lung has slowed considerably but the fluid in her abdomen has slowly reaccumulated. they are considering a semi-permanent tap so that she will be able to relieve the pressure on her own. the chest tube should come out tomorrow.
the more i think about this and reread it, the more i realize that there are no words that come close to describing what she is going through.
please keep thinking about her praying for her.
the past 36 hours have been the very definition of misery for ellen. she goes through spells of extreme overheating, then chills. she has been vomiting consistently since about 4 pm yesterday. she hasn't eaten in a week so, without being too graphic, there isn't much coming up except bile. the act is excruciating to watch and i can't imagine what it is like to experience first hand.
she has been restless to the point that neither of us have slept for 2 days. the doctors are hesitant to sedate her anymore, but she has been so confused, they are giving her an mri tonight to rule out a spread to the brain.
the fluid draining from her lung has slowed considerably but the fluid in her abdomen has slowly reaccumulated. they are considering a semi-permanent tap so that she will be able to relieve the pressure on her own. the chest tube should come out tomorrow.
the more i think about this and reread it, the more i realize that there are no words that come close to describing what she is going through.
please keep thinking about her praying for her.
Saturday, July 28, 2007
four liters
at first the doctors told us that her stomach seemed full and bloated because all of the fluid on her lung was pushing her diaphragm down. that made sense at first but after several days of fluid draining off her lung i was no longer satisfied with that explanation. after some prodding from myself, the doctors decided to do an ultrasound of her stomach. sure enough, they found a large pocket of fluid.
four liters later, she is feeling better. well, she is probably feeling fine from the extremely potent drugs they gave her prior to the procedure, but she was able to crack a smile and reach down to feel after i told her what they did.
that was the action for the day. she continues to sleep 90% of the time. when she does wake up for a little bit she asks about her blog. i start reading and within a few seconds she is back asleep again.
sleep is good though.
four liters later, she is feeling better. well, she is probably feeling fine from the extremely potent drugs they gave her prior to the procedure, but she was able to crack a smile and reach down to feel after i told her what they did.
that was the action for the day. she continues to sleep 90% of the time. when she does wake up for a little bit she asks about her blog. i start reading and within a few seconds she is back asleep again.
sleep is good though.
Friday, July 27, 2007
much needed rest
today was mostly uneventful, not to imply that it was easy, however. the discomfort from the chemotherapy has increased as the pain from the chest tube has decreased. the barrage of pills and fluids have finally slowed ellen down. she sleeps most of the day trying to keep from getting sick and she is not eating much.
we met with a few doctors today including dr. gollob and everyone said that she is doing well. the fluid from her chest has slowed considerably and they think that the tube may come out on sunday or monday.
todd arrived late last night and was here first thing this morning. even though she has a very difficult time mustering any kind of conversation, she loves the company. of course she wants to make sure that everyone is entertained and says, repeatedly, "let me nap for 20 more minutes, then i'll be able to talk." the chemo has other plans.
we met with a few doctors today including dr. gollob and everyone said that she is doing well. the fluid from her chest has slowed considerably and they think that the tube may come out on sunday or monday.
todd arrived late last night and was here first thing this morning. even though she has a very difficult time mustering any kind of conversation, she loves the company. of course she wants to make sure that everyone is entertained and says, repeatedly, "let me nap for 20 more minutes, then i'll be able to talk." the chemo has other plans.
contact info
perhaps i should have mentioned this contact information earlier.
apartment:
206 n. duke st. apt. 215
durham, nc 27701
hospital:
duke university medical center
room 9122
ryan's cell number:
330.417.0968
ellen's cell phone (which isn't checked as often but she likes seeing that she has messages nonetheless):
330.704.7172
apartment:
206 n. duke st. apt. 215
durham, nc 27701
hospital:
duke university medical center
room 9122
ryan's cell number:
330.417.0968
ellen's cell phone (which isn't checked as often but she likes seeing that she has messages nonetheless):
330.704.7172
Thursday, July 26, 2007
catching up on rest
ellen slept soundly for the second night in a row - a welcomed change from the nights spent trying to catch her breath.
her pain from the chest tube has subsided, for the most part, but the tube itself is causing other problems. due to a small leak she has to have the dressing changed every few hours. other than being quite a production, with her numerous tubes, she handles it well enough and it actually allows gravity to help coax the fluid out. the surgeon who performed the procedure looked at it and told us that it was fine and it wasn't cause for concern. he might think otherwise if he had to lay in a pool of fluid from his chest, but i digress.
one of dr. gollob's pa's (physician's assistant) came by today to talk to us about ellen's red cell count. i'm not sure what the unit of measure is but a healthy number is in the 40's. ellen's is about 32 and if it drops below 30 she will need a blood transfusion. the pa assured us that this is not out of the ordinary and won't cause her any discomfort.
i'm sure that i will say this many, many times but thanks to everyone for the cards, flowers, e-mails, gifts, blog posts and calls, all of which keep her going. there is a reason why we try to surround ourselves with good people... when you need them, they are there.
her pain from the chest tube has subsided, for the most part, but the tube itself is causing other problems. due to a small leak she has to have the dressing changed every few hours. other than being quite a production, with her numerous tubes, she handles it well enough and it actually allows gravity to help coax the fluid out. the surgeon who performed the procedure looked at it and told us that it was fine and it wasn't cause for concern. he might think otherwise if he had to lay in a pool of fluid from his chest, but i digress.
one of dr. gollob's pa's (physician's assistant) came by today to talk to us about ellen's red cell count. i'm not sure what the unit of measure is but a healthy number is in the 40's. ellen's is about 32 and if it drops below 30 she will need a blood transfusion. the pa assured us that this is not out of the ordinary and won't cause her any discomfort.
i'm sure that i will say this many, many times but thanks to everyone for the cards, flowers, e-mails, gifts, blog posts and calls, all of which keep her going. there is a reason why we try to surround ourselves with good people... when you need them, they are there.
Wednesday, July 25, 2007
first day of treatment
ellen started her treatment today. all things considered, she is in very good spirits and has been awake most of the day talking to the battery of doctors that visit her. she has been given all of the various drugs for the day and will be on a 24 hour drip of interleukin.
tiffany, ellen's cousin, inquired about the drugs that she will be on. they are as follows for anyone else who may be interested:
-24 our drip of interleukin
-interferon
-temodar in pill form
-cisplatin
-vinblastin
as well as some maintenance drugs like:
-tylenol
-zofran and phenergan for nausea
-24 hour drip of saline
she met with the physical therapist and attempted to get out of bed for a little bit. her spinning head dictated otherwise. currently she is speaking with the nutritionist about getting something better than fried chicken, fried potatoes and chocolate cake. while this may sound delicious (in a hospital or not) ellen is trying to eat healthy so she was given an alternative menu.
not that anybody had any doubt but they are taking extremely good care of her here.
p.s.
angie visited last night, surprising ellen with a beautiful scrap book of all her girlfriends. she, of course, loved it and had a good laugh at all of the old pictures. thank you very much, angie, and to everyone else who helped in any way with that.
tiffany, ellen's cousin, inquired about the drugs that she will be on. they are as follows for anyone else who may be interested:
-24 our drip of interleukin
-interferon
-temodar in pill form
-cisplatin
-vinblastin
as well as some maintenance drugs like:
-tylenol
-zofran and phenergan for nausea
-24 hour drip of saline
she met with the physical therapist and attempted to get out of bed for a little bit. her spinning head dictated otherwise. currently she is speaking with the nutritionist about getting something better than fried chicken, fried potatoes and chocolate cake. while this may sound delicious (in a hospital or not) ellen is trying to eat healthy so she was given an alternative menu.
not that anybody had any doubt but they are taking extremely good care of her here.
p.s.
angie visited last night, surprising ellen with a beautiful scrap book of all her girlfriends. she, of course, loved it and had a good laugh at all of the old pictures. thank you very much, angie, and to everyone else who helped in any way with that.
Tuesday, July 24, 2007
now they're the changing hurdles
i don't really know if this qualifies as 'good luck' as much as 'different luck'.
ellen had her procedure to remove the fluid from around her right lung today. they removed two and a half liters... that's another two and a half liters.
the chest tube that she has in place now travels between her ribs and is constantly draining, not to mention that it is brutally painful for her. the tube's diameter is similar to that of a garden hose and is temporarily sutured to her side.
after she came out we were greeted by one of dr. gollob's colleagues, dr. dunphy. he was very informative having a background in thoracics. he relayed to us from the doctor that did the procedure that ellen had more nodules on her lungs than they first thought. not that the cancer is 'spreading', necessarily, but that there are more nodules in a certain space than the ct scan first disclosed.
this prompted dr. gollob to change his plan of attack. he wants to move forward with a treatment that has more potential for initial response. it is exactly the first phase of our other option, the 'chemo-switch'. this is not the experimental treatment, however, as it won't include the second phase (the experimental portion), only a repeat of the first. in addition to this change, ellen is scheduled to start tomorrow, the 25th. she is now back on the pace that we had originally planned for. this is pleasing to ellen as she was very apprehensive to wait around a week for treatment to begin.
we are all very excited for the change in plans. we were told from the start that we couldn't really make a 'wrong' choice when deciding between treatment plans. now ellen's body has adjusted and made the decision for her.
ellen had her procedure to remove the fluid from around her right lung today. they removed two and a half liters... that's another two and a half liters.
the chest tube that she has in place now travels between her ribs and is constantly draining, not to mention that it is brutally painful for her. the tube's diameter is similar to that of a garden hose and is temporarily sutured to her side.
after she came out we were greeted by one of dr. gollob's colleagues, dr. dunphy. he was very informative having a background in thoracics. he relayed to us from the doctor that did the procedure that ellen had more nodules on her lungs than they first thought. not that the cancer is 'spreading', necessarily, but that there are more nodules in a certain space than the ct scan first disclosed.
this prompted dr. gollob to change his plan of attack. he wants to move forward with a treatment that has more potential for initial response. it is exactly the first phase of our other option, the 'chemo-switch'. this is not the experimental treatment, however, as it won't include the second phase (the experimental portion), only a repeat of the first. in addition to this change, ellen is scheduled to start tomorrow, the 25th. she is now back on the pace that we had originally planned for. this is pleasing to ellen as she was very apprehensive to wait around a week for treatment to begin.
we are all very excited for the change in plans. we were told from the start that we couldn't really make a 'wrong' choice when deciding between treatment plans. now ellen's body has adjusted and made the decision for her.
Monday, July 23, 2007
hurdles on top of hurdles on top of hurdles...
we were up early this morning but were slightly more fortunate and made it to 4 am this time. ellen was unable to breath easily and we would later find out that the fluid on her right lung had reaccumulated. we went through the same process with the e.r. and they admitted her quickly. that was were the similarities to the first episode ended, however.
dr. gollob's assistant came in around 8 am and told us that the fluid had accumulated at such a rate that she would most likely not be able to start treatment as originally planned. she was going to have a ct scan to see exactly how much fluid she had and they would determine what steps would need to be taken. we waited around most of the day while they pumped ellen full of morphine, adavan, zofran and host of other drugs in an attempt to keep her comfortable. a torturous day, really, that we spent in total limbo. we had no idea whether she would have the procedure tonight or tomorrow, whether it would interfere with her treatment, etc.
dr. gollob and a pulmonary specialist finally came to see us around 8 pm. they had decided that she would have a procedure done tomorrow morning to insert a chest tube and drain the fluid more permanently. a small incision will be made in her rib cage where they will insert a vacuum tube that should drain the fluid rather quickly. then they will spray in talc (yes, plain talc) to 'glue' the lung's outer wall to the chest cavity membrane where the fluid had accumulated. the tube will stay in for another day or two to make sure that all of the fluid is removed. start to finish, the procedure should take over an hour and she should feel relief almost immediately after coming out of the anesthesia.
this is our new main objective. we were assured that the delay would not aggravate her condition and dr. gollob has decided that they need to get this under control before he will start her on the interleukin-2. if things work as planned, she will be discharged on thursday and spend the extended weekend at home. the thought is that she needs to be physically sound when starting the treatment the following monday, the 30th.
right now she is resting comfortably.
dr. gollob's assistant came in around 8 am and told us that the fluid had accumulated at such a rate that she would most likely not be able to start treatment as originally planned. she was going to have a ct scan to see exactly how much fluid she had and they would determine what steps would need to be taken. we waited around most of the day while they pumped ellen full of morphine, adavan, zofran and host of other drugs in an attempt to keep her comfortable. a torturous day, really, that we spent in total limbo. we had no idea whether she would have the procedure tonight or tomorrow, whether it would interfere with her treatment, etc.
dr. gollob and a pulmonary specialist finally came to see us around 8 pm. they had decided that she would have a procedure done tomorrow morning to insert a chest tube and drain the fluid more permanently. a small incision will be made in her rib cage where they will insert a vacuum tube that should drain the fluid rather quickly. then they will spray in talc (yes, plain talc) to 'glue' the lung's outer wall to the chest cavity membrane where the fluid had accumulated. the tube will stay in for another day or two to make sure that all of the fluid is removed. start to finish, the procedure should take over an hour and she should feel relief almost immediately after coming out of the anesthesia.
this is our new main objective. we were assured that the delay would not aggravate her condition and dr. gollob has decided that they need to get this under control before he will start her on the interleukin-2. if things work as planned, she will be discharged on thursday and spend the extended weekend at home. the thought is that she needs to be physically sound when starting the treatment the following monday, the 30th.
right now she is resting comfortably.
Saturday, July 21, 2007
two liters
ellen woke me at about 1:15 am, friday morning. she said that she was having trouble breathing and couldn't sleep. we were checked out of the hotel and on the road by 1:45.
we got to the emergency room at duke by 4:00 am. there were about 10 people waiting but ellen was taken back within 5 minutes. they got her to her room in the e.r. and did some blood work and did a chest x-ray. after seeing the 'impressive' (the doctor's word) amount of fluid on her right lung they decided to admit her.
we were taken to a private room on the 9th floor and waited a while to see someone (this was good because we were both able to take a nap for a little bit). later in the afternoon two doctors came in and gave us the options. she could have a chest tube inserted to remove all of the fluid or she could have most of the fluid drawn off from a needle through her back. the first option would have required her to stay, at least, overnight. the second option, though most likely not permanent, would give her relief until she checked into the hospital on monday. the second option seemed more reasonable because if she has to have the chest tube later, she'd already be in the hospital.
the two doctors came in to do the procedure at her bedside. they opened up a kit and filled her back full of lidocaine but made one crucial mistake: they told ellen everything that they were doing. "you'll feel some pressure from the needle" and "now i'm insering the tap to draw the fluid" were not things that ellen wanted to hear. they were able to pull out 3 small specimen tubes before ellen called it quits and decided that she wanted to throw up.
after some time ellen and the doctors decided that they would give it another try with one major change: they weren't allowed to tell her anything. this time we all chatted about where we were all from, schools attended, etc. after 20 minutes or so they had pulled two liters of fluid from her lung. it was astonishing. she had been trying to breath with all of that fluid pulling down on her lung.
they discharged her and said she should feel better for the next few days. fortunately we were able to get into the apartment a few days early so we are taking it easy and trying to rest for the upcoming week.
two liters.
we got to the emergency room at duke by 4:00 am. there were about 10 people waiting but ellen was taken back within 5 minutes. they got her to her room in the e.r. and did some blood work and did a chest x-ray. after seeing the 'impressive' (the doctor's word) amount of fluid on her right lung they decided to admit her.
we were taken to a private room on the 9th floor and waited a while to see someone (this was good because we were both able to take a nap for a little bit). later in the afternoon two doctors came in and gave us the options. she could have a chest tube inserted to remove all of the fluid or she could have most of the fluid drawn off from a needle through her back. the first option would have required her to stay, at least, overnight. the second option, though most likely not permanent, would give her relief until she checked into the hospital on monday. the second option seemed more reasonable because if she has to have the chest tube later, she'd already be in the hospital.
the two doctors came in to do the procedure at her bedside. they opened up a kit and filled her back full of lidocaine but made one crucial mistake: they told ellen everything that they were doing. "you'll feel some pressure from the needle" and "now i'm insering the tap to draw the fluid" were not things that ellen wanted to hear. they were able to pull out 3 small specimen tubes before ellen called it quits and decided that she wanted to throw up.
after some time ellen and the doctors decided that they would give it another try with one major change: they weren't allowed to tell her anything. this time we all chatted about where we were all from, schools attended, etc. after 20 minutes or so they had pulled two liters of fluid from her lung. it was astonishing. she had been trying to breath with all of that fluid pulling down on her lung.
they discharged her and said she should feel better for the next few days. fortunately we were able to get into the apartment a few days early so we are taking it easy and trying to rest for the upcoming week.
two liters.
Thursday, July 19, 2007
wrightsville beach, nc
this blog will serve as an update center from now on. please visit regularly to read about ellen's continuing condition. please feel free to post comments, words of encouragement, whatever crosses your mind. if you are more comfortable with e-mailing, for whatever reason, please do not think that this blog will stop me from answering any inquiries in private. please also feel free to pass the address of this blog on to anyone who might want to be updated.
we are currently spending some time on the beach in cape fear. it's about a 2 hour drive east of durham. we decided to head to the coast to relax (as much as possible, anyway) and get our heads right in preparation for the coming months. it's about 100 degrees but ellen is in good spirits.
it's a peaceful thing hearing the waves.
we are currently spending some time on the beach in cape fear. it's about a 2 hour drive east of durham. we decided to head to the coast to relax (as much as possible, anyway) and get our heads right in preparation for the coming months. it's about 100 degrees but ellen is in good spirits.
it's a peaceful thing hearing the waves.
Subscribe to:
Posts (Atom)