the second week of treatment is almost complete. for the most part, today was the same as yesterday. ellen slept quite a bit again. she was awake long enough to do some physical therapy in the form of resistance training. she stayed in bed for it but still worked up a bit of a sweat. it was nice to see a grimace that wasn't related to pain.
some good news: her creatnine count (the number that is related to her kidney function) is still holding steady at 1.3. this is the high limit of normal function, but normal nonetheless.
some more good news: todd decided to stay for a few more days. suzy dropped him off at the airport and when she got all the way back to the parking deck at the hospital and he called her to come back and get him. we're all glad to have him around for a while longer.
some not so good news: the fluid reaccumulated on her stomach again. to be clear, this isn't an indication that her condition is worse, it is more a byproduct of the disease that the doctors said occurs in "about 90%" of patients. they sent her down for an ultrasound and marked the spot for another paracentesis tomorrow. if the fluid does not stay off this time they may consider a catheter that she would be able to use to remove fluid herself.
please continue to send good thoughts. keep posting too. whenever she can, ellen loves to catch up on her blog posts.
hope everyone is well.
Friday, August 31, 2007
Thursday, August 30, 2007
lots of sleep
today was even slower. don, suzy and todd were here again but ellen spent a large portion of the day sleeping, not that she needed to entertain us. dr. gollob made his daily visit and said that everything is about the same. her creatnine count is holding steady at 1.3. the doctors seemed to have found the perfect combination of medicine to keep her anxiety, nausea and pain at a minimum. she was able to go for a short walk but that was about the extent of the action.
besides, a longer walk may have yielded, in her words, "a walking DUI".
besides, a longer walk may have yielded, in her words, "a walking DUI".
Wednesday, August 29, 2007
more fluid
it's been a relatively slow day, really. because of a few anxiety attacks yesterday and through the night, ellen has been given new medication to help her relax. as a result, she spent most of the day napping.
she was wide awake, though, when she had another 3 liters removed from her abdomen. if you recall, she was not conscious enough the last time to remember the process. she handled it well, despite not knowing what to expect. to clarify, this is not like the chest tube that she had to remove fluid from around her lung. in this procedure, called a paracentesis, they first take an ultrasound image to find the pocket of fluid. after marking the spot, they insert a needle that has a plastic sheath around it. when they find the pocket of fluid, they remove the needle and attach the tubing to vacuum jars and suck it out. the whole process took about 35 minutes.
since then she has been alternating between naps and visiting with todd, who came in late last night, and angie, who was here for a few hours.
keep the positive thoughts coming. she will certainly need them in the upcoming days.
she was wide awake, though, when she had another 3 liters removed from her abdomen. if you recall, she was not conscious enough the last time to remember the process. she handled it well, despite not knowing what to expect. to clarify, this is not like the chest tube that she had to remove fluid from around her lung. in this procedure, called a paracentesis, they first take an ultrasound image to find the pocket of fluid. after marking the spot, they insert a needle that has a plastic sheath around it. when they find the pocket of fluid, they remove the needle and attach the tubing to vacuum jars and suck it out. the whole process took about 35 minutes.
since then she has been alternating between naps and visiting with todd, who came in late last night, and angie, who was here for a few hours.
keep the positive thoughts coming. she will certainly need them in the upcoming days.
Tuesday, August 28, 2007
2nd round
ellen started her second course of treatment today. it was not an auspicious beginning, naturally.
ellen woke up after a nap having a bit of an anxiety attack. despite an oxygen level of 95-96, she was having trouble breathing. the nurse called in a respiratory therapist to administer some oxygen and medication to ease the muscles leading into her lungs so she could breathe better. that, in addition to some other medication, gave her enough relief to fall asleep.
after another nap it was time to start the chemo. ellen hates pills and this treatment requires plenty. you're aware, by now, that she started late because a touch of pneumonia caused some discomfort ('some' being a relative term in her case). dr. gollob had stopped in and confirmed that she would be starting later this afternoon. he also mentioned that he was backing of the dosage on one of the drugs in hopes that it might not ravage her kidneys like it did before. that slight alteration notwithstanding, the next several days will not be pleasant.
if you have been reading this blog faithfully, you are well versed in what she will be going through. regardless, i will do my best to update everyday. if you are recently new to the blog, now is the time to send all of your best, positive thoughts. she will need them.
hope everyone is well.
ellen woke up after a nap having a bit of an anxiety attack. despite an oxygen level of 95-96, she was having trouble breathing. the nurse called in a respiratory therapist to administer some oxygen and medication to ease the muscles leading into her lungs so she could breathe better. that, in addition to some other medication, gave her enough relief to fall asleep.
after another nap it was time to start the chemo. ellen hates pills and this treatment requires plenty. you're aware, by now, that she started late because a touch of pneumonia caused some discomfort ('some' being a relative term in her case). dr. gollob had stopped in and confirmed that she would be starting later this afternoon. he also mentioned that he was backing of the dosage on one of the drugs in hopes that it might not ravage her kidneys like it did before. that slight alteration notwithstanding, the next several days will not be pleasant.
if you have been reading this blog faithfully, you are well versed in what she will be going through. regardless, i will do my best to update everyday. if you are recently new to the blog, now is the time to send all of your best, positive thoughts. she will need them.
hope everyone is well.
sorry for delay
hi everyone-
sorry there wasn't a post yesterday or sunday, i was not doing well at all. i know ryan could have posted but who knows what happened with that (he is a guy::). i will make sure he does all week since i won't be able to.
heck, i am on so many medications right now i'm having a hard time typing. here is the update of what has happened-
sunday:couldn't get out of bed most of the day but finally did get to walk some laps with a walker. ryan took me for a second walk about 11:30pm that night too. of course the pink bucket went with us:) the nausea is taking over my body. i have been receiving antibiotics by IV and a ton of fluid!!! i am on the 8th bag and each bag is a liter. one of dr. gollob's partners came in and said the chest x-ray is showing the same except for the pneumonia. on sunday my kidney count was 1.8. three iv's needed pulled throughout two days because they were bad.
monday: again could barely get out of bed. monday's liver count was 1.6. dr. gollob came in to speak with us. he said that i looked heathly, even though my hair is almost gone. he said i should have no problem starting on Monday night. well it took forever for the IV team to come put my pik line. let me tell you how much fun that was! by the the time that was done it was too late.
so....today is the day. i start treatment this afternoon. all the meds needed ordered from downstairs. hilary (dr. gollob's) pa came in, checked me over and said everything looks good. she also said my liver count is down to 1.4!!!
i am going to make ryan write you all tonight to let you know how things went this afternoon.
besides the above i have been wheeled back and forth a few times to the CT x-ray. yesterday the driver made me motion sickness. he was basically doing 2 wheelies in the hall in the wheelchair.
i am holding up alright. i m in good spirits but still just nervous if it will work or not.
but i feel very anxious all of the time. hopefully it will pass when i'm all drugged up!
please keep me in your prayers.
love,
ellen
sorry there wasn't a post yesterday or sunday, i was not doing well at all. i know ryan could have posted but who knows what happened with that (he is a guy::). i will make sure he does all week since i won't be able to.
heck, i am on so many medications right now i'm having a hard time typing. here is the update of what has happened-
sunday:couldn't get out of bed most of the day but finally did get to walk some laps with a walker. ryan took me for a second walk about 11:30pm that night too. of course the pink bucket went with us:) the nausea is taking over my body. i have been receiving antibiotics by IV and a ton of fluid!!! i am on the 8th bag and each bag is a liter. one of dr. gollob's partners came in and said the chest x-ray is showing the same except for the pneumonia. on sunday my kidney count was 1.8. three iv's needed pulled throughout two days because they were bad.
monday: again could barely get out of bed. monday's liver count was 1.6. dr. gollob came in to speak with us. he said that i looked heathly, even though my hair is almost gone. he said i should have no problem starting on Monday night. well it took forever for the IV team to come put my pik line. let me tell you how much fun that was! by the the time that was done it was too late.
so....today is the day. i start treatment this afternoon. all the meds needed ordered from downstairs. hilary (dr. gollob's) pa came in, checked me over and said everything looks good. she also said my liver count is down to 1.4!!!
i am going to make ryan write you all tonight to let you know how things went this afternoon.
besides the above i have been wheeled back and forth a few times to the CT x-ray. yesterday the driver made me motion sickness. he was basically doing 2 wheelies in the hall in the wheelchair.
i am holding up alright. i m in good spirits but still just nervous if it will work or not.
but i feel very anxious all of the time. hopefully it will pass when i'm all drugged up!
please keep me in your prayers.
love,
ellen
Saturday, August 25, 2007
first day in the hospital
hi everyone,
well i am sitting in my hospital room receiving a blood transfusion. it will take 4-5 hours to get the 4 bags. it will probably take more like 5 hours because they will to stop to give me my antibiotic for the pneumonia. i slept most of today. it felt so good. for as much as i hate being in the hospital i feel better being here so they can do something if i'm not feeling well, etc. i guess you could say it's a comfort for me.
three doctors came in this morning at 8am . for a sat. morning 8am was nothing because we were awoken at 5:10 am to a x-ray tech ready to take a chest x-ray. that was a treat! we found out this morning it appears treatment may not start until tuesday or wednesday. obviously the pneumonia needs to be out of my system before they start.
my kidney count yesterday was at 2.2 and today it was at 1.8. so that is good. they assume it will go down again by tomorrow as i am on my 5th bag of fluid. they intend on having a fluid drip the entire time i am here so i think i will be plenty hydrated.
i am comfortable on the 9th floor. i had one of my nurses today from last time. she is such a sweetheart. everyone is really good to me up here on floor 9 so at least that is a bonus.
i will be happy when i am feeling better. i do feel a little better but i am still very nauseous. also i take a pain pill every 4 hours because i pulled 2 muscles from all the dry heaving and vomiting. i forgot what a pulled muscle felt like since i haven't done anything aerobic in a very long time. ha ha.
ryan is taking good care of me and i am so happy he came back. of course he came back just in time to take me to the er and then be admitted. so much for a nice weekend together before treatment. this really has been such a nightmare for all of us. i would do anything for this to be over but it will be one day.
as always please pray for me. i need them all right now!
love to all and have a good Saturday night and rest of the weekend!
ellen
well i am sitting in my hospital room receiving a blood transfusion. it will take 4-5 hours to get the 4 bags. it will probably take more like 5 hours because they will to stop to give me my antibiotic for the pneumonia. i slept most of today. it felt so good. for as much as i hate being in the hospital i feel better being here so they can do something if i'm not feeling well, etc. i guess you could say it's a comfort for me.
three doctors came in this morning at 8am . for a sat. morning 8am was nothing because we were awoken at 5:10 am to a x-ray tech ready to take a chest x-ray. that was a treat! we found out this morning it appears treatment may not start until tuesday or wednesday. obviously the pneumonia needs to be out of my system before they start.
my kidney count yesterday was at 2.2 and today it was at 1.8. so that is good. they assume it will go down again by tomorrow as i am on my 5th bag of fluid. they intend on having a fluid drip the entire time i am here so i think i will be plenty hydrated.
i am comfortable on the 9th floor. i had one of my nurses today from last time. she is such a sweetheart. everyone is really good to me up here on floor 9 so at least that is a bonus.
i will be happy when i am feeling better. i do feel a little better but i am still very nauseous. also i take a pain pill every 4 hours because i pulled 2 muscles from all the dry heaving and vomiting. i forgot what a pulled muscle felt like since i haven't done anything aerobic in a very long time. ha ha.
ryan is taking good care of me and i am so happy he came back. of course he came back just in time to take me to the er and then be admitted. so much for a nice weekend together before treatment. this really has been such a nightmare for all of us. i would do anything for this to be over but it will be one day.
as always please pray for me. i need them all right now!
love to all and have a good Saturday night and rest of the weekend!
ellen
emergency room - redux
as you are all aware, ellen had a rough week. nausea, dehydration, lack of sleep - she was not in good shape by the time i returned to durham thursday night. friday morning we called dr. gollob's p.a. and were told to head into the emergency room.
to be clear, we love duke medical center. the nurses are first rate, the doctors are amazing, even the maintenance staff is affable. the emergency room, however, is a nightmare. we were aware of this heading in and it didn't disappoint. there was no shortage of people and the symphony of coughs and hacks was the opposite of pleasant. there was also a gentlemen next to us that had brought in his infant daughter. from what ellen and i could gather there may or may not have been something going on with the babysitter, the emergency staff might have accused him of beating his child and if his wife/girlfriend (we're not sure which she is) came home he would "beat the f--- out of her". the emergency staff called in security. he informed them that they were being "very rude". i'm not sure how he knew they were being rude, though, because he never stopped yelling and cursing long enough to listen to them. there is no experience quite like 10 hours in the emergency room. at least we were entertained.
they ran tests and determined that she has a touch of pneumonia. this explains the nausea, elevated fever AND eliminates the mystery behind the night she woke up in a pool of sweat. so, to review, she did NOT pee the bed, she did NOT pour water on herself and she did NOT take a shower with all of her clothes on. she was admitted and we got a room on the oncology floor around 8:30.
they have been running fluids and antibiotics in addition to her pain and nausea medication. the thought is that she might not be able to start treatment on monday, as scheduled, but it would be another day or two, at the most. we are now in room 9131.
hope everyone is well.
to be clear, we love duke medical center. the nurses are first rate, the doctors are amazing, even the maintenance staff is affable. the emergency room, however, is a nightmare. we were aware of this heading in and it didn't disappoint. there was no shortage of people and the symphony of coughs and hacks was the opposite of pleasant. there was also a gentlemen next to us that had brought in his infant daughter. from what ellen and i could gather there may or may not have been something going on with the babysitter, the emergency staff might have accused him of beating his child and if his wife/girlfriend (we're not sure which she is) came home he would "beat the f--- out of her". the emergency staff called in security. he informed them that they were being "very rude". i'm not sure how he knew they were being rude, though, because he never stopped yelling and cursing long enough to listen to them. there is no experience quite like 10 hours in the emergency room. at least we were entertained.
they ran tests and determined that she has a touch of pneumonia. this explains the nausea, elevated fever AND eliminates the mystery behind the night she woke up in a pool of sweat. so, to review, she did NOT pee the bed, she did NOT pour water on herself and she did NOT take a shower with all of her clothes on. she was admitted and we got a room on the oncology floor around 8:30.
they have been running fluids and antibiotics in addition to her pain and nausea medication. the thought is that she might not be able to start treatment on monday, as scheduled, but it would be another day or two, at the most. we are now in room 9131.
hope everyone is well.
Thursday, August 23, 2007
Thursday
well there is nothing new to report but i am sitting on the couch and don't have any idea what to do with myself so i thought i would write to everyone.
i am still not feeling well but a little bit better. a little bit better is something though!
i am "patiently" waiting for ryan to get back down here. he had a rough few days at home for those that read the blog from dr:) it was quite funny! i think it happened on tuesday. of course he also had to rip up the carpet in his study, take a final and develop an entire website. he has been really busy since tuesday morning until leaving today at 2pm. plus on top of that he had to field calls from me about my prescriptions, crying, etc. this morning my mom and i thought it was an overdose due to how sick i was(that was a 7am call). good thing he is coming back down here. he probably freaks out when the phone rings:)
only 3 full more days until treatment. i can't wait to get back in there to get rid of the cancer. i am going to dread how i will feel but i most likely won't remember it anyhow.
please keep me in your thoughts and prayers (as always)
ellen
i am still not feeling well but a little bit better. a little bit better is something though!
i am "patiently" waiting for ryan to get back down here. he had a rough few days at home for those that read the blog from dr:) it was quite funny! i think it happened on tuesday. of course he also had to rip up the carpet in his study, take a final and develop an entire website. he has been really busy since tuesday morning until leaving today at 2pm. plus on top of that he had to field calls from me about my prescriptions, crying, etc. this morning my mom and i thought it was an overdose due to how sick i was(that was a 7am call). good thing he is coming back down here. he probably freaks out when the phone rings:)
only 3 full more days until treatment. i can't wait to get back in there to get rid of the cancer. i am going to dread how i will feel but i most likely won't remember it anyhow.
please keep me in your thoughts and prayers (as always)
ellen
Wednesday, August 22, 2007
wednesday
well this is the earliest i have made a post but i know people are wondering about the doctor.
there was no doctor today. last night as i was lying in bed and my mom was talking to me i started vomiting again. not fun to do late at night. i was up almost all night not feeling well. i did get up this morning to try to get ready but my body just wasn't having it. i was so upset but called the doctor's office to cancel. the worst thought was running through my mind..."i won't be able to start treatment on Monday" but even though that was running through my mind i couldn't get my body out of bed and away from the pink bucket.
finally at 9:15, beth the pa called. she has been so nice to us this entire time. she said that is was alright i didn't make it in. i am still scheduled to start treatment on monday, check in at 8:30am. what a relief that was to me! she said that the vomiting is a most likely left over from the chemo especially since i'm losing all my hair now too. she said i had a later reaction than most people. (go figure, my body has done everything differently under this, but who cares as long as it kills the cancer)
she called in a much stronger prescription for nausea and i am also to continue taking what i have. my mom is at cvs picking it up right now. i am praying that i do not vomit while she is gone. it wasn't good before she left. i did not know it was even possible to feel so horrible!
seriously, last january during interferon i thought i couldn't feel any worse. then radiation came along and i lost all of my taste within a week so i couldn't eat, i felt like i was going to vomit the entire time (never did though), and was so weak. now i am down at duke doing a chemo switch and i'm sicker than a dog. heck during treatment i have memory problems. due to how strong this chemo is i hope and pray it is killing everything. i have never in my life felt so sick. it is unreal the feeling i have each day. it's hard to believe i can actually feel like i'm dying while fighting for my life. but i know that is the point of this stuff so i keep going. my hope is that i am so sick because the chemo is working in my benefit.
so i am scheduled for treatment and she said today that i will probably still need a blood transfusion but it can be done next week while i'm having treatment. to me that works out great. i was probably going to have to go for 4-5 hours tomorrow but now i will just be at the hospital. works out nicely i think.
on a positive note: my dad called this morning and i am in the akron beacon journal today. thanks to chamber! ryan is going out to get it. so that is fun. read it if you get a chance:)
hope you all have a nice day!
love,
ellen
there was no doctor today. last night as i was lying in bed and my mom was talking to me i started vomiting again. not fun to do late at night. i was up almost all night not feeling well. i did get up this morning to try to get ready but my body just wasn't having it. i was so upset but called the doctor's office to cancel. the worst thought was running through my mind..."i won't be able to start treatment on Monday" but even though that was running through my mind i couldn't get my body out of bed and away from the pink bucket.
finally at 9:15, beth the pa called. she has been so nice to us this entire time. she said that is was alright i didn't make it in. i am still scheduled to start treatment on monday, check in at 8:30am. what a relief that was to me! she said that the vomiting is a most likely left over from the chemo especially since i'm losing all my hair now too. she said i had a later reaction than most people. (go figure, my body has done everything differently under this, but who cares as long as it kills the cancer)
she called in a much stronger prescription for nausea and i am also to continue taking what i have. my mom is at cvs picking it up right now. i am praying that i do not vomit while she is gone. it wasn't good before she left. i did not know it was even possible to feel so horrible!
seriously, last january during interferon i thought i couldn't feel any worse. then radiation came along and i lost all of my taste within a week so i couldn't eat, i felt like i was going to vomit the entire time (never did though), and was so weak. now i am down at duke doing a chemo switch and i'm sicker than a dog. heck during treatment i have memory problems. due to how strong this chemo is i hope and pray it is killing everything. i have never in my life felt so sick. it is unreal the feeling i have each day. it's hard to believe i can actually feel like i'm dying while fighting for my life. but i know that is the point of this stuff so i keep going. my hope is that i am so sick because the chemo is working in my benefit.
so i am scheduled for treatment and she said today that i will probably still need a blood transfusion but it can be done next week while i'm having treatment. to me that works out great. i was probably going to have to go for 4-5 hours tomorrow but now i will just be at the hospital. works out nicely i think.
on a positive note: my dad called this morning and i am in the akron beacon journal today. thanks to chamber! ryan is going out to get it. so that is fun. read it if you get a chance:)
hope you all have a nice day!
love,
ellen
Tuesday, August 21, 2007
Tuesday Evening
i have absolutely nothing new to report. i am still really sick and right now i am trying to figure out how i am going to make it to the doctor in the morning for blood work and a check up. i have decided i think the puke bucket will have to come with my mom and i. no question about it.
my mom is trying to keep me busy, god love her. i just feel too sick to do anything right now. the best she can do is play UNO with me but i love that game so it works for me. we played for hours last night and probably will tonight. at least that helps keep my mind off of things.
well i am going to be shaving the remainder of my hair off on friday when ryan comes back down to durham. i figure i will give it a few more days and then i won't be able to handle hardly anything being there. plus i am so sick of collecting hair all over my clothes. it grosses me out! and it completely grosses me out how it comes out in major chunks. gross.
my aunt emailed this morning and gave a good suggestion...if anyone is looking for something to send me but has no idea what...you can send me scarves or hats. i am in need of them. ryan is going to bring me a couple of hats that will keep me warm at night. but we have no scarves yet. i am going to send my mom to target in the next few days. but that is just an idea for anyone that wonders what i can use. i don't "require" a gift, please don't think that is why i wrote this! i just wanted to help with an idea because people are always asking me, ryan and my parents what i could use.
hope everyone has a good night and i will report tomorrow after the doctor. i am hopeful for good news!
love,
ellen
my mom is trying to keep me busy, god love her. i just feel too sick to do anything right now. the best she can do is play UNO with me but i love that game so it works for me. we played for hours last night and probably will tonight. at least that helps keep my mind off of things.
well i am going to be shaving the remainder of my hair off on friday when ryan comes back down to durham. i figure i will give it a few more days and then i won't be able to handle hardly anything being there. plus i am so sick of collecting hair all over my clothes. it grosses me out! and it completely grosses me out how it comes out in major chunks. gross.
my aunt emailed this morning and gave a good suggestion...if anyone is looking for something to send me but has no idea what...you can send me scarves or hats. i am in need of them. ryan is going to bring me a couple of hats that will keep me warm at night. but we have no scarves yet. i am going to send my mom to target in the next few days. but that is just an idea for anyone that wonders what i can use. i don't "require" a gift, please don't think that is why i wrote this! i just wanted to help with an idea because people are always asking me, ryan and my parents what i could use.
hope everyone has a good night and i will report tomorrow after the doctor. i am hopeful for good news!
love,
ellen
Monday, August 20, 2007
Most Recent Update-Monday
hi everyone,
sorry for no post yesterday. that was unlike us however i was extremely sick. so much so ryan was supposed to leave to go back to north canton but did not leave. my mom arrived yesterday so she was here but i wasn't in a condition for ryan to leave. i felt worse to because i couldn't keep water down so i was really dehydrated. we left a message last night for my doctor and they called this morning. my pa said that it was most likely from treatment, or anxiety or a touch of the flu that someone brought into the loft (since i never leave this place)! whatever it was...i don't want to feel like that again! (well i guess until treatment i should say when i'm in the hospital).
my hair is almost completely gone. it is really thin on top and now it just comes out in clumps. i can honestly say i get a little nausea when it comes out like that but i'm not upset it is gone. i can deal with hats and wigs, etc. i just don't like watching it come out like that! i'm sure it will be all gone in the next couple of days. my only problem i just realized... i have no wig and no scarves/hats. i'm going to have to send my mom out looking!
the biggest news that was decided today (probably due to yesterday's mess)...Ryan will NOT be returning to school and teaching at Stark State this semester. Ryan and I have been toying with the idea of him going home or staying here but finally decided last week it was best he goes back. he received a call from his advisor that he was going to teach 3 graphic design classes and things were headed in the direction he wanted. so...he was all ready to go yesterday to be back for a meeting tonight and we both looked at each other and thought why??? why are we going to put separation between us while i am fighting for my life??
i was having a really difficult time with him leaving. i kept trying to figure out how i was going to make it through 2-4 more rounds of treatment in the hospital without him by my side. i was so fearful i would give up one of those days because he wasn't by my side. (now to my parents...i love you and know you can take care of me!) there is just something about your husband being by your side. he has taken care of me this entire time and i just wasn't really sure how to continue without him here everyday. he is my rock!
so this afternoon, an hour before he left to go back to north canton to finish up some work from his summer classes and go to some professor meetings for the new semester we decided he would NOT go back this semester. i feel so calm now and know we made the right decision! we have the ability to do this now so we think it's best we remain together. school and teaching will be there next semester waiting for him and then i will hopefully be healthy again. that is what is important right now...my health. i strongly believe that it is easier to give up when you don't have your loved one by your side. we have been headed in the right direction and there is no reason to take a chance my health could change due to ryan not being here.
so we will remain down in durham until the day i am finished and the cancer is out of my body. right now it looks like we will be here until middle/end of october. i couldn't even imagine trying to do this without him here and just seeing him on weekends. so i got want i wanted in the end (don't i always haha:) I have my husband, my rock back by my side at the end of this week.
well i should say if i can break him away from DR. once he gets home and those two start talking about the yard wars, etc. i may not see him again:) ryan is particular about his yard. he talks about it while we are here so now that he is going home and will be right there with it who knows what will happen:) i know christy will force ryan into the car though, right christy!
oh and how can i forget, ryan will run out of there because he will be so mad at our cat, nugent who we found out the other night from dr and christy has apparently taken up peeing in ryan's study. he thinks it's a huge litter box and available for his use. so ryan is going to be ripping up carpet (another home improvement we will have when we get back in town). hopefully with the carpet gone he will stop using it as a litter box but not find another carpeted room to use in it's place. i can see the dollar signs:)
so everyone that is our update for now. i was also wondering who was going to write the medical updates while ryan was not around! there may not have been a blog:) however, for those that have been asking...ryan does plan on getting our website for an artful life, llc up and running soon now that he will have a ton of spare time (besides helping me). so i hope that is done sooner rather than later! we will let you know when it's ready.
keep the prayers and good thoughts coming my way! i still need a ton of them!
sorry for no post yesterday. that was unlike us however i was extremely sick. so much so ryan was supposed to leave to go back to north canton but did not leave. my mom arrived yesterday so she was here but i wasn't in a condition for ryan to leave. i felt worse to because i couldn't keep water down so i was really dehydrated. we left a message last night for my doctor and they called this morning. my pa said that it was most likely from treatment, or anxiety or a touch of the flu that someone brought into the loft (since i never leave this place)! whatever it was...i don't want to feel like that again! (well i guess until treatment i should say when i'm in the hospital).
my hair is almost completely gone. it is really thin on top and now it just comes out in clumps. i can honestly say i get a little nausea when it comes out like that but i'm not upset it is gone. i can deal with hats and wigs, etc. i just don't like watching it come out like that! i'm sure it will be all gone in the next couple of days. my only problem i just realized... i have no wig and no scarves/hats. i'm going to have to send my mom out looking!
the biggest news that was decided today (probably due to yesterday's mess)...Ryan will NOT be returning to school and teaching at Stark State this semester. Ryan and I have been toying with the idea of him going home or staying here but finally decided last week it was best he goes back. he received a call from his advisor that he was going to teach 3 graphic design classes and things were headed in the direction he wanted. so...he was all ready to go yesterday to be back for a meeting tonight and we both looked at each other and thought why??? why are we going to put separation between us while i am fighting for my life??
i was having a really difficult time with him leaving. i kept trying to figure out how i was going to make it through 2-4 more rounds of treatment in the hospital without him by my side. i was so fearful i would give up one of those days because he wasn't by my side. (now to my parents...i love you and know you can take care of me!) there is just something about your husband being by your side. he has taken care of me this entire time and i just wasn't really sure how to continue without him here everyday. he is my rock!
so this afternoon, an hour before he left to go back to north canton to finish up some work from his summer classes and go to some professor meetings for the new semester we decided he would NOT go back this semester. i feel so calm now and know we made the right decision! we have the ability to do this now so we think it's best we remain together. school and teaching will be there next semester waiting for him and then i will hopefully be healthy again. that is what is important right now...my health. i strongly believe that it is easier to give up when you don't have your loved one by your side. we have been headed in the right direction and there is no reason to take a chance my health could change due to ryan not being here.
so we will remain down in durham until the day i am finished and the cancer is out of my body. right now it looks like we will be here until middle/end of october. i couldn't even imagine trying to do this without him here and just seeing him on weekends. so i got want i wanted in the end (don't i always haha:) I have my husband, my rock back by my side at the end of this week.
well i should say if i can break him away from DR. once he gets home and those two start talking about the yard wars, etc. i may not see him again:) ryan is particular about his yard. he talks about it while we are here so now that he is going home and will be right there with it who knows what will happen:) i know christy will force ryan into the car though, right christy!
oh and how can i forget, ryan will run out of there because he will be so mad at our cat, nugent who we found out the other night from dr and christy has apparently taken up peeing in ryan's study. he thinks it's a huge litter box and available for his use. so ryan is going to be ripping up carpet (another home improvement we will have when we get back in town). hopefully with the carpet gone he will stop using it as a litter box but not find another carpeted room to use in it's place. i can see the dollar signs:)
so everyone that is our update for now. i was also wondering who was going to write the medical updates while ryan was not around! there may not have been a blog:) however, for those that have been asking...ryan does plan on getting our website for an artful life, llc up and running soon now that he will have a ton of spare time (besides helping me). so i hope that is done sooner rather than later! we will let you know when it's ready.
keep the prayers and good thoughts coming my way! i still need a ton of them!
Saturday, August 18, 2007
live at the msf
hi all.
we are online and watching. hope everyone has a moment to say hi.
~ryan and ellen
we are online and watching. hope everyone has a moment to say hi.
~ryan and ellen
Friday, August 17, 2007
north canton chamber main street festival
well many of you know that this weekend is the north canton chamber main street festival. i have been working very hard the last several months as the co-chair of the event and have been really upset that i will not be there this year. it was one of the most difficult things i had to do on july 13 when we found out about the cancer. i had to call and step down.
so today, ryan informs me that the kindy family of north canton tv and appliance has set up a camera to allow me to see what is going on at the main street festival. this couldn't have come at a better time because i was not having a good day at all! thank you so much kindy family!
don't get too excited... you won't be able to see my lovely face but i will be able to see and hear everything that YOU do! i think it works out nicely.
the camera will be up for the duration of the festival but i will be watching it from 1-3 and from 6:30-8 on saturday. there will also be someone there with a computer so that you can write messages to us on this blog.
the north canton chamber has been so wonderful to me. in addition to this, they have set up our paintings at the chamber booth to exhibit an artful life, llc. we have paintings for sale, are taking orders, and you can see what we are doing with the north canton medical foundation's cancer relief fund. the booth will be directly in front of the north canton chamber of commerce.
hope to see you tomorrow.
so today, ryan informs me that the kindy family of north canton tv and appliance has set up a camera to allow me to see what is going on at the main street festival. this couldn't have come at a better time because i was not having a good day at all! thank you so much kindy family!
don't get too excited... you won't be able to see my lovely face but i will be able to see and hear everything that YOU do! i think it works out nicely.
the camera will be up for the duration of the festival but i will be watching it from 1-3 and from 6:30-8 on saturday. there will also be someone there with a computer so that you can write messages to us on this blog.
the north canton chamber has been so wonderful to me. in addition to this, they have set up our paintings at the chamber booth to exhibit an artful life, llc. we have paintings for sale, are taking orders, and you can see what we are doing with the north canton medical foundation's cancer relief fund. the booth will be directly in front of the north canton chamber of commerce.
hope to see you tomorrow.
Thursday, August 16, 2007
thursday night
well after a report like last night i wasn't even going to write anything but i know no one can sleep without hearing from me. just kidding:)
we have been having trouble with the air in our loft. it is either freezing cold or we turn it off and it is like 100 degrees in here. of course we are here while durham is hitting record highs. it is horrible and i never go outside (which makes for super, long days)
here's a story for you all...i guess last night i was back to my complaining self when ryan came into bed. as some of you know i have been having difficulty remembering how things happen to me at night. well last night was one of them. ryan came to bed and the bed was soaking wet, as was i. there are only a couple of options in my head of course of what could have happened. 1.) i broke a fever 2.) i dumped a whole bottle of water on me from the nightstand because i was hot and thought i was at the beach 3.) i took another shower without my dad or Ryan knowing or WITH all of my clothes on 4.) i had 4 blankets on me or 5.) i wet myself
i would really like to think it wasn't the 5th especially since the top of my sweatshirt was wet but since I was blamed that it may be a possibility i will be honest and include it. and to add, that is pretty gross then if ryan didn't change me and slept right next to me:)
but while there is major commotion between ryan and i because i am soaking wet and apparently i am not really useful with helping me get new clothes on so late at night. i think i just kept telling him to "change me". i really do not remember this happening at all and apparently ryan felt after my tantrum i could sleep in my wet clothes, how do i know this? i know this because i woke up at 6am to change because i was still wearing everything wet and i was freezing cold!!!! UNLESS IT HAPPENED AGAIN??? i guess we will never know:) it will remain a mystery.
so hopefully tonight we will have a calm night here in the loft in durham. we like calm nights.
love,
ellen
we have been having trouble with the air in our loft. it is either freezing cold or we turn it off and it is like 100 degrees in here. of course we are here while durham is hitting record highs. it is horrible and i never go outside (which makes for super, long days)
here's a story for you all...i guess last night i was back to my complaining self when ryan came into bed. as some of you know i have been having difficulty remembering how things happen to me at night. well last night was one of them. ryan came to bed and the bed was soaking wet, as was i. there are only a couple of options in my head of course of what could have happened. 1.) i broke a fever 2.) i dumped a whole bottle of water on me from the nightstand because i was hot and thought i was at the beach 3.) i took another shower without my dad or Ryan knowing or WITH all of my clothes on 4.) i had 4 blankets on me or 5.) i wet myself
i would really like to think it wasn't the 5th especially since the top of my sweatshirt was wet but since I was blamed that it may be a possibility i will be honest and include it. and to add, that is pretty gross then if ryan didn't change me and slept right next to me:)
but while there is major commotion between ryan and i because i am soaking wet and apparently i am not really useful with helping me get new clothes on so late at night. i think i just kept telling him to "change me". i really do not remember this happening at all and apparently ryan felt after my tantrum i could sleep in my wet clothes, how do i know this? i know this because i woke up at 6am to change because i was still wearing everything wet and i was freezing cold!!!! UNLESS IT HAPPENED AGAIN??? i guess we will never know:) it will remain a mystery.
so hopefully tonight we will have a calm night here in the loft in durham. we like calm nights.
love,
ellen
Wednesday, August 15, 2007
progressing
first, the 'medical stuff'.
ellen had another appointment with dr. gollob today to determine whether she would start treatment on monday. she had blood work done as well as a chest x-ray. the x-ray showed that there has been no new spread of the disease which seems to indicate that the treatment is working. her red blood cell count is slightly down, and may require a transfusion, but is nothing to be alarmed about. she didn't have to have the fluid removed from her stomach because it had dissipated over that last few days (which she was very happy about). all of her other levels were normal - oxygen, white blood cell, liver function.
dr. gollob told us that her creatnine count (that is the kidney number) is now down to 2. while this is certainly an improvement, it is still abnormal and needs to come down to 1.4. he explained that if she started a treatment before her kidneys were fully recovered, they might have to abort the treatment before another round was completed. that would defeat the purpose of having time in between rounds to recover. so, right now she is scheduled to start treatment on monday, august 27th.
i have been relegated to explanation duty so i will leave the personal correspondence to ellen. i hope all is well with everyone. thank you for the continued support and good thoughts.
-ryan
i had to let ryan explain all the medical stuff. i think i know what i am talking about but then come to find maybe not so much:) my dad, ryan and i went this morning and let me tell you...ryan and i haven't seen the light of day before 10am lately so 7am came early this morning. i was very anxious sitting and waiting. finally we got called back, everything was going well until ryan had to tell dr. gollob of the few stitches i had still in my back from my chest tube. he did not get a very good "look" earlier this morning from me. up on the table i went to have the stitches removed. i was not a happy camper. now i know i would have had to have them removed...but if you know me...i MUST prepare for these sorts of appointments and i had no time to prepare.
as soon as we got home i slept the entire day away and i'm sure tired now so i'm sure bedtime is soon around the corner. i try to fight it some at night though.
so, as of now, i start treatment on monday, august 27 then the following week to 2 weeks later i will have my tests run, such as the pet scan, mri, ct, to see how the cancer is reacting to treatment. if it is working then i will go back on treatment in the middle of september and then off again for a week or so and then back on. right now i am hopeful to be home in the middle-towards end of october. but of course it can be sooner. we talked today about trying to get me home for a week or so in between treatments but i don't really think i could make the trip. i am pretty exhausted all the time and just don't feel. for as much as i want to come home i don't know my body can do it. flying is out of the question due to germs. we will just have to wait to see. i am starting to learn i need to adjust to life in durham for another couple of months.
but overall, today was such a good day with the doctor. he seemed confident with waiting until august 27 for treatment. my dad mentioned i was going to be his miracle patient and dr. gollob said i already formed that description with him from that horrible night when they didn't think treatment was going to work on me. i have come a long way since that. i KNOW it is all the prayers, thoughts and positive energy being sent my way.
i appreciate everything from everyone. i must say one thing though...i sincerely apologize to you that have not received a thank you card in the mail yet...they are coming! i have been really slow because i have had trouble writing and typing after my treatment. i am trying to get the grasp of everything now but i am still pretty slow and it's frustrating!
i just want everyone to know how much i appreciate everything you have done for me. i have so many people out there thinking of me and it just helps me get through each day knowing all the support i have. i know if i didn't have the outreach of support i would not be where i am right now. i know this. i couldn't have made it. i will forever be in debt to you all for all you have done. i can not wait for this to be over even though the road ahead is still long! the day i return home will be the best day.
thank you all for everything. i truly don't think you will ever understand how much it means to me and my entire family! you get me through and you probably don't even know it!
with love,
ellen
ellen had another appointment with dr. gollob today to determine whether she would start treatment on monday. she had blood work done as well as a chest x-ray. the x-ray showed that there has been no new spread of the disease which seems to indicate that the treatment is working. her red blood cell count is slightly down, and may require a transfusion, but is nothing to be alarmed about. she didn't have to have the fluid removed from her stomach because it had dissipated over that last few days (which she was very happy about). all of her other levels were normal - oxygen, white blood cell, liver function.
dr. gollob told us that her creatnine count (that is the kidney number) is now down to 2. while this is certainly an improvement, it is still abnormal and needs to come down to 1.4. he explained that if she started a treatment before her kidneys were fully recovered, they might have to abort the treatment before another round was completed. that would defeat the purpose of having time in between rounds to recover. so, right now she is scheduled to start treatment on monday, august 27th.
i have been relegated to explanation duty so i will leave the personal correspondence to ellen. i hope all is well with everyone. thank you for the continued support and good thoughts.
-ryan
i had to let ryan explain all the medical stuff. i think i know what i am talking about but then come to find maybe not so much:) my dad, ryan and i went this morning and let me tell you...ryan and i haven't seen the light of day before 10am lately so 7am came early this morning. i was very anxious sitting and waiting. finally we got called back, everything was going well until ryan had to tell dr. gollob of the few stitches i had still in my back from my chest tube. he did not get a very good "look" earlier this morning from me. up on the table i went to have the stitches removed. i was not a happy camper. now i know i would have had to have them removed...but if you know me...i MUST prepare for these sorts of appointments and i had no time to prepare.
as soon as we got home i slept the entire day away and i'm sure tired now so i'm sure bedtime is soon around the corner. i try to fight it some at night though.
so, as of now, i start treatment on monday, august 27 then the following week to 2 weeks later i will have my tests run, such as the pet scan, mri, ct, to see how the cancer is reacting to treatment. if it is working then i will go back on treatment in the middle of september and then off again for a week or so and then back on. right now i am hopeful to be home in the middle-towards end of october. but of course it can be sooner. we talked today about trying to get me home for a week or so in between treatments but i don't really think i could make the trip. i am pretty exhausted all the time and just don't feel. for as much as i want to come home i don't know my body can do it. flying is out of the question due to germs. we will just have to wait to see. i am starting to learn i need to adjust to life in durham for another couple of months.
but overall, today was such a good day with the doctor. he seemed confident with waiting until august 27 for treatment. my dad mentioned i was going to be his miracle patient and dr. gollob said i already formed that description with him from that horrible night when they didn't think treatment was going to work on me. i have come a long way since that. i KNOW it is all the prayers, thoughts and positive energy being sent my way.
i appreciate everything from everyone. i must say one thing though...i sincerely apologize to you that have not received a thank you card in the mail yet...they are coming! i have been really slow because i have had trouble writing and typing after my treatment. i am trying to get the grasp of everything now but i am still pretty slow and it's frustrating!
i just want everyone to know how much i appreciate everything you have done for me. i have so many people out there thinking of me and it just helps me get through each day knowing all the support i have. i know if i didn't have the outreach of support i would not be where i am right now. i know this. i couldn't have made it. i will forever be in debt to you all for all you have done. i can not wait for this to be over even though the road ahead is still long! the day i return home will be the best day.
thank you all for everything. i truly don't think you will ever understand how much it means to me and my entire family! you get me through and you probably don't even know it!
with love,
ellen
Tuesday, August 14, 2007
tuesday night
another day passes...still not much change with me. just sleep.
my mom left this morning and my dad flew in today to visit. tomorrow is our doctor's appt. and all of my lab and tests. i am feeling anxious and nervous.
i am starting to feel like i am never leaving this loft. it's just a horrible feeling but i am trying to remain strong and positive! i am trying to allow myself to enjoy the sleep. i just want to get treatment started again so all the cancer cells can be killed.
everyone have a nice evening, we should have more details tomorrow evening.
love,
ellen
my mom left this morning and my dad flew in today to visit. tomorrow is our doctor's appt. and all of my lab and tests. i am feeling anxious and nervous.
i am starting to feel like i am never leaving this loft. it's just a horrible feeling but i am trying to remain strong and positive! i am trying to allow myself to enjoy the sleep. i just want to get treatment started again so all the cancer cells can be killed.
everyone have a nice evening, we should have more details tomorrow evening.
love,
ellen
Monday, August 13, 2007
Monday Evening
well first and foremost, i was so excited to finally see a response again from DR we thought you were banned from writing on the site and it broke my heart. i always laugh all the way through your comments. so you better keep them coming! i expect them. i understand there is major competition with our yards...now only if we can get the wood burning family to join in for a nice yard. they cramp all the style in the neighborhood.
today was another usual day. i developed a severe headache again this afternoon and it has finally subsided for a little bit. of course, i'm worried it's spreading to my brain. i think it will be best when i'm back in the hospital getting my treatment. right now my mind is wondering around a million times a day thinking of the what if's. i shouldn't have time for that in my daily life. but it is amazing how long days are just sitting around.
i was going to try to walk down the hall tonight with my walker...yes... for those that don't know... i have a walker that helps me get around. i feel like an old fart but this is part of it. i may just walk around the loft tonight, that helps too.
ryan finally got his new wedding band today. it came into jared. for those that didn't know...it got stolen at the hospital 2 weeks ago in the restroom. not sure what someone wants with a plain wedding band but it was gone so a"few dollars later"...ryan has a new band. he loves it so that is all that mattered.
another good thing that happened today was with the north canton chamber. we can not thank the north canton chamber of commerce enough for the small display they are going to set up at their booth for our art at the msf. ryan spoke with jan today to go through it. it is so kind of you to think of us while we are out of town. it's so exciting to us! thank you so much!
hope everyone had a happy monday.
today was another usual day. i developed a severe headache again this afternoon and it has finally subsided for a little bit. of course, i'm worried it's spreading to my brain. i think it will be best when i'm back in the hospital getting my treatment. right now my mind is wondering around a million times a day thinking of the what if's. i shouldn't have time for that in my daily life. but it is amazing how long days are just sitting around.
i was going to try to walk down the hall tonight with my walker...yes... for those that don't know... i have a walker that helps me get around. i feel like an old fart but this is part of it. i may just walk around the loft tonight, that helps too.
ryan finally got his new wedding band today. it came into jared. for those that didn't know...it got stolen at the hospital 2 weeks ago in the restroom. not sure what someone wants with a plain wedding band but it was gone so a"few dollars later"...ryan has a new band. he loves it so that is all that mattered.
another good thing that happened today was with the north canton chamber. we can not thank the north canton chamber of commerce enough for the small display they are going to set up at their booth for our art at the msf. ryan spoke with jan today to go through it. it is so kind of you to think of us while we are out of town. it's so exciting to us! thank you so much!
hope everyone had a happy monday.
Sunday, August 12, 2007
sunday evening
well i am not feeling well at all tonight. we tried almost everything to get me to not throw up. it's all worked so far and hopefully that will continue.
monica, justin and kelly were here for the afternoon today. monica brought up her dog winston to the loft. he is so cute and i absolutely loved him. it was nice to have him around. monica-he is very trained and so spoiled:)
i thank you three for visiting all weekend. it was great seeing you!
my mom is leaving tomorrow and ryan and i will have a day to ourselves until my dad flies in on tuesday. I will be happy when some of the fighting stops about my eating and sleeping habits. sometimes being out of the hopstial is worse than being in the hosptial! i am anixious to start back on treatment.
hope everyone had a nice weekend.
monica, justin and kelly were here for the afternoon today. monica brought up her dog winston to the loft. he is so cute and i absolutely loved him. it was nice to have him around. monica-he is very trained and so spoiled:)
i thank you three for visiting all weekend. it was great seeing you!
my mom is leaving tomorrow and ryan and i will have a day to ourselves until my dad flies in on tuesday. I will be happy when some of the fighting stops about my eating and sleeping habits. sometimes being out of the hopstial is worse than being in the hosptial! i am anixious to start back on treatment.
hope everyone had a nice weekend.
Saturday, August 11, 2007
saturday
well i must say i have enjoyed reading many of the posts lately but i think the first comment i must say is that lanza "you need to learn to keep your top on" maybe that could be a new years resolution or something? you really need to work on that!
well today was another productive day. monica, justin and kelly came in to see me this weekend and ryan's friends dan and valene came in as well. we all hung out all day except when ryan went to lunch with them and i took another nap. i am really tired tonight. hours of visitors take alot out on me lately. i hate that as i love to have visitors. i'll get better soon enough though.
ryan is at dinner tonight so my mom and will plan on playing some games until i go to bed. it helps calm me down!
i hope everyone had a nice saturday and enjoy the rest of your weekend!
well today was another productive day. monica, justin and kelly came in to see me this weekend and ryan's friends dan and valene came in as well. we all hung out all day except when ryan went to lunch with them and i took another nap. i am really tired tonight. hours of visitors take alot out on me lately. i hate that as i love to have visitors. i'll get better soon enough though.
ryan is at dinner tonight so my mom and will plan on playing some games until i go to bed. it helps calm me down!
i hope everyone had a nice saturday and enjoy the rest of your weekend!
Friday, August 10, 2007
nothing new to report
good evening,
today was a very unproductive day for me. i did visit again with my cousins for a short while and then went straight to sleep again for the afternoon. as you can tell i am a very boring person these days. i woke up for the mail today which is one of my favorite times of the day. i can not thank you all enough for all the cards and gifts. i love receiving everything. i keep all of my cards in a box i decorated by my bed and re-read them all the time!
thank you all and hopefully i will have more news tomorrow or in the upcoming days that isn't boring! i did receive connect 4 from ryan's friends today (along with a ton of other stuff, thank you SO much) and i believe we will play that tonight if i feel alright. games will help pass the time some more than just watching tv.
love you all,
today was a very unproductive day for me. i did visit again with my cousins for a short while and then went straight to sleep again for the afternoon. as you can tell i am a very boring person these days. i woke up for the mail today which is one of my favorite times of the day. i can not thank you all enough for all the cards and gifts. i love receiving everything. i keep all of my cards in a box i decorated by my bed and re-read them all the time!
thank you all and hopefully i will have more news tomorrow or in the upcoming days that isn't boring! i did receive connect 4 from ryan's friends today (along with a ton of other stuff, thank you SO much) and i believe we will play that tonight if i feel alright. games will help pass the time some more than just watching tv.
love you all,
Thursday, August 9, 2007
Medical Update
good evening everyone
i am sad to report that i did not get my stomach drained today. dr. gollob's pa called this morning at 9am and said that they are extremely understaffed in the radiology department and can not do it until next wed. at 1pm. i have decided i will be patient and wait. of course they gave me the option of going to the er to have it drained but that totally sucks so i will tough it out until i can't anymore. as long as i don't eat too much i am alright. i just tell people to take a good look at my belly because this is what i would look like if i was ever pregnant:)
good news is my kidney count is 2.9 down from 3.5 on monday afternoon. my other counts, such as white blood cell and red blood cell count are excellent and i still do not need a blood transfusion. my liver counts were excellent too. the pa said i was i good shape at this point. i will have more lab work next wed. morning with dr. gollob. hopefully the results just continue to get better.
today has been a very productive day too....my cousin, tara and her husband stopped by this morning to see me for a couple of hours on her to way to visit her aunt. then my uncle chuck and cousins, heath and ross stopped in briefly on their way to a finishing trip in nags head. i was in bed right after they all left around 12:30pm. i sure do not have the energy anymore. today nap time was from 12:30 to 5:30 so i hope there is some good tv on to keep me entertained tonight!
then again, i'll just check my blog all night:)
love, ell
i am sad to report that i did not get my stomach drained today. dr. gollob's pa called this morning at 9am and said that they are extremely understaffed in the radiology department and can not do it until next wed. at 1pm. i have decided i will be patient and wait. of course they gave me the option of going to the er to have it drained but that totally sucks so i will tough it out until i can't anymore. as long as i don't eat too much i am alright. i just tell people to take a good look at my belly because this is what i would look like if i was ever pregnant:)
good news is my kidney count is 2.9 down from 3.5 on monday afternoon. my other counts, such as white blood cell and red blood cell count are excellent and i still do not need a blood transfusion. my liver counts were excellent too. the pa said i was i good shape at this point. i will have more lab work next wed. morning with dr. gollob. hopefully the results just continue to get better.
today has been a very productive day too....my cousin, tara and her husband stopped by this morning to see me for a couple of hours on her to way to visit her aunt. then my uncle chuck and cousins, heath and ross stopped in briefly on their way to a finishing trip in nags head. i was in bed right after they all left around 12:30pm. i sure do not have the energy anymore. today nap time was from 12:30 to 5:30 so i hope there is some good tv on to keep me entertained tonight!
then again, i'll just check my blog all night:)
love, ell
an artful life
ellen and i have had some interest in our business, an artful life. some of you are aware of our plans and some are not. i thought i might shed some light on this endeavor.
our idea started when ellen was going through radiation treatment at aultman hospital in canton. as a way of relieving stress, ellen decided she wanted to paint. after completing two works, one for our house and one for her mother's, our neighbor, christy revoldt, commented on how good the paintings were. she suggested that we do some more and sell them. before we even finished talking about it, ellen and i came up with the same idea. we were going to sell the paintings and give half of the proceeds to the north canton medical foundation.
during one of our meetings with ellen's oncologist at aultman, dr. trehan, we opened the conversation about setting up a partnership. dr. trehan was blown away and loved the idea immediately. she promised to pass our idea along and have someone involved with the foundation e-mail us to go over details. within a day we were meeting with the board of the foundation. they explained the foundation and how it would help patients who may be struggling with bills, etc. they wanted us to be spokespersons and we set up a partnership with them over the next several days.
after a few meetings we came up with a name, an artful life, and a basic outline for our business. we are going to create original paintings and craftwork and give half of the proceeds directly to the foundation. we tentatively set up showings and were going to have a booth at the north canton main street festival.
soon after applying for our llc (limited liability company) and making our business legitimate, a test revealed that ellen's cancer had spread through her body.
so our venture is on hold. sort of. we have continued to receive requests for work and are happy to do them, as long as everyone understands that it may be some time.
everyone who has already inquired about a painting, or if this is the first you are hearing about this, please call or email me and i will start to maintain a list. i have all of the information for sizing, color, pricing, etc. available for anyone interested.
ryan gray
330.417.0968
AnArtfulLife@gmail.com
our idea started when ellen was going through radiation treatment at aultman hospital in canton. as a way of relieving stress, ellen decided she wanted to paint. after completing two works, one for our house and one for her mother's, our neighbor, christy revoldt, commented on how good the paintings were. she suggested that we do some more and sell them. before we even finished talking about it, ellen and i came up with the same idea. we were going to sell the paintings and give half of the proceeds to the north canton medical foundation.
during one of our meetings with ellen's oncologist at aultman, dr. trehan, we opened the conversation about setting up a partnership. dr. trehan was blown away and loved the idea immediately. she promised to pass our idea along and have someone involved with the foundation e-mail us to go over details. within a day we were meeting with the board of the foundation. they explained the foundation and how it would help patients who may be struggling with bills, etc. they wanted us to be spokespersons and we set up a partnership with them over the next several days.
after a few meetings we came up with a name, an artful life, and a basic outline for our business. we are going to create original paintings and craftwork and give half of the proceeds directly to the foundation. we tentatively set up showings and were going to have a booth at the north canton main street festival.
soon after applying for our llc (limited liability company) and making our business legitimate, a test revealed that ellen's cancer had spread through her body.
so our venture is on hold. sort of. we have continued to receive requests for work and are happy to do them, as long as everyone understands that it may be some time.
everyone who has already inquired about a painting, or if this is the first you are hearing about this, please call or email me and i will start to maintain a list. i have all of the information for sizing, color, pricing, etc. available for anyone interested.
ryan gray
330.417.0968
AnArtfulLife@gmail.com
Wednesday, August 8, 2007
it's ellen again...
i decided i would continue to try to write as long as i am feeling alright. today isn't the best "feel good" day but i am working through it. my stomach is growing as the days pass and i am going to need to have it drained again. it is not a horrible sign to have this done but it will be painful for me. dr. gollob is having this done tomorrow (thursday). i am patiently waiting for a time though.
my next round of treatment is to begin on monday, august 20. i will report at 8:30am. next week on wed. i will meet with dr. gollob again and have a chest ct to make sure all is well still. we are waiting another week yet for treatment to get my strength up some. the wait is also due to the fact that i had such a difficult time from the chemo switch the first time. i commented to him that i spoke with my oncologist, dr. trehan yesterday in canton and told her that i thought i felt crappy from radiation but it was absolutely nothing compared to what i experienced here. i told dr. gollob i didn't even remember much of anything from that week and he said i was really, really ill from it. it's good though he said how well i can bounce back. that was encouraging to hear!
i know ryan and my mom are unhappy seeing me not feel well. my dad escaped this for a few days. he needed to go back home for work related reasons so he left yesterday and is back in North Canton until next week when i start treatment again. i'm sure many have already seen him out and about especially since he basically lives at the ymca. i know he needs the rest away from me though! as you all know, i can be very wearing on others. my high energy can be quite tiring. if you mount that with not feeling "great" i can be quite unbearable at times:) i try to be loving and snuggle though:)
jo ann and hilary flew in today for the afternoon to visit with me. they had the pleasure of arriving in time for my 10am doctor's appt. so they went too. what troopers. it was so great to see them and i got many good laughs from them. i'm sure you were all talked about at some point today, haha. just kidding. they were nice enough to let me take a much needed nap too. i just feel like an infant because i can't make it through the day without a nap. it's discouraging. i can't sleep through the night either but a good bowl of cheerios helps me in the middle of the night if needed.
i was SO excited today when hilary handed me my bracelet!!!! thank you so much christy, megan, and annie. you 3 are the best to me and always have been. it means to much, you have no idea. it's hard to believe to me that someone would actually want to wear a bracelet with my name on it! i am so honored.
also, i read the email from jen sedlak about the tour de vaugh on 18th (jen you put the 25th but i think it's the 18th?) thank you to those that are going to ride at 11am in my name. i am going to miss that weekend since i had worked hard with jo ann already on the planning for the msf. i hope it goes off well as i'm sure it will! plus those who knew before i got sick, i loved to cycle with my mom and christy.
now my next step, instead of worrying about all the fun stuff i am missing at home... i need to get ryan to the store to get some craft materials so i can start some requested projects. i am developing a growing list for paintings and it's SO exciting for me. you all have no idea how much it keeps me going to get an email that you want something. keep it coming:) ncmf loves it too since they receive 50% of the the proceeds. that is my whole reason behind our company, an artful life, llc. to help others going through cancer. many people much more severe or even less severe situations then me need help and this is my way to do my part....painting and craft work. it is my reason for living!!!
again, thank you all for the support, love, guidance, visits, etc. it all means more than words can ever explain. i LOVE getting comments on the blog. i am constantly checking it...ryan always says "again...i doubt anyone wrote yet (again)". i just laugh and tell him to leave me alone i have nothing else right now:)
oh and sorry it's so long....i get excited to be able to write!
lots of love,
ell
my next round of treatment is to begin on monday, august 20. i will report at 8:30am. next week on wed. i will meet with dr. gollob again and have a chest ct to make sure all is well still. we are waiting another week yet for treatment to get my strength up some. the wait is also due to the fact that i had such a difficult time from the chemo switch the first time. i commented to him that i spoke with my oncologist, dr. trehan yesterday in canton and told her that i thought i felt crappy from radiation but it was absolutely nothing compared to what i experienced here. i told dr. gollob i didn't even remember much of anything from that week and he said i was really, really ill from it. it's good though he said how well i can bounce back. that was encouraging to hear!
i know ryan and my mom are unhappy seeing me not feel well. my dad escaped this for a few days. he needed to go back home for work related reasons so he left yesterday and is back in North Canton until next week when i start treatment again. i'm sure many have already seen him out and about especially since he basically lives at the ymca. i know he needs the rest away from me though! as you all know, i can be very wearing on others. my high energy can be quite tiring. if you mount that with not feeling "great" i can be quite unbearable at times:) i try to be loving and snuggle though:)
jo ann and hilary flew in today for the afternoon to visit with me. they had the pleasure of arriving in time for my 10am doctor's appt. so they went too. what troopers. it was so great to see them and i got many good laughs from them. i'm sure you were all talked about at some point today, haha. just kidding. they were nice enough to let me take a much needed nap too. i just feel like an infant because i can't make it through the day without a nap. it's discouraging. i can't sleep through the night either but a good bowl of cheerios helps me in the middle of the night if needed.
i was SO excited today when hilary handed me my bracelet!!!! thank you so much christy, megan, and annie. you 3 are the best to me and always have been. it means to much, you have no idea. it's hard to believe to me that someone would actually want to wear a bracelet with my name on it! i am so honored.
also, i read the email from jen sedlak about the tour de vaugh on 18th (jen you put the 25th but i think it's the 18th?) thank you to those that are going to ride at 11am in my name. i am going to miss that weekend since i had worked hard with jo ann already on the planning for the msf. i hope it goes off well as i'm sure it will! plus those who knew before i got sick, i loved to cycle with my mom and christy.
now my next step, instead of worrying about all the fun stuff i am missing at home... i need to get ryan to the store to get some craft materials so i can start some requested projects. i am developing a growing list for paintings and it's SO exciting for me. you all have no idea how much it keeps me going to get an email that you want something. keep it coming:) ncmf loves it too since they receive 50% of the the proceeds. that is my whole reason behind our company, an artful life, llc. to help others going through cancer. many people much more severe or even less severe situations then me need help and this is my way to do my part....painting and craft work. it is my reason for living!!!
again, thank you all for the support, love, guidance, visits, etc. it all means more than words can ever explain. i LOVE getting comments on the blog. i am constantly checking it...ryan always says "again...i doubt anyone wrote yet (again)". i just laugh and tell him to leave me alone i have nothing else right now:)
oh and sorry it's so long....i get excited to be able to write!
lots of love,
ell
Tuesday, August 7, 2007
a note from ellen
hi everyone,
i decided since i was just sitting on the couch i would do the entry for the blog today and give ryan a much deserved break. although i must be honest and say he is on his way to mcdonalds to get me a big mac. it was that or cherrios for dinner but the commercial for mcdonalds won out!
i have slept most of the day to try to rest up for my visit tomorrow from hilary and jo ann. they are flying in together for the day just to visit! i am so excited to see familiar faces again just even for the day!!! i know they will supply me with hours of good laughs and stories that i have missed recently.
we do have a doctors appt. tomorrow morning at 10am for some lab work and I am sure we will find out at that time when I may go back in the hospital. i was hopeful to keep this moving so i can go on my 2 month stint to come back home. i hope to be home by the end of august or else we are going to have to start a serious rotation because ryan will be back full time and so will my mom. i hate not having ryan here and don't want to do this without him down here. probably because he bends over backwards for me and has seen me sicker than anyone (including my parents have). there is something to be said about that. we will just have to wait and see though. i have too many other things to think about than that. i need positive things to keep happening with my health!
you don't realize until a situataion like this occurres how much you need someone in your life that you love so much. i used to think before that i could handle it all and it didn't matter if it was just me. i have no idea what the heck i was thinking? obviously i am young and do not have any clue what it means until now. i do know now though.
hope all is well with everyone. please still keep me in the loop about stuff. i still LOVE to hear stories and what to know what is going on your lives so please make sure you still let me know.
lots of love,
ellen
i decided since i was just sitting on the couch i would do the entry for the blog today and give ryan a much deserved break. although i must be honest and say he is on his way to mcdonalds to get me a big mac. it was that or cherrios for dinner but the commercial for mcdonalds won out!
i have slept most of the day to try to rest up for my visit tomorrow from hilary and jo ann. they are flying in together for the day just to visit! i am so excited to see familiar faces again just even for the day!!! i know they will supply me with hours of good laughs and stories that i have missed recently.
we do have a doctors appt. tomorrow morning at 10am for some lab work and I am sure we will find out at that time when I may go back in the hospital. i was hopeful to keep this moving so i can go on my 2 month stint to come back home. i hope to be home by the end of august or else we are going to have to start a serious rotation because ryan will be back full time and so will my mom. i hate not having ryan here and don't want to do this without him down here. probably because he bends over backwards for me and has seen me sicker than anyone (including my parents have). there is something to be said about that. we will just have to wait and see though. i have too many other things to think about than that. i need positive things to keep happening with my health!
you don't realize until a situataion like this occurres how much you need someone in your life that you love so much. i used to think before that i could handle it all and it didn't matter if it was just me. i have no idea what the heck i was thinking? obviously i am young and do not have any clue what it means until now. i do know now though.
hope all is well with everyone. please still keep me in the loop about stuff. i still LOVE to hear stories and what to know what is going on your lives so please make sure you still let me know.
lots of love,
ellen
Monday, August 6, 2007
home.. kind of
they told us yesterday that if her tests continued to improve, she would be discharged today. her kidney function improved for the third day in a row and the number came down to 3.2. still far from a preferred 1.4, but we're getting there. her white blood cell count made a dramatic rise as well.
we left the hospital around 2 this afternoon to head back to our temporary home here in durham. we all took a much needed nap as soon as we got back and settled and now we're trying to decide what to get for dinner.
ellen is happy to have some time to relax. i'm sure the apartment will be more conducive to good sleep than her room right next to the nurse's station.
it is worth mentioning again and again... we appreciate the gifts and cards so very much. please remember, though, that she can't have flowers around.
we left the hospital around 2 this afternoon to head back to our temporary home here in durham. we all took a much needed nap as soon as we got back and settled and now we're trying to decide what to get for dinner.
ellen is happy to have some time to relax. i'm sure the apartment will be more conducive to good sleep than her room right next to the nurse's station.
it is worth mentioning again and again... we appreciate the gifts and cards so very much. please remember, though, that she can't have flowers around.
Sunday, August 5, 2007
a note from ellen
first, i would like to thank everyone for reading about me and my battle with this disease. this weekend i was fortunate enough to have many visitors: my friends, amber, amina, angie, natalie, jen and ashley, my aunts kathy and barb, my uncle chuck, christy and annie, ryan's parents and sister jaime, todd and kylene, diane and, of course, my parents don and suzy. it was so nice to see everyone and try to get some good laughs because it is hard to stay in bed all day.
there is a very high chance that i will be able to go to the apartment tomorrow. i am really getting anxious about starting some new art projects and hope i might be able to do a few before my next round of treatment begins.
keep writing me. i love you all very much.
ellen
there is a very high chance that i will be able to go to the apartment tomorrow. i am really getting anxious about starting some new art projects and hope i might be able to do a few before my next round of treatment begins.
keep writing me. i love you all very much.
ellen
storming back
ellen sat in a chair for a while today.
this is significant because she has now spent 2 entire weeks more or less shackled to her bed. while sitting up in a chair falls under the category of daily minutia for most of us, ellen is using it as a springboard for the possibility of getting out of here tomorrow.
if that's not enough...
her white blood cell count has increased. she had a fever spike last night which the nurses seemed to think was an indication that the neulasta injection she received earlier in the week is finally starting to kick in. her temperature returned to normal and has held there throughout the day.
her kidney function improved again. she dropped another few tenths of a point. this is especially important because now the pain and anxiety medicine won't take so long to clear through her system.
she is eating a little more too. today she had part of a sandwich and her favorite, a frosty and fries from wendy's. of course we would like her to attempt foods with more nutritional value, but the items from wendy's were far superior to the krispy kreme and, of course, calories are calories.
keep the thoughts and prayers coming. put extra emphasis on the part about her getting to go home. she would really like that.
this is significant because she has now spent 2 entire weeks more or less shackled to her bed. while sitting up in a chair falls under the category of daily minutia for most of us, ellen is using it as a springboard for the possibility of getting out of here tomorrow.
if that's not enough...
her white blood cell count has increased. she had a fever spike last night which the nurses seemed to think was an indication that the neulasta injection she received earlier in the week is finally starting to kick in. her temperature returned to normal and has held there throughout the day.
her kidney function improved again. she dropped another few tenths of a point. this is especially important because now the pain and anxiety medicine won't take so long to clear through her system.
she is eating a little more too. today she had part of a sandwich and her favorite, a frosty and fries from wendy's. of course we would like her to attempt foods with more nutritional value, but the items from wendy's were far superior to the krispy kreme and, of course, calories are calories.
keep the thoughts and prayers coming. put extra emphasis on the part about her getting to go home. she would really like that.
Saturday, August 4, 2007
very good news
today was not so much about the quantity of good news, but the quality.
first, a brief history. ellen has been in acute renal failure since she completed her first round of treatment. this applies to the function of the kidneys. a normal, healthy number value for this function is around 1. when it starts to climb there is reason to be concerned. ellen's had climbed steadily to a 4 as of yesterday.
this morning it was 3.7.
while these medical terms may be lost on most of you (and all of us here, too), it has been the one thing that the doctors have been most concerned with. therefore, the news this morning is cause for celebration. we need the level to come back down so that she can safely have an mri. we need her to have an mri so that she can start her next round of treatment.
some of ellen's girlfriends came into durham last night. they came by late to say good night but have spent all of today at her bedside. amber, amina, angie, ashley, jen and natalie, thank you.
she has been steadily increasing her energy and has been eating more. dr. gollob targeted monday for her to return to the apartment.
keep the prayers and thoughts coming. she's only just begun to fight.
first, a brief history. ellen has been in acute renal failure since she completed her first round of treatment. this applies to the function of the kidneys. a normal, healthy number value for this function is around 1. when it starts to climb there is reason to be concerned. ellen's had climbed steadily to a 4 as of yesterday.
this morning it was 3.7.
while these medical terms may be lost on most of you (and all of us here, too), it has been the one thing that the doctors have been most concerned with. therefore, the news this morning is cause for celebration. we need the level to come back down so that she can safely have an mri. we need her to have an mri so that she can start her next round of treatment.
some of ellen's girlfriends came into durham last night. they came by late to say good night but have spent all of today at her bedside. amber, amina, angie, ashley, jen and natalie, thank you.
she has been steadily increasing her energy and has been eating more. dr. gollob targeted monday for her to return to the apartment.
keep the prayers and thoughts coming. she's only just begun to fight.
Friday, August 3, 2007
a shower
ellen wanted a shower this morning.
actually, she wanted a shower the second she got that tube removed from her ribcage. she was pretty exhausted and had to settle for this morning. not only did she get a shower, which is quite the feat after more than a week in a hospital bed, she practically bounded out of bed to do it. she is happy to be rid of the bed-head but was infinitely disappointed to find out that she wasn't allowed to shave. her platelets are still a bit low and the nurse advised against using a razor. no matter, that's what long pants are for.
after her shower and a short nap she had another trick up her sleeve. they call it a swiss walker - some kind of contraption that allows her to lean her elbows on a shelf and helps her walk around. it would be more accurate to report that she helped IT go for a walk. it's 310 feet around the 9100 unit here on the 9th floor. she handled it with a smile.
the rest of the day she spent visiting with everyone and catching a few naps... much deserved naps.
actually, she wanted a shower the second she got that tube removed from her ribcage. she was pretty exhausted and had to settle for this morning. not only did she get a shower, which is quite the feat after more than a week in a hospital bed, she practically bounded out of bed to do it. she is happy to be rid of the bed-head but was infinitely disappointed to find out that she wasn't allowed to shave. her platelets are still a bit low and the nurse advised against using a razor. no matter, that's what long pants are for.
after her shower and a short nap she had another trick up her sleeve. they call it a swiss walker - some kind of contraption that allows her to lean her elbows on a shelf and helps her walk around. it would be more accurate to report that she helped IT go for a walk. it's 310 feet around the 9100 unit here on the 9th floor. she handled it with a smile.
the rest of the day she spent visiting with everyone and catching a few naps... much deserved naps.
Thursday, August 2, 2007
turning the corner
we had a few good things happen today.
they planned the procedure for the removal of her chest tube for 2:30. they were going to take it out and replace it with the catheter that i mentioned before so that she would have more freedom. instead, they found that she didn't have as much fluid as they expected and decided to do without the catheter. now she has neither.
they also sent her down for an ultrasound of her kidneys. dr. gollob visited us with those results saying that there was no blockage. this is a good thing.
other than that everything is maintaining, which is to say, things are still not getting worse. we are still planning on another few days for her to fully recover to the point that the doctors are confident that she can handle being outside the care of the hospital.
yesterday she had no changes, good or bad. today she had TWO good changes.
they planned the procedure for the removal of her chest tube for 2:30. they were going to take it out and replace it with the catheter that i mentioned before so that she would have more freedom. instead, they found that she didn't have as much fluid as they expected and decided to do without the catheter. now she has neither.
they also sent her down for an ultrasound of her kidneys. dr. gollob visited us with those results saying that there was no blockage. this is a good thing.
other than that everything is maintaining, which is to say, things are still not getting worse. we are still planning on another few days for her to fully recover to the point that the doctors are confident that she can handle being outside the care of the hospital.
yesterday she had no changes, good or bad. today she had TWO good changes.
Wednesday, August 1, 2007
no changes - which is a good thing
ellen spent today alternating between sleeping and talking to her many visitors. she also had a go at the physical therapy doing a few leg lifts and arm curls.
dr. gollob came to see us for a few minutes and told us that everything (kidney and liver function, white blood cell count) is about the same. this is not necessarily good news but is certainly not bad news. for the moment, no change is FAR better than any declining test results.
her immediate goal is to get to the point where she can comfortably get out of bed and go home. tomorrow she is having a procedure to remove the chest tube and to replace it with a pleurex catheter. this is a much smaller tube that she will be able to tape flat to her side. it will be less of an encumbrance and she will be able to release pressure when she feels it necessary. the doctors are thinking she will be able to go home saturday.
she was able to eat a little more today, some yogurt and chicken soup (not quite a krispy kreme but we'll take it).
she is in good spirits and is happy to have all of the visitors. these things can only help.
important note: when i say 'home', i mean the apartment we have here in durham... just to clear up any confusion.
dr. gollob came to see us for a few minutes and told us that everything (kidney and liver function, white blood cell count) is about the same. this is not necessarily good news but is certainly not bad news. for the moment, no change is FAR better than any declining test results.
her immediate goal is to get to the point where she can comfortably get out of bed and go home. tomorrow she is having a procedure to remove the chest tube and to replace it with a pleurex catheter. this is a much smaller tube that she will be able to tape flat to her side. it will be less of an encumbrance and she will be able to release pressure when she feels it necessary. the doctors are thinking she will be able to go home saturday.
she was able to eat a little more today, some yogurt and chicken soup (not quite a krispy kreme but we'll take it).
she is in good spirits and is happy to have all of the visitors. these things can only help.
important note: when i say 'home', i mean the apartment we have here in durham... just to clear up any confusion.
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