thank you

i have nothing else for the moment but, from the depths of my heart, thank you all.

NEW UPDATE

we wanted to shoot a quick message out to let everyone know that we are now not going to chicago but philadelphia. i got a call late today and was told that facility can help and treat me so off we go still just a different direction.

please keep us in your thoughts and prayers. we are still suppose to be leaving tomorrow but due to the change in location i have been warned it could be a day or so longer. I have been alright with that so far since i know they will try to help but i think tomorrow morning at 10 when they call me i will know for sure how i feel if they tell me it's on wed. like it is supposed to be.

love,
ellen

new chapter

first we apologize for such a long delay of not respondning on the blog. we have been trying to get things in order since i returned from duke last thursday. i still am weak but do not have to use the wheelchair or walker that we rented. i did getting off the plane last week, which i can not thank enough to revoldts as i was able to fly home on a private plane. i do not think i would have been able to make it commerical or in the car until now. i am working hard on gaining weight back and hate to look in the mirror still so hence i'm not very clean as i avoid showers:)

our lastest plan is we... are going to chicago on tuesday. technically, zion, illinois, is about 30 miles outside of chicago and is home to the midwest branch of the cancer treatment centers of america.

www.cancercenter.com

the cancer treatment centers of america focus on all aspects of a persons battle with cancer. they feature an integrative approach that includes chemotherapy and radiation treatments, surgery, nutritional therapy, naturopathic medicine and spiritual support among others.

i really don't have too many details at this point. she will be evaluated on wednesday, when we get there. i know i will be staying there as well for either an inpatient or outpatient treatment. it's pretty cool. i am trying to remain positive as i did prior to our departure to duke.

we will continue to follow the blog now but the last week has been so very difficult-still is so we were quiet.

thank you for all the support and please please please keep the hope and prayers coming my way. i am really in need.

love, ellen

brief update

i went to pick up the report from dr. masters today. he gave me 20 pages on diet, health and lifestyle changes that ellen will have to make. he included foods that she should be eating and foods that she should NOT be eating. we have some work to do to build her up but she is ready for it.

we are still trying to figure out the visits. for the most part, ellen is still very weak and very tired so it is hard for her to stay up. stay tuned though, she is feeling better every day and it won't be long before she will be ready to see you all.

sorry for the delay

we arrived safely from north carolina but have been very tired, as you might imagine.

i know all of you have been eager to hear about our visit with dr. masters. it went well. he tested ellen with electrodes placed on different pressure points. after 10 minutes, he did the same thing and compared the results. ellen is showing a sever deficiency in her kidney and liver functions, her filter organs. she also has a problem with a particular pancreatic enzyme that he called the "eater-uppers". the cancer cells secrete a poison as they die off. this pancreatic enzyme is supposed to eat that poison as it appears. it's not doing so. these three things are what is stopping her body from healing.

he prescribed a supplement and a detoxifying liquid that she takes several times a day. his intention is to "build her up" before he attacks the cancer itself.

the way he explained what is going on in her body is so simple, so reasonable. it just made sense. he is fairly confident that he can help her. she is going to be changing her diet in addition to the supplements, so that will make a great deal of difference also.

we are still very encouraged about the new course of action. ellen is still very sick from the chemo but is fighting hard. she wants to feel better so that she can see everybody who has followed her battle so diligently.

please feel free to call us, 330.361.4141, and leave a message so that we may start to map out some visits. also, please don't be offended if i don't call back right away. she gets tired very easily and it will be hard to have many visitors for some time. we appreciate your patience but she IS eager to see everyone.

still coming home

i promised ellen that i would post every day, even if there isn't much to say. we are still coming home tomorrow. a friend of the family was kind enough to loan us his personal jet so we won't have to deal with baggage claim, security, etc. we will be in north canton around 11:30 tomorrow.

we can't thank everyone enough for the continued outpouring of support. in our darkest hours you shined a brilliant, white light on us. WE can see... thanks to all of YOU.

we will see you soon.

we are coming home

the tone of this post may seem very matter-of-fact. it is. we decided that everyone who has shown us the support that we need, and has followed us through every step of this journey, deserves to know what is happening. they deserve the care and respect that they have shown us.

ellen had an mri of her brain last night because the doctors had become suspicious of her inability to kick the nausea that has been so persistent. this morning, hillary, one of dr. gollob's p.a.'s, came in with the results.

the cancer has spread.

the mri revealed that she has at least 4 small lesions on various portions of her brain. soon thereafter, we met with a radiation oncologist that was able to better explain what had happened. when cancer metastasizes (enters the blood stream) it basically has free reign over the body. even in the face of intense chemotherapy, it was able to make its way back into her head.

later that afternoon we met with the lead radiation oncologist at dumc. he said that he was going to start a course of radiation that would last 10-14 days. the overall cure rate, however, went from nearly 5% to non-existent. this was taking precedence over the disease in the rest of her body but ellen was ready to do whatever it took. you would never expect anything less.

you would also not expect what came next.

dr. gollob visited later (unfortunately, while i was picking don and diane up at the airport). he told ellen, suzy and my mother, lola, that he was advising against the radiation. the treatment was clearly not doing what it was supposed to do and whatever little time the radiation provided would not outweigh the added discomfort it would cause. he was suggesting that she discontinue treatment all together.

we feel that we have made the correct decisions about her health care every step of the way. obviously, what is considered "modern medicine" is not the answer. whether it's her chemical makeup or some other reason, the chemotherapy has not had the desired effect.

so, we are going another direction.

almost immediately ellen rejected dr. gollob's diagnosis as the end of her options. she contacted a holistic doctor that she had seen prior to one of her other treatments. after talking with him our optimism is renewed. we are invigorated. he is very excited to see her and to get started again. he feels, quite confidently, that he can be of great help to her.

the details of this course of action will follow. right now, though, we are preparing to come home. i ask that everyone be patient as we adjust and settle in. ellen and i are beyond excited to see everyone but we do have certain things that require our attention first.

please make no mistake. this is not a negative outcome. we see it has the natural course of events that will lead her to full health through holistic healing.

we are more encouraged than ever.

still in the my room

i have not been able too write lately due to my memory and spelling, it is very hard for me to try to deal with this but i will write as soon as i am capable.

I JUST WANT TO TELL MY HUSBAND OF ALMOST 3 YEARS HAPPY 28TH BIRTHDAY!!! HAPPY BIRTHDAY RYAN, YOU DESERVE A GOOD ONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

---------------

last night was a little rough again. we are still trying to get ellen's dosages correct. today the doctors decided to put her back on a schedule so that she wouldn't have to fight so hard to get things back under control. she continues to try to eat. with the nausea such a nuisance, it is difficult.

she had an mri of her brain today. dr. gollob ordered it as a precaution because she hasn't been able to keep the nausea down. he also mentioned that, since she will be staying, he might be able to move the cat scan up to tomorrow.

rough night

we had a little trouble getting the pain and nausea medication right, last night. fortunately, the doctors and nurses put their heads together and fixed the issue. ellen had a great day, relatively speaking of course.

we played uno, because she won't let me teach her poker, and she went for a couple laps around the unit.

she still wants to go home tomorrow but because she has had so little to eat she is still a little weak. we have the cat scan on wednesday and may stay in the hospital until then.

nothing on tv

i asked ellen to help me with something to write this evening.

nothing really happened again today. she slept most of the time. i took another liter off her stomach earlier in the day. when she was awake she had plenty to drink and a few bites of a ham & cheese sandwich. she went on a short wheelchair ride but felt nauseous so we had to cut it short.

that brings me to the title of this post. when i said, "i don't know what to write. can you help me?" she said, "just write that there isn't anything on tv."

done.

another day

my intention, of course, is to keep everyone apprised of ellen's condition, her day to day life and so on. i am aware, though, that my posts seem to be getting shorter and shorter. the reason for that is simple: every day is about the same.

this is good news.

every day she does a little more in preparation for her release. i took another liter off her abdomen and after that she walked TWO laps around the unit. her heart rate was a little high (she walks a too fast, her condition be damned) but her oxygen was a very strong 94%. she was awake and talked with us quite a bit more, too. we didn't hear her creatnine level today which can be easily interpreted to mean that it didn't change. her blood counts are still low, expectedly, but, all things considered, she is further along at this point after the treatment than during the last course.

still progressing

ellen made more strides today.

her greatest stride, perhaps, was that she slept through the night but when she woke up, she kept her mother and me in conversation through most of the morning. THEN, she decided that she wanted to go for a walk. she was able to take a few more bites of food today and has been drinking plenty of fluids.

speaking of fluids, thanks to the pleurx catheter, i was able to remove another liter from her abdomen. she seems to feel better, and more importantly, breathe better when the fluid is removed. now i can take fluid off as her stomach indicates.

dr. gollob was in and said that she will, most likely, need to stay through the weekend. he wants her to be able to move around on her own without fear of a tumble. he mentioned her blood counts were still a little low and that was also a deciding factor. her creatnine is holding steady around 1.9.

she is scheduled for a cat-scan on wednesday. barring any setbacks, she will have the test that will determine the rest of her treatment.

pleurx catheter

i named this post "pleurx catheter" because that is the only thing that distinguished yesterday from today.

she was given platelets at 5 this morning to make sure she was prepared for the procedure and went downstairs around 8. she was put under mild sedation and came out about an hour later. she spent most of the day sleeping. after one of the p.a.'s came and showed me how to release the fluid, we removed another 3 liters, ellen woke up for a little while. she had a few bites of a sandwich and talked to her mom and me for a bit. since then she has been resting comfortably.

we are hoping that she can come around in the next few days and start to get her energy and strength back. keep thinking about her and sending any extra energy you might have. she needs all that she can get.

turning the corner, again

today started much like the last few days. ellen slept. dr. gollob stopped early in the afternoon. he said that her blood counts were down but he doesn't think that they have hit their low yet. he expects them to come down a little more in the next day or so. her creatnine count stayed steady at 1.8.

we talked about the possibility of the plurex catheter. this is the temporary tube inserted into her abdomen so that she can release fluid whenever pressure builds. he said he would talk with the other doctors and make a decision later in the day. his p.a. later informed us that she would be having the procedure done tomorrow.

about the same time, she woke up, completely, for the first time in a few days. she was able to sit up, drink some water, eat A jello cube and talk to her mother and me for a while. it was nice to have her awake and lucid for a bit. of course, as much as she wanted to fight it, the pain and nausea came back and she needed some medication.

she is sleeping comfortably, again.

continuing progress

we met with dr. gollob early this afternoon. ellen's creatnine count is up to 1.8. that is up again from yesterday but it still isn't rising at the alarming rate that it did during the last course of treatment. he told us that all of her blood counts are down, slightly, but that they aren't down further than expected. everything is following the same trend that it did during the last course. the good news, though, is that nothing seems as severe as it was before.

over the next few days, if the trends hold, she should gradually feel better and get some energy back. hopefully she can get out of bed and go for a walk, maybe have something to eat. this time, however, we will discourage her from a krispy kreme for her first meal. it will be exciting again, when she says that she's hungry, but we won't make the same mistake again.

the plan going forward, as dr. gollob explained, is to help ellen recover from the treatment and allow her body to rebound. in a few weeks she will have a cat-scan to determine the effect that the treatment is having on her body. at that time, it will be decided whether she will continue on with this type of chemotherapy.

keep sending good thoughts.

recovering

i really wish i had something to say this evening. fortunately (or unfortunately, depending on how much you enjoy my writing) there isn't a lot going on. ellen has been resting comfortably. don, suzy, chuck, connie and i sat in her room and chatted on and off for most of the day while she slept.

her creatnine count went up, slightly, to 1.6. this is above normal but still within reason and CERTAINLY better than the skyrocketing numbers from before. dr. gollob is planning on seeing us tomorrow. i'm sure he will be able to shed some light on the next step.

hope everyone is well and continuing to send their positive thoughts and energy ellen's way.

last day

ellen completed her second round of treatment today. her uncle chuck and aunt connie came in today. they spent a long time visiting with her (well, at least when she was awake). she slept, again, for most of the day and she had another paracentesis. they removed ANOTHER 3+ liters from her abdomen. she was far under the influence of the many narcotics and wasn't awake for any of the procedure. that's a good thing.

dr. gollob dropped all of the different forms of chemo down to 4 days with the hopes that she will recover more quickly.

her creatnine count is up to 1.5. this is only slightly over the high threshold of 1.4. we're hoping that it doesn't make a drastic upswing like it did during the last course of treatment. overall, she handled this round much better than the last one. again, i credit this to the adjustments that the doctors made in all of her different medications. she seems much more comfortable and hasn't shown the side effects as strongly as before.

that is a very good thing.

almost finished

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.

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".

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.

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.

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

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

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.

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

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

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

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!

live at the msf

hi all.

we are online and watching. hope everyone has a moment to say hi.

~ryan and ellen

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.

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

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

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

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.

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.

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!

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,

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

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

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

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

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.

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

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.

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.

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.

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.

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.

a quick note

the bit about the treatment possibly starting again in a few days is inaccurate. dr. gollob's assistant was in to see ellen this morning and mentioned it, only briefly, as a possibility. i'm sure that i read a little too much into it.

dr. gollob himself came in later and was pleased with ellen's mental progress. we are still in a holding pattern, so to speak, because we still need to see progress in her liver and kidney functions. the best case would be that everything improves and she is able to start the second course in 2 weeks.

a couple more notes:

-because of ellen's low white blood cell count, she is not allowed to have flowers in the room. she loves and appreciates what has been sent already but asks that you not send anymore.

-if you are sending another package, the address at the apartment will work fine. someone is always stopping there to pick up cards and packages... she may even be going back there in a day or so.

fighting chance

things are not progressing exactly as we expected. dr. gollob was in yesterday to update us as to ellen's continuing condition and said that the chemo is not having the desired effect. the combination of ellen's persistent nausea, the reaccumulation of fluid in her abdomen, the lowered kidney and liver function and low white blood cell count all indicate that the cancer may be spreading in spite of the intense treatment.

her condition is as serious as it can be.

rather than dwell on the many negatives, though, we are focusing on the possibility that she is able to rebound in the next day or so. she needs to gain energy again so that she will be ready for another round of treatment which they may start as early as thursday or friday.

at the moment they have completely discontinued her meds... all of them. she is back to the ellen we all know and love, lucid, hungry and a little bossy. she asked for a muffin to eat. it was too dry so we went with a krispy kreme glazed washed down with some gatorade. she is totally ready for the upcoming days and is ready to prove that she can rally and be ready for the next week of treatment. she is a fighter, as if we all didn't already know that.

i battled back and forth throughout the night deciding whether to write a post or not. this morning she asked me to. she wanted everyone to know what she is going through and is more than willing to fight. she needs all of your thoughts and prayers more than ever.

the first week is over

no matter what you think you know about the side effects of chemo, unless you have seen it first hand or been through it yourself, you have no idea. i have paid close attention to what all of the doctors told us to expect. i have done my own research, reading almost everything i can find. i thought i would be prepared for what she would go through after her first round of treatment was over... not even close.

the past 36 hours have been the very definition of misery for ellen. she goes through spells of extreme overheating, then chills. she has been vomiting consistently since about 4 pm yesterday. she hasn't eaten in a week so, without being too graphic, there isn't much coming up except bile. the act is excruciating to watch and i can't imagine what it is like to experience first hand.

she has been restless to the point that neither of us have slept for 2 days. the doctors are hesitant to sedate her anymore, but she has been so confused, they are giving her an mri tonight to rule out a spread to the brain.

the fluid draining from her lung has slowed considerably but the fluid in her abdomen has slowly reaccumulated. they are considering a semi-permanent tap so that she will be able to relieve the pressure on her own. the chest tube should come out tomorrow.

the more i think about this and reread it, the more i realize that there are no words that come close to describing what she is going through.

please keep thinking about her praying for her.

four liters

at first the doctors told us that her stomach seemed full and bloated because all of the fluid on her lung was pushing her diaphragm down. that made sense at first but after several days of fluid draining off her lung i was no longer satisfied with that explanation. after some prodding from myself, the doctors decided to do an ultrasound of her stomach. sure enough, they found a large pocket of fluid.

four liters later, she is feeling better. well, she is probably feeling fine from the extremely potent drugs they gave her prior to the procedure, but she was able to crack a smile and reach down to feel after i told her what they did.

that was the action for the day. she continues to sleep 90% of the time. when she does wake up for a little bit she asks about her blog. i start reading and within a few seconds she is back asleep again.

sleep is good though.

much needed rest

today was mostly uneventful, not to imply that it was easy, however. the discomfort from the chemotherapy has increased as the pain from the chest tube has decreased. the barrage of pills and fluids have finally slowed ellen down. she sleeps most of the day trying to keep from getting sick and she is not eating much.

we met with a few doctors today including dr. gollob and everyone said that she is doing well. the fluid from her chest has slowed considerably and they think that the tube may come out on sunday or monday.

todd arrived late last night and was here first thing this morning. even though she has a very difficult time mustering any kind of conversation, she loves the company. of course she wants to make sure that everyone is entertained and says, repeatedly, "let me nap for 20 more minutes, then i'll be able to talk." the chemo has other plans.

contact info

perhaps i should have mentioned this contact information earlier.

apartment:
206 n. duke st. apt. 215
durham, nc 27701

hospital:
duke university medical center
room 9122

ryan's cell number:
330.417.0968

ellen's cell phone (which isn't checked as often but she likes seeing that she has messages nonetheless):
330.704.7172

catching up on rest

ellen slept soundly for the second night in a row - a welcomed change from the nights spent trying to catch her breath.

her pain from the chest tube has subsided, for the most part, but the tube itself is causing other problems. due to a small leak she has to have the dressing changed every few hours. other than being quite a production, with her numerous tubes, she handles it well enough and it actually allows gravity to help coax the fluid out. the surgeon who performed the procedure looked at it and told us that it was fine and it wasn't cause for concern. he might think otherwise if he had to lay in a pool of fluid from his chest, but i digress.

one of dr. gollob's pa's (physician's assistant) came by today to talk to us about ellen's red cell count. i'm not sure what the unit of measure is but a healthy number is in the 40's. ellen's is about 32 and if it drops below 30 she will need a blood transfusion. the pa assured us that this is not out of the ordinary and won't cause her any discomfort.

i'm sure that i will say this many, many times but thanks to everyone for the cards, flowers, e-mails, gifts, blog posts and calls, all of which keep her going. there is a reason why we try to surround ourselves with good people... when you need them, they are there.

first day of treatment

ellen started her treatment today. all things considered, she is in very good spirits and has been awake most of the day talking to the battery of doctors that visit her. she has been given all of the various drugs for the day and will be on a 24 hour drip of interleukin.

tiffany, ellen's cousin, inquired about the drugs that she will be on. they are as follows for anyone else who may be interested:

-24 our drip of interleukin
-interferon
-temodar in pill form
-cisplatin
-vinblastin
as well as some maintenance drugs like:
-tylenol
-zofran and phenergan for nausea
-24 hour drip of saline

she met with the physical therapist and attempted to get out of bed for a little bit. her spinning head dictated otherwise. currently she is speaking with the nutritionist about getting something better than fried chicken, fried potatoes and chocolate cake. while this may sound delicious (in a hospital or not) ellen is trying to eat healthy so she was given an alternative menu.

not that anybody had any doubt but they are taking extremely good care of her here.

p.s.
angie visited last night, surprising ellen with a beautiful scrap book of all her girlfriends. she, of course, loved it and had a good laugh at all of the old pictures. thank you very much, angie, and to everyone else who helped in any way with that.

now they're the changing hurdles

i don't really know if this qualifies as 'good luck' as much as 'different luck'.

ellen had her procedure to remove the fluid from around her right lung today. they removed two and a half liters... that's another two and a half liters.

the chest tube that she has in place now travels between her ribs and is constantly draining, not to mention that it is brutally painful for her. the tube's diameter is similar to that of a garden hose and is temporarily sutured to her side.

after she came out we were greeted by one of dr. gollob's colleagues, dr. dunphy. he was very informative having a background in thoracics. he relayed to us from the doctor that did the procedure that ellen had more nodules on her lungs than they first thought. not that the cancer is 'spreading', necessarily, but that there are more nodules in a certain space than the ct scan first disclosed.

this prompted dr. gollob to change his plan of attack. he wants to move forward with a treatment that has more potential for initial response. it is exactly the first phase of our other option, the 'chemo-switch'. this is not the experimental treatment, however, as it won't include the second phase (the experimental portion), only a repeat of the first. in addition to this change, ellen is scheduled to start tomorrow, the 25th. she is now back on the pace that we had originally planned for. this is pleasing to ellen as she was very apprehensive to wait around a week for treatment to begin.

we are all very excited for the change in plans. we were told from the start that we couldn't really make a 'wrong' choice when deciding between treatment plans. now ellen's body has adjusted and made the decision for her.

hurdles on top of hurdles on top of hurdles...

we were up early this morning but were slightly more fortunate and made it to 4 am this time. ellen was unable to breath easily and we would later find out that the fluid on her right lung had reaccumulated. we went through the same process with the e.r. and they admitted her quickly. that was were the similarities to the first episode ended, however.

dr. gollob's assistant came in around 8 am and told us that the fluid had accumulated at such a rate that she would most likely not be able to start treatment as originally planned. she was going to have a ct scan to see exactly how much fluid she had and they would determine what steps would need to be taken. we waited around most of the day while they pumped ellen full of morphine, adavan, zofran and host of other drugs in an attempt to keep her comfortable. a torturous day, really, that we spent in total limbo. we had no idea whether she would have the procedure tonight or tomorrow, whether it would interfere with her treatment, etc.

dr. gollob and a pulmonary specialist finally came to see us around 8 pm. they had decided that she would have a procedure done tomorrow morning to insert a chest tube and drain the fluid more permanently. a small incision will be made in her rib cage where they will insert a vacuum tube that should drain the fluid rather quickly. then they will spray in talc (yes, plain talc) to 'glue' the lung's outer wall to the chest cavity membrane where the fluid had accumulated. the tube will stay in for another day or two to make sure that all of the fluid is removed. start to finish, the procedure should take over an hour and she should feel relief almost immediately after coming out of the anesthesia.

this is our new main objective. we were assured that the delay would not aggravate her condition and dr. gollob has decided that they need to get this under control before he will start her on the interleukin-2. if things work as planned, she will be discharged on thursday and spend the extended weekend at home. the thought is that she needs to be physically sound when starting the treatment the following monday, the 30th.

right now she is resting comfortably.