I managed to get them to give me infusion #3 of the Yervoy today. (very exciting stuff). They did the typical blood tests then sent me on to the chemo room. When I arrived at the chemo room it was packed! Apparently they were very behind today. There wasnt a free seat anywhere. I waited 45 minutes before they could find a spot for me. I then got hooked up without any problems. I was in a chair I swear was meant for a 7ft tall person. The nurse had to bring a foot stool over as my feet were hanging, no way I could reach the ground. It was the most uncomfortable chair ever. But hey, Im not going to complain. It didnt take me too long to realize that I had forgotten my headphones. So no movies for me. I ended up playing solitaire and looking at pinterest the entire time.
I got home and I was sleepy and hungry. I had brought a few snacks with me, but missed lunch. Next time Ill remember to pack more food. Normally it doesnt take as long as it did today. I would have been fine, but missing lunch killed me. I was sleepy due to the benadryl they hook you up to, and not sleeping the night before. Had illness issues. Not sure if Yervoy related, or not but didnt get any sleep. So tonight I plan on going to bed early!
So far no new side effects. Im managing the ones I do have. (Im beginning to have a mini pharmacy in my house". Hopefully we can get thru the next 3 weeks with nothing new. We just have to make it to the last infusion, then a new pet scan! I will make it to the 4th infusion. They sat many dont make all 4, but I have high hopes.
February 27, 2013
February 23, 2013
Its the weekend!
The weekend is finally here! Not that it matters much to me. Ive spent all week in bed trying to get better. Our goal is to get well enough that they will allow me to get my Yervoy infusion on wednesday. Ive remained drugged up all week hoping and praying this stuff helps. Im still not close to feeling normal. Too much talking, or movement causes me to go into a coughing fit, and I still wheeze a bit when breathing. I have 4 days to get to feeling better. Lets hope that happens.
Due to me being ill, we dont really have any plans this weekend. We are staying in. I do have dinner with my mom tonight. My little sister is going to bring her hair supplies and hopefully give me a haircut. Not that I have much to cut. Its growing back slowly. I still have a giant bald spot on the side of my head from radiation. Im beginning to think its not going to grow back. (that was a possible side effect) Not to be vain or anything, but Im thinking about getting extensions in my hair. It would cover the bald spot up, and give me some length. Ill take anything to have a real hairstlye these days. The only issue with extensions is that if I end up having chemo Ill loose what I have left of my hair, and then the money spent on extensions is wasted. So Im trying to hold off until we get my scans in a few weeks, and know for sure if I have to have chemo or if we dodged that bullet. On the other hand, Im not even sure if I qualify yet for extensions. I think my hair is still too short.
I know its silly to talk about hair, when all the serious medical stuff is going on. Im just ready to somewhat look like myself again. Between the weight gain due to the steroids, and other medication Im on, and the lack of hair, Im not recognizing the person in the mirror. Thats why Ive decided to try to do something about it. Or at least look into doing something about it. :)
So we have a play pen for the baby. It allows him to crawl around and play, yet keep him in a baby safe zone. He discovered that one of the panels is broken, and he can escape! Guess Im going to have to fix it. Really puts a kink in things when your kid is able to get out of baby jail.
Due to me being ill, we dont really have any plans this weekend. We are staying in. I do have dinner with my mom tonight. My little sister is going to bring her hair supplies and hopefully give me a haircut. Not that I have much to cut. Its growing back slowly. I still have a giant bald spot on the side of my head from radiation. Im beginning to think its not going to grow back. (that was a possible side effect) Not to be vain or anything, but Im thinking about getting extensions in my hair. It would cover the bald spot up, and give me some length. Ill take anything to have a real hairstlye these days. The only issue with extensions is that if I end up having chemo Ill loose what I have left of my hair, and then the money spent on extensions is wasted. So Im trying to hold off until we get my scans in a few weeks, and know for sure if I have to have chemo or if we dodged that bullet. On the other hand, Im not even sure if I qualify yet for extensions. I think my hair is still too short.
I know its silly to talk about hair, when all the serious medical stuff is going on. Im just ready to somewhat look like myself again. Between the weight gain due to the steroids, and other medication Im on, and the lack of hair, Im not recognizing the person in the mirror. Thats why Ive decided to try to do something about it. Or at least look into doing something about it. :)
February 20, 2013
Night 1 on the good meds
I almost forgot how it is to sleep a few hours in a row. I managed to get a few consecutive hours of sleep last night. I was still up multiple times. Seems like while this stuff makes my cough go away, it doesnt necessarily mean sleep. Just means Im loopy, and not coughing. The stuff makes me out of it enough that I cant take it and be alone with Elliot. I just dont trust it. It has the potential to knock me out, and with a crawling baby on my hands its just not wise.
Im still feeling like total crap today. Woke up and cant really speak above a whisper. This means that by the end of the day my voice will be completely gone. I also notice the wheezing when I do breath more. The doctor mentioned it yesterday, now its more noticeable to me this morning. Hopefully the antibiotics will kick in today and help. Scary to hear wheezing noises when you breath, but hey Im not coughing nearly as much! Not sure if thats better or worse. Better for me as in it doesnt hurt, but is it truly better?
Its almost comical again to see me take my daily meds. I have a mini drug store to take every morning. I swear its getting hard to remember which pill does what. Add in the 4 new medications they gave me yesterday and its like heres a bucket of pills. Good luck. I guess they never said having cancer is fun.
Eric half jokingly said hes going to buy me a box of surgical masks for when I go out in public. He doesnt want me to get sick again. Its just too hard on my body, as my system is shot. I told him that if it came down to my need/want to get out of the house vs wearing a mask, Id just stay home. After having to wear one at the doctors office Ill pass. They are hot and a pain to breathe in. House arrest for me then. Me and my lack of immune system will just stay home. Maybe I should make Eric bathe in antibacterial stuff when he gets home daily from work. Wonder if that helps? Maybe, I could get one of those hazmat shower things for him....ahhh I think Im going back to bed.
Im still feeling like total crap today. Woke up and cant really speak above a whisper. This means that by the end of the day my voice will be completely gone. I also notice the wheezing when I do breath more. The doctor mentioned it yesterday, now its more noticeable to me this morning. Hopefully the antibiotics will kick in today and help. Scary to hear wheezing noises when you breath, but hey Im not coughing nearly as much! Not sure if thats better or worse. Better for me as in it doesnt hurt, but is it truly better?
Its almost comical again to see me take my daily meds. I have a mini drug store to take every morning. I swear its getting hard to remember which pill does what. Add in the 4 new medications they gave me yesterday and its like heres a bucket of pills. Good luck. I guess they never said having cancer is fun.
Eric half jokingly said hes going to buy me a box of surgical masks for when I go out in public. He doesnt want me to get sick again. Its just too hard on my body, as my system is shot. I told him that if it came down to my need/want to get out of the house vs wearing a mask, Id just stay home. After having to wear one at the doctors office Ill pass. They are hot and a pain to breathe in. House arrest for me then. Me and my lack of immune system will just stay home. Maybe I should make Eric bathe in antibacterial stuff when he gets home daily from work. Wonder if that helps? Maybe, I could get one of those hazmat shower things for him....ahhh I think Im going back to bed.
February 19, 2013
Heavy duty cough meds...
I always know that going to my oncologist is an all day event. Even when they say it should be just a quick appt, buckle up, because its going to be a while. They did lab work, and a chest x-ray quickly after we arrived. Then we proceeded to wait an hour before even being called back to see the doctor! (crazy to wait that long) With my lovely hacking cough, I had the pleasure of wearing a mask for the entire visit. I didnt want to chance getting someone sick. Let me tell ya, those masks get HOT. I was so ready to loose it, but meanwhile, Ill be responsible.
The good news is my labs look good, and my chest x ray still looks the same. (tumor and all) They were checking for fluid etc, since Ive been sick. The doctor heard wheezing sounds in my lungs so hes treating me for that. So hers what I get: antibiotics, heavy duty cough meds, steroids, and some other med that Im not exactly sure what it does. The doctor said my immune system isnt working right, due to the Yervoy. So Im sick with a cold or whatever, and my body was already struggling with the side effects from my last Yervoy infusion. So Im currently buckets of fun. To be honest this cough syrup has me super loopy right now. (probably not the best idea to type an update while on this med, but oh well). This is the first time in DAYS that Ive not been hacking up a lung. Im feeling pretty awesome right now. Soon Ill crask and sleep.
So the doctor told us if Im not feeling better next week they will postpone my Yervoy infusion. He wants my system to feel back to normal before we proceed. Im crossing my fingers that I get this illness under control so that we dont have to postpone. We really need to keep this on schedule for it to be the most effective. So lots of rest for me for the next 7 days. Eric asked the doctor about our plan for after the yervoy. As of right now its staying the same. Im interested to see the next PET scan and see if the tumor has grown, or anything new has come up. A lot will be decided in just 4 weeks. Now that we are getting close to the end of the Yervoy Im starting to get nervous. So many things will be decided Im anxious for it to get here so we have our plan in play. With that Im calling it a night. This cough stuff /meds is no joke.
The good news is my labs look good, and my chest x ray still looks the same. (tumor and all) They were checking for fluid etc, since Ive been sick. The doctor heard wheezing sounds in my lungs so hes treating me for that. So hers what I get: antibiotics, heavy duty cough meds, steroids, and some other med that Im not exactly sure what it does. The doctor said my immune system isnt working right, due to the Yervoy. So Im sick with a cold or whatever, and my body was already struggling with the side effects from my last Yervoy infusion. So Im currently buckets of fun. To be honest this cough syrup has me super loopy right now. (probably not the best idea to type an update while on this med, but oh well). This is the first time in DAYS that Ive not been hacking up a lung. Im feeling pretty awesome right now. Soon Ill crask and sleep.
So the doctor told us if Im not feeling better next week they will postpone my Yervoy infusion. He wants my system to feel back to normal before we proceed. Im crossing my fingers that I get this illness under control so that we dont have to postpone. We really need to keep this on schedule for it to be the most effective. So lots of rest for me for the next 7 days. Eric asked the doctor about our plan for after the yervoy. As of right now its staying the same. Im interested to see the next PET scan and see if the tumor has grown, or anything new has come up. A lot will be decided in just 4 weeks. Now that we are getting close to the end of the Yervoy Im starting to get nervous. So many things will be decided Im anxious for it to get here so we have our plan in play. With that Im calling it a night. This cough stuff /meds is no joke.
February 18, 2013
Sickly
Sorry for the time lapse between posts. Elliot caught a cold, then promptly passed it to me. Problem with me? Now Ive been terribly sick. Thats the crummy part about being a cancer patient on an immuno therapy type drug. So Ive been in bed what feels like for days.
I have a terrible persistent cough that just wont quit. By terrible I mean stop me in my tracks, cough so hard you pray you dont pee your pants, type cough. My husband is worried this has to do with my lung tumor. (not just me simply catching a cold/flu bug) We called the doctor this morning, and hes going to see us tomorrow. They went and ordered a chest x-ray, and will run labs. What worries Eric is that nothing helps the cough. Ive tried all sorts of cough meds, cough drops etc. I cant sleep at night due to coughing up a lung. So only thing that seems to work is water, and hot tea. Im praying that the doc will be able to give me something to make it stop. I cant talk either, or a coughing fit erupts.
On top of being sick with what we hope is a bug, Ive still been having side effects from the Yervoy. (lovely) Lets just add all that together to a pretty miserable 2 weeks for me. Having to force myself to eat, and stay in bed. Im ready to just feel 'normal' again.
A brighter note!? Elliot decided to start crawling a couple days ago! So a sick mommy, and a very mobile baby. YAY! Hes decided that the entire house is game. Luckily 90% of our home had already been baby proofed. So we really only have a couple things left to do. He has made it challenging to be sick, and watching a baby run away from mommy. (he thinks hes quite comical...laughing/squealing the entire way) I guess it could be worse right? Hes quite pleased with himself when he gets where he wants to go.
Baby boy made it to the window...he LOVES being able to look outside!
I have a terrible persistent cough that just wont quit. By terrible I mean stop me in my tracks, cough so hard you pray you dont pee your pants, type cough. My husband is worried this has to do with my lung tumor. (not just me simply catching a cold/flu bug) We called the doctor this morning, and hes going to see us tomorrow. They went and ordered a chest x-ray, and will run labs. What worries Eric is that nothing helps the cough. Ive tried all sorts of cough meds, cough drops etc. I cant sleep at night due to coughing up a lung. So only thing that seems to work is water, and hot tea. Im praying that the doc will be able to give me something to make it stop. I cant talk either, or a coughing fit erupts.
On top of being sick with what we hope is a bug, Ive still been having side effects from the Yervoy. (lovely) Lets just add all that together to a pretty miserable 2 weeks for me. Having to force myself to eat, and stay in bed. Im ready to just feel 'normal' again.
A brighter note!? Elliot decided to start crawling a couple days ago! So a sick mommy, and a very mobile baby. YAY! Hes decided that the entire house is game. Luckily 90% of our home had already been baby proofed. So we really only have a couple things left to do. He has made it challenging to be sick, and watching a baby run away from mommy. (he thinks hes quite comical...laughing/squealing the entire way) I guess it could be worse right? Hes quite pleased with himself when he gets where he wants to go.
February 11, 2013
Wishes
The phrase "be careful what you wish for" comes to mind from my experience this weekend. We spent some of this weekend at our inlaws creek house, with family. We had a lovely time, had a good time seeing everyone etc. Until you add in my cranky child. My baby boy LOVES his crib. I never thought I would be able to get him to nap in his crib. I mean, until a month or so ago he just would not nap anywhere but our arms. Now? Its an entire new ball game.
We have quite the set schedule for him. He wakes up at 5-530, naps at 8, up then naps again 1ish, then bed at 6-7. Well, mr elliot just didnt understand this weekend why we didnt have a crib to put him in when he demanded a nap. :) on my...Ive never seen that kid so angry. He was like "HELLOOOOO naptime!!!!!" the pack n play was a joke, the only thing that worked? laying him down on our bed, and WHAM out like a light. This boy LOVES a norma mattress. So to sum all of this up, I guess I need to be careful what I wish for. I was pleading with him over the holidays to nap on his own, and now Ive creadted a little boy who only wants to nap in a nice comfy crib. I guess it could be worse :)
Update:
My health this weekend is okay. Still fighting with the side effects but they seem to be settling down with my meds. All food in general just doesnt sound good. So Im trying to stay hydrated, and just eat what I can. We are taking it easy at the house today, as Elliot has a bit of a cold, that I think I may be getting. Still really tired all the time, but thats what happens when your body is fighting against itself. My next lab appointments are for Feb 20th, unless something creeps up between now and then. They are now just letting me watch myself and if I think the effects are getting worse Im supposed to call in. I will continue to keep everyone updated.
We have quite the set schedule for him. He wakes up at 5-530, naps at 8, up then naps again 1ish, then bed at 6-7. Well, mr elliot just didnt understand this weekend why we didnt have a crib to put him in when he demanded a nap. :) on my...Ive never seen that kid so angry. He was like "HELLOOOOO naptime!!!!!" the pack n play was a joke, the only thing that worked? laying him down on our bed, and WHAM out like a light. This boy LOVES a norma mattress. So to sum all of this up, I guess I need to be careful what I wish for. I was pleading with him over the holidays to nap on his own, and now Ive creadted a little boy who only wants to nap in a nice comfy crib. I guess it could be worse :)
Update:
My health this weekend is okay. Still fighting with the side effects but they seem to be settling down with my meds. All food in general just doesnt sound good. So Im trying to stay hydrated, and just eat what I can. We are taking it easy at the house today, as Elliot has a bit of a cold, that I think I may be getting. Still really tired all the time, but thats what happens when your body is fighting against itself. My next lab appointments are for Feb 20th, unless something creeps up between now and then. They are now just letting me watch myself and if I think the effects are getting worse Im supposed to call in. I will continue to keep everyone updated.
February 7, 2013
Newest Lab tests in
....Drum roll please........
And its official my side effects are all due to the Yervoy treatment. They tested me for all strains of bacterial infections etc, and all came back negative. So its official, Im having the lovely side effects from my infusions. Of which, this morning are back to very unpleasant. This was to be expected after getting my infusion yesterday. They said it could go back to bad, before starting to clear up again. Ive decided my insides hate me, and are trying to eat themselves. (I know its a lovely picture)
Water is terrible for me, and gatorade is starting to get old. Crazy how water makes things worse. Food makes things worse. Smelling food makes it worse. Eric has managed to scrub my house clean so I cant smell any whiff of food or anything that will set me off. Crazy how the smell of cleaner seems to help.
My arms are black and blue from the injections, as I dont have a port. They just draw blood then give me an iv. So I get the pleasure of being stuck 2x every time I go in there. I guess it could be worse.
Now to keep my crankyness down to a minimum, hard to be in a good mood when feeling like this. Just feels like a never ending cycle right now.
And its official my side effects are all due to the Yervoy treatment. They tested me for all strains of bacterial infections etc, and all came back negative. So its official, Im having the lovely side effects from my infusions. Of which, this morning are back to very unpleasant. This was to be expected after getting my infusion yesterday. They said it could go back to bad, before starting to clear up again. Ive decided my insides hate me, and are trying to eat themselves. (I know its a lovely picture)
Water is terrible for me, and gatorade is starting to get old. Crazy how water makes things worse. Food makes things worse. Smelling food makes it worse. Eric has managed to scrub my house clean so I cant smell any whiff of food or anything that will set me off. Crazy how the smell of cleaner seems to help.
My arms are black and blue from the injections, as I dont have a port. They just draw blood then give me an iv. So I get the pleasure of being stuck 2x every time I go in there. I guess it could be worse.
Now to keep my crankyness down to a minimum, hard to be in a good mood when feeling like this. Just feels like a never ending cycle right now.
February 6, 2013
Yervoy Treatment #2 Today
We made it to the doctor today! Lab work done, weigh in, then nice visit with my oncologist. He said that hes almost 99% sure its the Yervoy causing my side effects, and not some super bacteria bug that only effects cancer patients. We are still waiting the lab results for the super bacteria, but the steriods seem to be working. This makes him believe its the yervoy. He did, however, allow us to continue treatment today.
I asked him about surgery vs radiation on my lung tumor. He said that we will re-visit the situation after our next Pet scan, but that he liked the surgery option better. With my age, and risk factors Im a better choice for surgery. There is the possibility of small cancer cells that the PET scan is not picking up, but they can see in surgery and go ahead and cut out. This seems like a better option. My doctor said that he always goes with the "what would I do for my family" option. Right now this is the way he would go. Granted we have a few more weeks (6) to think about this again. We will know more after my next pet scan in roughly 6 weeks.
So for the fun stuff! Treatment today went without any issues. IV hookups were great. They pumped me full of benadryl, saline, and Yervoy. Took forever! I did learn that the saving grace was bringing my headphones and the ipad. Watching my own movies really helped the time pass, and people tend to more ignore me. They had the cancer hope recourse people there today. They came by and offered foot massages. (I declined, I didnt want someone touching my potentially stinky feet) :) Once they filled my IV with the anti nausea meds I was feeling great. Finally ready to eat some food! By the time I got out of there I was starving and sleepy. Not a good combo for me. I really get cranky/moody with that combination. Poor Eric was a trooper though. He made me some lunch and put me down for a nap. Hes really quite patient with me.
We are still keeping an eye on me for the next little bit. They said that with my new infusion my side effects can get worse again before officially getting better. So I could be in for another few days of awesomeness. I have meds for most everything I should need. Doc said water, whiskey and coffee are my worst enemies right now, and to guzzle gatorade, and ginger ale. So this is what I will subside myself on. Crossing my fingers for a nice few days. I guess it could always be worse. At least I am here at home, and not having to worry about work (other than watching the baby, which yes is a full time job). But hey its a full time job from my couch if need be.
Thank you for all your prayers, Ive really been needing them the past few days. Good night.
I asked him about surgery vs radiation on my lung tumor. He said that we will re-visit the situation after our next Pet scan, but that he liked the surgery option better. With my age, and risk factors Im a better choice for surgery. There is the possibility of small cancer cells that the PET scan is not picking up, but they can see in surgery and go ahead and cut out. This seems like a better option. My doctor said that he always goes with the "what would I do for my family" option. Right now this is the way he would go. Granted we have a few more weeks (6) to think about this again. We will know more after my next pet scan in roughly 6 weeks.
So for the fun stuff! Treatment today went without any issues. IV hookups were great. They pumped me full of benadryl, saline, and Yervoy. Took forever! I did learn that the saving grace was bringing my headphones and the ipad. Watching my own movies really helped the time pass, and people tend to more ignore me. They had the cancer hope recourse people there today. They came by and offered foot massages. (I declined, I didnt want someone touching my potentially stinky feet) :) Once they filled my IV with the anti nausea meds I was feeling great. Finally ready to eat some food! By the time I got out of there I was starving and sleepy. Not a good combo for me. I really get cranky/moody with that combination. Poor Eric was a trooper though. He made me some lunch and put me down for a nap. Hes really quite patient with me.
We are still keeping an eye on me for the next little bit. They said that with my new infusion my side effects can get worse again before officially getting better. So I could be in for another few days of awesomeness. I have meds for most everything I should need. Doc said water, whiskey and coffee are my worst enemies right now, and to guzzle gatorade, and ginger ale. So this is what I will subside myself on. Crossing my fingers for a nice few days. I guess it could always be worse. At least I am here at home, and not having to worry about work (other than watching the baby, which yes is a full time job). But hey its a full time job from my couch if need be.
Thank you for all your prayers, Ive really been needing them the past few days. Good night.
Steriods just suck
Steroids officially suck. Just when I get weaned off of them, I get put back on them and all the good ole fun begins again. How on earth cana person be sick as a dog and GAIN weight??? This isn't any fun. They still haven't officially kicked 100% on the way in. Feeling a bit better, not near 100% or really able to keep much down. We head to the doctor in a few to see what they have to say. Still crossing my fingers that they'll let me continue the infusions. Really want to be able to get the next 3 doses down. I know its making me miserable right now, but overall this treatment is the best. (you know as long as its not killing me in other ways) Id really like to keep my liver, and insides.
Hopefully, we can get all of this under control, so that I can be back on my treadmill etc. Im hoping that all this weight gain is just the all the fluids they are pumping full of. I know I have plenty other things to complain about, yet here you see my weight pity party on screen. Come on though, I just had a baby, got all that weight off then BAM cancer drugs. Cant really blame a girl. :)
So now to get everyone around for the day at the doctors office. Ipad charged, phones charged, bag of goodies packed. Sitting in a chair that long is no fun. Its sorta like a bad day at the airport with IVs and sick people. Erics going with me to get the really fun chemo ward experience, and to talk to the doctor about my side effects. Heres to hoping for good news!
Hopefully, we can get all of this under control, so that I can be back on my treadmill etc. Im hoping that all this weight gain is just the all the fluids they are pumping full of. I know I have plenty other things to complain about, yet here you see my weight pity party on screen. Come on though, I just had a baby, got all that weight off then BAM cancer drugs. Cant really blame a girl. :)
So now to get everyone around for the day at the doctors office. Ipad charged, phones charged, bag of goodies packed. Sitting in a chair that long is no fun. Its sorta like a bad day at the airport with IVs and sick people. Erics going with me to get the really fun chemo ward experience, and to talk to the doctor about my side effects. Heres to hoping for good news!
February 5, 2013
Another Doctors Visit.
Yesterday I had the pleasure of going into the doctor for a terrible weekend of side effects. They drew blood, took all sorts of samples, then sent me right up to the chemo room for IV fluids. They found out I was dehydrated and my potassium levels were lower than they should be. I had lost a lot of potassium since the prior lab test just a few days ago. So I spent the next 3 hours or so in the room getting IV fluids and medical staff asking loads of questions.
They put me back onto high dose steroids as theyve pretty much decided its my immune system attacking my own body. None of the over the counter medicines they had me try worked, so that typically means its my own body causing the damage. (my labs will come back today or wednesday to verify this). So steroids my nightmare. I was up like clockwork again last night unable to sleep. Same story different time. But hey, I cant have my body attempting to eat/ wipe itself out.
As of this morning (Ive been up since 2) Im still not feeling great or able to keep anything down. Only thing Ive somewhat managed to keep down is the doctor prescribed gatorade, to help the potassium issue). The nurses told me I had to eat. I told them the key to not getting sick is to stop eating. They really didn't appreciate that answer very much.
We go back to the doc today for lab work. Then tomorrow is my normally scheduled lab work, doc appt, and Yervoy infusion. Eric and I are hoping they dont cancel the infusion. They can cancel it if they think the side effects are already doing too much. I can tell already that the steriods are starting to make me feel less crappy than before, so hopefully this will be enough to keep on going. We really want to be able to get all four doses of Yervoy in. It really has shown to have some good benefits if I can complete all 4 rounds. (longer life expectancy and such)
So here we are...trying to guzzle fluids, curled up on the couch watching my favorite crappy tv shows :)
On a fun note Elliot found the door stops today. Hes been trying to get to them and make them go 'BOING!!!!' hes been grabbing a toy, going over and whacking the toy on the stop. This will be just one more thing to keep him away from. YAY.
They put me back onto high dose steroids as theyve pretty much decided its my immune system attacking my own body. None of the over the counter medicines they had me try worked, so that typically means its my own body causing the damage. (my labs will come back today or wednesday to verify this). So steroids my nightmare. I was up like clockwork again last night unable to sleep. Same story different time. But hey, I cant have my body attempting to eat/ wipe itself out.
As of this morning (Ive been up since 2) Im still not feeling great or able to keep anything down. Only thing Ive somewhat managed to keep down is the doctor prescribed gatorade, to help the potassium issue). The nurses told me I had to eat. I told them the key to not getting sick is to stop eating. They really didn't appreciate that answer very much.
We go back to the doc today for lab work. Then tomorrow is my normally scheduled lab work, doc appt, and Yervoy infusion. Eric and I are hoping they dont cancel the infusion. They can cancel it if they think the side effects are already doing too much. I can tell already that the steriods are starting to make me feel less crappy than before, so hopefully this will be enough to keep on going. We really want to be able to get all four doses of Yervoy in. It really has shown to have some good benefits if I can complete all 4 rounds. (longer life expectancy and such)
So here we are...trying to guzzle fluids, curled up on the couch watching my favorite crappy tv shows :)
On a fun note Elliot found the door stops today. Hes been trying to get to them and make them go 'BOING!!!!' hes been grabbing a toy, going over and whacking the toy on the stop. This will be just one more thing to keep him away from. YAY.
February 3, 2013
Crummy Weekend
Nothing stays good for long around here. Just had a crummy weekend starting on Friday. I counted my blessings too quickly I suppose. As of friday I started getting the side effects from Yervoy. At the 24 hour mark I called the on call doctor Saturday. He wasnt as concerned as I 'thought' he should be. Told me to take over the counter medications (even after I told him that my doctor said not to, the chemo nurse said not to, AND the MANUFACTURER said not to). Luckily, I had a call in to my own doctors nurse. She called me back this morning, 48 hours after the symptoms started. She called my doctor immediately and called me back. Now what you ask? well.... Back on the steroids! yay me. Just when I got back to sleeping normall, and thought I was loosing the weight, here we go again!
So heres the plan. Tomorrow (monday) I go into the doctor for IV fluids (they assume Im dehydrated, and I likely am. Having been able to keep anything down) and blood work. Then I go back on wednesday for a follow up, and as of right now my second round of Yervoy infusion. Im hoping they dont push it off. Ive been able to get my tummy for the most part under control today. Granted, I havent really had much food. Mainly just fluids.
So here I am, Sunday night, Super Bowl night and Im at home feeling wiped. My sister in law was having a party at her house, and Im here at home trying to feel better. I just couldnt imagine going anywhere with the smell of food. Hopefully, we will get all of this under control and we can continue the infusions without any more side effects. Ive heard many different ideas on the issue of side effects. Some say its a sign its working. Since its sending my body into overdrive its proof its doing something. So I guess thats good news?
I knew I had had too many good days in a while. Just had to go and get these side effects....Just when I was starting to build up strength on the treadmill too. Baby steps....
So heres the plan. Tomorrow (monday) I go into the doctor for IV fluids (they assume Im dehydrated, and I likely am. Having been able to keep anything down) and blood work. Then I go back on wednesday for a follow up, and as of right now my second round of Yervoy infusion. Im hoping they dont push it off. Ive been able to get my tummy for the most part under control today. Granted, I havent really had much food. Mainly just fluids.
So here I am, Sunday night, Super Bowl night and Im at home feeling wiped. My sister in law was having a party at her house, and Im here at home trying to feel better. I just couldnt imagine going anywhere with the smell of food. Hopefully, we will get all of this under control and we can continue the infusions without any more side effects. Ive heard many different ideas on the issue of side effects. Some say its a sign its working. Since its sending my body into overdrive its proof its doing something. So I guess thats good news?
I knew I had had too many good days in a while. Just had to go and get these side effects....Just when I was starting to build up strength on the treadmill too. Baby steps....
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