I've been trying to think of things to do to keep myself occupied. I always look forward to weekends because my friends and siblings don't have school and my parents don't have work. I get really excited during the week just thinking about my weekend plans even if they aren't anything special. For example, this weekend I'm going to my brother's football game at school and then I have plans with friends Saturday night. Before I got sick, these would be very normal only slightly exciting weekend plans but now I find that every little thing I do that involves other people gets me really excited- and not because I'm healthy enough to do them but just because I'm so bored that everything seems exciting.
I've also been looking for things to do during the week that don't involve other people but keep me entertained and busy. I'm really interested in taking a cooking class because I think it would be a lot of fun. It's just kinda hard to find one that will take up enough of my time (not just one class) and that hasn't started already... My aunt also owns a radiology practice in the city and she's trying to get me a part-time job two or three times a week there taking calls and notes and whatever else she needs. I'm not sure if that's gonna work out but I hope it does because it'll definitely give me something to do and I'll get paid :). It's funny how small things like these excite me so much more than they used to. I also wish that my friends didn't have school so we could hang out all day. I'm also kinda getting sick of watching movies and tv and reading books all day...
My other weekend plans include dinner with my brother, a Jets game, and a college interview (which I'm really scared for meh).
Hope you enjoyed my little update. Feel free to share any of your weekend plans or any suggestions for me (thanks to people who already have!)
<3Ella
Friday, November 11, 2011
Thursday, November 3, 2011
Hey
Sorry it's been so long since my last blog post. I've been super busy with college stuff, hospital visits, and schoolwork. I've also been too lazy to write...
I don't know if everyone saw, but my mom's friend wrote an article about me in the Jewish Week which was really nice. You can read it here if you want: http://www.thejewishweek.com/special_sections/healthcare/its_surprisingly_liberating_not_have_hair
In other news, I applied to college (YAY), I started visiting the hospital only once a week, and I've been feeling pretty good. The doctors were definitely right when they said that the first two months would be the hardest because I feel much better now than I did then. It's kinda weird because aside from being more tired and the occasional nausea, I don't really feel that sick. I'm happy about that but it makes me want to be able to do normal things like go to school even more and since I can't, I get upset.
Not much else has been going on- I've actually been pretty bored lately. Anyone have any good book or movie recs?
I'm excited that thanksgiving is almost here. It's one of my favorite holidays because of all of the delicious food :).
Thanks for all of the continued support. I'll try not to wait so long this time between posts. :)
Love always,
Ella <3
I don't know if everyone saw, but my mom's friend wrote an article about me in the Jewish Week which was really nice. You can read it here if you want: http://www.thejewishweek.com/special_sections/healthcare/its_surprisingly_liberating_not_have_hair
In other news, I applied to college (YAY), I started visiting the hospital only once a week, and I've been feeling pretty good. The doctors were definitely right when they said that the first two months would be the hardest because I feel much better now than I did then. It's kinda weird because aside from being more tired and the occasional nausea, I don't really feel that sick. I'm happy about that but it makes me want to be able to do normal things like go to school even more and since I can't, I get upset.
Not much else has been going on- I've actually been pretty bored lately. Anyone have any good book or movie recs?
I'm excited that thanksgiving is almost here. It's one of my favorite holidays because of all of the delicious food :).
Thanks for all of the continued support. I'll try not to wait so long this time between posts. :)
Love always,
Ella <3
Thursday, October 13, 2011
New Hospital Adventures
Today I went to the hospital- an event that I have become very accustomed to. I did the usual bloodwork and talking to the np (that's hospital lingo for nurse practitioner).
Side note- other fun hospital lingo:
After my normal routine was done and I found out that I didn't need any transfusions but that my counts are still low and I'm still neutropenic (booo), dad and I had lunch.
Side note- other fun hospital lingo:
- cbc: complete blood count
- pdh: pediatric day hospital
- msk: memorial sloan kettering
- port: metaport (my central line)
- access your port: stick a needle in your port
- de-access your port: take a needle out of your port
there's probably more I just can't remember...
After my normal routine was done and I found out that I didn't need any transfusions but that my counts are still low and I'm still neutropenic (booo), dad and I had lunch.
My new hospital adventure started when I went from the 9th floor (where the pdh is located) to the first floor to visit physical therapy and occupational therapy (which are conveniently located in the same place). The doctors recommended that I do both in order to build up my strength. The occupational therapist (named Laura) explained that her job was to make sure that I can do all of the daily things that I'm accustomed to doing without the side effects of my treatment and fatigue getting in the way. For example, I get tired very easily doing everyday tasks like showering, getting dressed, and making myself food. Laura's job is to make me stronger so that I can do those things like I used to be able to do them--- without getting tired. She gave me some simple arm, hand and back exercises to do at home and hopefully I'll be a little bit stronger every time I stronger every time I see her which, for now, is every other week. Physical therapy was pretty much the same thing, but for my leg strength and endurance. As I mentioned before, I get tired doing everything, so pt should build up my endurance. I also get leg pain, specifically in my knees a lot- I think from just walking around, so pt should also work towards making my legs stronger. I'm not sure what specific exercises they're gonna have me do yet. Today they just did some baseline tests on my strength and endurance. I'll go in for pt every week.
Overall, it was kinda fun and I'm excited to work to get my strength back. It's annoying being tired all the time and not being as strong as I used to be.
OK, so that was my adventure. Please comment and ask questions and tell me what to write about because I'm running out of material!!! :D
Thanks for reading!
Love,
Ella <3
P.S. don't mind the link below, but if you want an email every time I update this blog, you should click on the little icon on the upper right-hand corner that says "follow this blog"!
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P.S. don't mind the link below, but if you want an email every time I update this blog, you should click on the little icon on the upper right-hand corner that says "follow this blog"!
<a href="http://www.bloglovin.com/blog/3092212/ellameryland?claim=wc454nppmgn">Follow my blog with Bloglovin</a>
Sunday, October 9, 2011
ELLA TOTALLY WROTE THIS
My best friends EVER
Thursday, September 29, 2011
Update!!
Sorry its been so long since I've updated I just haven't really felt like it...
Monday I started my new treatment cycle called consolidation one. It's the first step in making sure that they get rid of the .01% of leukemia cells that they didn't get in the first stage of treatment (called induction). That does mean that induction successfully got rid of 99.9% of my leukemia cells which technically means I'm in remission! That sounds more exciting than it actually is. It's exactly what was supposed to happen after induction. Now the hard part is getting rid of the rest of the leukemia and making sure it doesn't come back. That's what's gonna take the longest amount of time and that's what I'll be working on for the next year. But remission is certainly good news and it means I'm on the right track!
Now back to Monday:
-I had my old central line removed and new one put it. The new one doesn't have chords hanging off of it like the old one did which makes it much easier to shower. The new one lays under my skin and once it completely heals, you won't even be able to tell it's there. The only bad part about it is that whenever the need to access it, they have to stick me with a needle, but they did give me a numbing cream that I can put on before I go in for treatment which should make it better.
-After the surgery, I got a new chemo called cytarabine which needed an hour of fluids via IV before hand. The drugs ran for 3 hours and then I also needed another hour of fluids via IV afterwards.
-I also got a blood transfusion because my hemoglobin numbers were down. That also ran for about an hour but they were able to do it while I was getting the chemo.
-Needless to say, Monday was a long day. I got to the hospital around 7:30 AM for the hour-long surgery which didn't actually start until around 12:00 PM and we left the hospital around 8:00 PM. Most of the time was spent waiting for things to actually happen.
Tuesday:
-I got to the hospital around 10:30 AM and was immediately sent to the bed area where they give treatments. I was very surprised that they didn't make me wait to get bloods drawn or anything (which they usually do). I was happy to get the day started as quickly as possible.
-The very nice nurse Chris started me on IV fluids which I needed an hour of before getting another new chemo called methotrexate which ran for 4 hours.
-Chris also gave me a chemo called pegaspargase which was two shots: one in each leg. They hurt a lot for like 2 minutes but then I was fine. I also needed to observed for 5 hours after the peg shots to make sure I didn't have a reaction to them. I didn't...
-The peg shots and the methotrexate started around the same time so I ended up leaving the hospital around 4:00 PM. Not too bad...
Wednesday:
-Got to the hospital around 10:00 AM and was again told to go straight to the bed area. yay
-I got Chris again as my nurse (apparently I'm her favorite patient and she requested me :))
-I got the same cytarabine as I did on monday along with the hour of IV fluids before and after.
-The also gave me another chemo called vincristine which is just a 15 second push that I've gotten before.
-Everything didn't really start until 11:00ish so we left the hospital around 4:30 PM. Again, not bad.
As you can see, I've gotten a lot of chemo in the last few days. I feel pretty tired but I'm still not neutropenic and the good news is, I don't have to go back to the hospital until Monday and that's just for blood work. More good news is that my last chemo for the month is next Thursday and its just a quick push of vincristine :) They do say I'll probably have to come in for transfusions and spinal taps and whatnot but we'll play that by year. After this month consolidation 2 starts which I'm assuming will be a repeat of consolidation 1. I also started steroids again after a quick 4-day hiatus. The steroids are actually another form of chemo and I'm on a much higher dose this time so prepare for crazy eating and crazy emotions. woohooo :)
I know this update was very medically-focused so feel free to comment if you have any questions! Also let me know what you want me to write about on my next post! That's all for now. I have some legitimate homework due Monday so that's what I'll be doing this weekend. Happy New Year (for my Jewish readers)! That's all for now!
Love,
Ella
Monday I started my new treatment cycle called consolidation one. It's the first step in making sure that they get rid of the .01% of leukemia cells that they didn't get in the first stage of treatment (called induction). That does mean that induction successfully got rid of 99.9% of my leukemia cells which technically means I'm in remission! That sounds more exciting than it actually is. It's exactly what was supposed to happen after induction. Now the hard part is getting rid of the rest of the leukemia and making sure it doesn't come back. That's what's gonna take the longest amount of time and that's what I'll be working on for the next year. But remission is certainly good news and it means I'm on the right track!
Now back to Monday:
-I had my old central line removed and new one put it. The new one doesn't have chords hanging off of it like the old one did which makes it much easier to shower. The new one lays under my skin and once it completely heals, you won't even be able to tell it's there. The only bad part about it is that whenever the need to access it, they have to stick me with a needle, but they did give me a numbing cream that I can put on before I go in for treatment which should make it better.
-After the surgery, I got a new chemo called cytarabine which needed an hour of fluids via IV before hand. The drugs ran for 3 hours and then I also needed another hour of fluids via IV afterwards.
-I also got a blood transfusion because my hemoglobin numbers were down. That also ran for about an hour but they were able to do it while I was getting the chemo.
-Needless to say, Monday was a long day. I got to the hospital around 7:30 AM for the hour-long surgery which didn't actually start until around 12:00 PM and we left the hospital around 8:00 PM. Most of the time was spent waiting for things to actually happen.
Tuesday:
-I got to the hospital around 10:30 AM and was immediately sent to the bed area where they give treatments. I was very surprised that they didn't make me wait to get bloods drawn or anything (which they usually do). I was happy to get the day started as quickly as possible.
-The very nice nurse Chris started me on IV fluids which I needed an hour of before getting another new chemo called methotrexate which ran for 4 hours.
-Chris also gave me a chemo called pegaspargase which was two shots: one in each leg. They hurt a lot for like 2 minutes but then I was fine. I also needed to observed for 5 hours after the peg shots to make sure I didn't have a reaction to them. I didn't...
-The peg shots and the methotrexate started around the same time so I ended up leaving the hospital around 4:00 PM. Not too bad...
Wednesday:
-Got to the hospital around 10:00 AM and was again told to go straight to the bed area. yay
-I got Chris again as my nurse (apparently I'm her favorite patient and she requested me :))
-I got the same cytarabine as I did on monday along with the hour of IV fluids before and after.
-The also gave me another chemo called vincristine which is just a 15 second push that I've gotten before.
-Everything didn't really start until 11:00ish so we left the hospital around 4:30 PM. Again, not bad.
As you can see, I've gotten a lot of chemo in the last few days. I feel pretty tired but I'm still not neutropenic and the good news is, I don't have to go back to the hospital until Monday and that's just for blood work. More good news is that my last chemo for the month is next Thursday and its just a quick push of vincristine :) They do say I'll probably have to come in for transfusions and spinal taps and whatnot but we'll play that by year. After this month consolidation 2 starts which I'm assuming will be a repeat of consolidation 1. I also started steroids again after a quick 4-day hiatus. The steroids are actually another form of chemo and I'm on a much higher dose this time so prepare for crazy eating and crazy emotions. woohooo :)
I know this update was very medically-focused so feel free to comment if you have any questions! Also let me know what you want me to write about on my next post! That's all for now. I have some legitimate homework due Monday so that's what I'll be doing this weekend. Happy New Year (for my Jewish readers)! That's all for now!
Love,
Ella
Saturday, September 24, 2011
Birthday :)
Today (well its after midnight now so I guess yesterday) was my birthday. It was a really nice day that consisted of Skypeing with my psych class, eating Chipotle at the movies with mom (we saw Moneyball, in case you were wondering. It was pretty good), napping, getting ready for family dinner, and eating at a delicious restaurant :) I really couldn't have asked for more- it was kinda perfect.
I must admit it was weird not being in school and seeing my friends on my birthday for the first time since I can remember. I got many lovely texts and calls and wall posts though, wishing me a happy birthday (thanks everyone!) Psych class also sang to me (and Noah) via Skype :)
As far as other birthday plans go, I'm having dinner with my friends tomorrow night which I'm super excited about and then on Sunday, we're going to the Mets-Phillies game (GO PHILLIES!!!! I'm a little obsessed with them) which I'm also super excited about. Let's just hope this little slump they're going through doesn't extend through the weekend (sorry if you don't like baseball and have no idea what I'm talking about).
My room was also just finished being painted (yay!) It's a really pretty blueish color that goes great with my new silver-gray sheets. Now all I need is my Aunt Jane to help me with some fun decorations and new furniture and I'm all set! woohooo :)
I'm kinda trying to cram my weekend with lots of fun things because on Monday I'll be starting a new treatment cycle which means my counts will go down again and I won't feel as good as I do now. All I can say is that I'm really glad that my counts came up when they did!
I know it's been a little while since I've posted so I just wanted to give this quick little update. I do have a lot more treatment information and updates on how everything's going but I don't feel like writing it all down now so I'll try to post again tomorrow. I'm also being interviewed tomorrow by my mom's friend who is writing an article about childhood Leukemia. I don't really know what to expect but I'll let you guys know how it goes. Thanks again for the birthday wishes and the support and for reading!
Love always,
Ella <3
I must admit it was weird not being in school and seeing my friends on my birthday for the first time since I can remember. I got many lovely texts and calls and wall posts though, wishing me a happy birthday (thanks everyone!) Psych class also sang to me (and Noah) via Skype :)
As far as other birthday plans go, I'm having dinner with my friends tomorrow night which I'm super excited about and then on Sunday, we're going to the Mets-Phillies game (GO PHILLIES!!!! I'm a little obsessed with them) which I'm also super excited about. Let's just hope this little slump they're going through doesn't extend through the weekend (sorry if you don't like baseball and have no idea what I'm talking about).
My room was also just finished being painted (yay!) It's a really pretty blueish color that goes great with my new silver-gray sheets. Now all I need is my Aunt Jane to help me with some fun decorations and new furniture and I'm all set! woohooo :)
I'm kinda trying to cram my weekend with lots of fun things because on Monday I'll be starting a new treatment cycle which means my counts will go down again and I won't feel as good as I do now. All I can say is that I'm really glad that my counts came up when they did!
I know it's been a little while since I've posted so I just wanted to give this quick little update. I do have a lot more treatment information and updates on how everything's going but I don't feel like writing it all down now so I'll try to post again tomorrow. I'm also being interviewed tomorrow by my mom's friend who is writing an article about childhood Leukemia. I don't really know what to expect but I'll let you guys know how it goes. Thanks again for the birthday wishes and the support and for reading!
Love always,
Ella <3
Tuesday, September 20, 2011
Amazing News!!!! :D
MY COUNTS ARE UP!!! yayyyyyy :D That means I am no longer neutropenic! I get to eat in restaurants and see people and not feel like I'm quarantined in my house! I had the most amazing Japanese food, in a restaurant, with people around, tonight for dinner, and it was HEAVENLY! :) The doctor said my counts should stay high for about a week (yay freedom!!) which is perfect timing because my birthday is on Friday and I'll get to do whatever I want!! I could not be happier! wooohoooooo :D
Today the doctors talked a lot about the next stages of my treatment because this is the end of stage one but I forget the specifics of what happens next so I'll post them later. I got like a 10 month timeline of all my treatments so I'm super set. I do know that tomorrow I have to go in for a surgical consult to talk about getting a more permanent line in my chest for treatments. I'm actually kinda happy about that though because this central line thing that I have now is starting to annoy me. I have three little tubes hanging out of my chest that get in the way of everything and the new line is supposed to go under my skin and not bother me nearly as much. The only down side of it is that it's a more invasive procedure to get it inside of me but oh well. The actual surgery is set for about a week from now assuming all goes well.
Today they also gave me another plasma transfusion to help my blood clot which I can't really tell you anything about because they completely knocked me out with Benadryl (to prevent any bad reactions). Apparently they hooked me up for about an hour and then I went home and slept for another three hours. I was out the entire time, but hey, no complaints, I do love sleeping :)
In other news, spa day was kind of a failure. I was hoping to just get a manicure at the salon (seeing as I don't have any hair) but when we got there, we were told that the manicurist was not there. I proceeded to lounge around while my sister and mom got blowouts (I was happy to wait because seeing them getting pampered made me happy). They then brought in a makeshift manicurist who did my nails and then proceeded to tell me that she usually wears glasses :) (needless to say, it wasn't the best manicure). Overall though, the people who organized the event (Chai Lifeline) were very nice and the gesture was very much appreciated.
In the end, (because I think my mom felt bad) we ended up going shoe shopping which honestly was sooo much better than spa day :D Let me just say that I love new shoes. I only got three pairs *;)*
I also wanted to mention that Chai Lifeline is a great organization that helps families with children with severe illnesses. They have volunteers come to the hospital and hand out snacks and food to the kids and they organize fun events for parents and siblings of patients. They also help with schooling and insurance and whatever else people need. I honestly don't think I've ever appreciated the work that charity organizations do as much as I do now and not at all in a selfish way. I'm not saying that because they benefit me specifically, I'm saying that because it genuinely warms my heart to see how much people care and that other people are getting as much love and support as I am. I think going through this has made me see just how much the support truly means.
There's also this fun organization called Look Good Feel better that gives chemo patients free makeup and free makeup lessons that "teach beauty techniques to female cancer patients to help them combat the appearance-related side affects of cancer treatment."(from to their website). I think it's a really fun little self-esteem booster. I'm totally doing a workshop especially because 1) I had to throw away all of my makeup because of the bacteria living in it and 2) I think playing around with my makeup will be especially fun now that I don't have hair :). That's on Wednesday so I'll let you know how it goes :D
Tomorrow after the hospital I'm gonna go the paint store and start looking at paint swatches for my room. It's getting a makeover for my birthday :D
If you got all the way to the end, thanks for reading! Sorry for rambling! I hope it was at least somewhat entertaining :)
Love,
Ella <3
Today the doctors talked a lot about the next stages of my treatment because this is the end of stage one but I forget the specifics of what happens next so I'll post them later. I got like a 10 month timeline of all my treatments so I'm super set. I do know that tomorrow I have to go in for a surgical consult to talk about getting a more permanent line in my chest for treatments. I'm actually kinda happy about that though because this central line thing that I have now is starting to annoy me. I have three little tubes hanging out of my chest that get in the way of everything and the new line is supposed to go under my skin and not bother me nearly as much. The only down side of it is that it's a more invasive procedure to get it inside of me but oh well. The actual surgery is set for about a week from now assuming all goes well.
Today they also gave me another plasma transfusion to help my blood clot which I can't really tell you anything about because they completely knocked me out with Benadryl (to prevent any bad reactions). Apparently they hooked me up for about an hour and then I went home and slept for another three hours. I was out the entire time, but hey, no complaints, I do love sleeping :)
In other news, spa day was kind of a failure. I was hoping to just get a manicure at the salon (seeing as I don't have any hair) but when we got there, we were told that the manicurist was not there. I proceeded to lounge around while my sister and mom got blowouts (I was happy to wait because seeing them getting pampered made me happy). They then brought in a makeshift manicurist who did my nails and then proceeded to tell me that she usually wears glasses :) (needless to say, it wasn't the best manicure). Overall though, the people who organized the event (Chai Lifeline) were very nice and the gesture was very much appreciated.
In the end, (because I think my mom felt bad) we ended up going shoe shopping which honestly was sooo much better than spa day :D Let me just say that I love new shoes. I only got three pairs *;)*
I also wanted to mention that Chai Lifeline is a great organization that helps families with children with severe illnesses. They have volunteers come to the hospital and hand out snacks and food to the kids and they organize fun events for parents and siblings of patients. They also help with schooling and insurance and whatever else people need. I honestly don't think I've ever appreciated the work that charity organizations do as much as I do now and not at all in a selfish way. I'm not saying that because they benefit me specifically, I'm saying that because it genuinely warms my heart to see how much people care and that other people are getting as much love and support as I am. I think going through this has made me see just how much the support truly means.
There's also this fun organization called Look Good Feel better that gives chemo patients free makeup and free makeup lessons that "teach beauty techniques to female cancer patients to help them combat the appearance-related side affects of cancer treatment."(from to their website). I think it's a really fun little self-esteem booster. I'm totally doing a workshop especially because 1) I had to throw away all of my makeup because of the bacteria living in it and 2) I think playing around with my makeup will be especially fun now that I don't have hair :). That's on Wednesday so I'll let you know how it goes :D
Tomorrow after the hospital I'm gonna go the paint store and start looking at paint swatches for my room. It's getting a makeover for my birthday :D
If you got all the way to the end, thanks for reading! Sorry for rambling! I hope it was at least somewhat entertaining :)
Love,
Ella <3
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