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Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 5/22/2011 7:24 AM (GMT -6)   
Hi everyone,

I am just letting you know whats happening with my chemo,

I was put on a vent for a few days last week when things were really bad, i had never felt so weak and sick! But I'm off the vent now, I sat two exams on Friday from the hospital, don't think I did very well but just had to do them to put my mind at ease and stop stressing! I am sitting another two tomorrow.. I don't know why I'm doing it.. I don't have to but I just can't stop putting pressure on myself to do well no matter how sick i feel! haha so getting them done will stop me stressing i guess

I'm still in hospital, we tried to get them let me have the rest at home but have to stay for another 2 weeks then they will see if I can go home! I'm still Feeling very weak and quite sick, typing this post will probably make me sleep for about 5 hours! I'm feeling very very down too :( and my parents have been pretty rude to me lately, like I just can't do anything right.. And right now is when I really need their support :( I guess they are worried but it's not like I'm not scared and losing strength!

Anyway, I'm a lot better than the first week of chemo, hopefully things will stay the same or even get better from here!

Thanks so much for the prayers and posts

xx

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 5/22/2011 8:51 AM (GMT -6)   
Hi Buttercup,
 
I'm so sorry you are having to go through this.  Sometimes parents can do and say such hurtful things when they really don't mean to.  I know my daughter told me I hurt her feelings the other day and that she felt like she couldn't do anything right and I never even realized I had done it.  I love her with all of my heart, as I'm sure your parents love you.  I think you are a fantastic young lady and one who has a serious life purpose.  I am proud to say that I know you (even if it is only on HW).
 
I hope you rest well my friend and that you recover quickly.
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/22/2011 8:52 AM (GMT -6)   
Hi Buttercup :) It's good to see you posting, though I'm very sorry to hear about how unwell you've been with the chemo side effects.

Out of interest - what sort of OS have you got on your computer there? I don't much like it myself (I use a program called Dragon), but if you have Vista or (I think) Windows 7, there is an inbuilt voice recognition software. I don't know if dictating a post would be less tiring for you than typing?

Take care, and I hope that you keep on improving *hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

suesueky
Regular Member


Date Joined Apr 2011
Total Posts : 87
   Posted 5/22/2011 9:16 AM (GMT -6)   
Hiya sweet Buttercup

So glad you posted lovie, been wondering how you have been going on. You have been amazing lovie getting through all of this and to add to it doing your exams aswell. I would not worry too much about your exams sweetie they will take your health situation into account when they mark them. You need to just concentrate on you at the moment (((((((hugs))))))). Your parents are most probably worrying about you lovie and may not be gettting much sleep which can also make them a bit snappy at times, I am sure they do not realise they are doing it sweetie. They love you so much and want to get you home with them.

I am so proud of you and am very pleased to know you, you are such a brave and strong willed young lady. I hope the side effects lessen soon for you and you start to feel a bit better.

Take care sweet Buttercup and I will keep you in my prayers xxxxxxxxxxx
Suesueky

Disc degenerative disease, L3/4 board disc bulge, L4/5 board disc bulge with significant nerve root compression on right L5 nerve root and also DDD at L5/S1. I also have an enlarged uterus with fibroids and have been a sufferer of psoriasis now for about 8 years.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 5/22/2011 11:22 AM (GMT -6)   

 

             Oh my sweet little Buttercup. You are in my heart and in my prayers.

             I know you can get thru this. You are an amazing teenager much stronger and

              braver than your sixteen years.

             I love you girlie. Check your emails hon.

        Suzane, xxxxxxxxx


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 5/22/2011 12:16 PM (GMT -6)   
Isn't it sort of ironic that because the parents of someone who is extremely ill haven't got any sleep that we provide a sense of it's ok to be rude? When anyone should know that no matter the cirumstance of the parents lives at that moment the attention and support should be on the person ill especially if it is a child.

I hope your doing much better, and I hope it all works for you and you get to go home soon.

Just curious how did they out of the blue come up with 2 weeks?

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 5/22/2011 12:23 PM (GMT -6)   
I've been following your story and am saying prayers for you..

As others have mentioned...I'm sure you know how much your parents love you..everyone reacts to stress and worry in different ways...some not so great...Hopefully you can sit and talk with them and let them know what you need from them emotionally during this time..as well as they can find ways to talk with others who are going through this too..We know what it's like to be the patient, which isn't easy that's for sure...it's also hard to be the one who is watching a loved one in pain and feel helpless...not excusing bad behavior..just saying it's good to all share your feelings on this..

Maybe you will get lucky and your vitals and tests will be good enough to go home sooner than 2 weeks...we will hope for this!!!

Rest up and try not to stress too much about school...that's great that you felt up to taking those two tests....sometimes it is good to do things to keep your mind occupied on something else...just don't push yourself...your health is number 1!..

Post Edited (Snowbunny21) : 5/22/2011 12:38:46 PM (GMT-6)


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 5/22/2011 1:27 PM (GMT -6)   
Oh I had asked where the doctors had come up with 2 weeks out of the blue it seemed to me. But she mentioned your vitals are not so great? What are they? How is the oxygen in your blood? Is it above like 93 o or 94 at least? What about your blood pressure? Mine is really all over the place. And like for me I know doctors and nurses like to say, 'if your in pain then your blood pressure will go up or should be up', but for me it's almost CONSTANTLY and ALWAYS lower when I'm in pain, especially horrible pain then my blood pressure is surely lower then normal. And sometimes its lower just to be lower lol.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 5/22/2011 2:19 PM (GMT -6)   
 
 
     Crohn's Patient:
         Keep in mind that Buttercup is only 16 so she may not remember all her vital signs or
 
         understand them, esp. with her being so weak and tired.
 
          The why for two weeks of chemo; well that is decided upon the protocol for her type
 
          of leukemia and also for the fact she has already faced leukemia at the age of seven.
 
           Hopes this helps you a bit.
 
   Suzane

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/22/2011 4:15 PM (GMT -6)   
During the initiation ( induction) phase of chemo, they bombard the body with a very large dose of chemo concoctions to kill off the leukemia cells and those others attacking her body right now. Because this kills off her immune system, she has to be kept away from anyone with any germs whatsoever, because any type of infection can be disastrous for her right now. When my sister battled leukemia three years ago, she was kept in the hospital for the first 30 + days until her blood counts rose enough for her to safely go home.
This is the toughest part, since the doses of chemo are so great right now. She will slowly start to feel better after a week or so, but until her blood levels and immune system is back up where it needs to be they will keep her to make sure she doesn't get exposed to something dangerous.
Her parents I know must be both scared and worried sick. It doesn't excuse them being rude to her, not at all but I can understand that their fears for her are monumental right now and they must have been really scared after her being placed on a vent.....
Buttercup, you are an amazing young woman and I know that you will beat this thing......keep fighting the good fight and try to be patient with your parents and they will try to be with you, I hope.......this is a scary time for all of you honey......we all are sending up prayers for you, and for your family too.
Hugs
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 5/22/2011 5:34 PM (GMT -6)   
Hi Buttercup
 
Boy you sure have went through the wringer, and I know how tough this has been on you. Chemo can just plain knock you off your feet! Have you had any problems with severe neausea or vomiting, or have they been able to keep that pretty well in check?. mrsm123 hit upon some important points. Chemo can make your neutraphils plummet, and those are the cells in your blood that protect you from getting colds and infections, so please becareful about keeping away from any body that even appears to be sick or have a cold!  I am sure that you have heard all this before. You are so young to have to go through all of this, and it is by no means a picnic! Try and be strong Buttercup, your attitude can make the difference, remember when the going gets tough, the tough get going! You have to be tough Buttercup! You  have all of us here giving you our support, and I keep you in  my prayers!!!
 
I am sorry that your parents appear to be rude to you. But you know Buttercup I bet  they are just scared, frightened, and they are trying to act brave and tough for you! You now parents often put up  a front, and try to act brave and stern, when really inside they are just as scared and confused about it all as you are!  But they feel they can't show that, because parents are suppose to be strong, and be able to fix things for their kids! When they can't they often feel helpless and out of control, ( which in fact they really are) but they are afraid to let you know that, so they put on the stern and sometime rude appearing front! I am not excusing their actions, I am just possibly trying to maybe explain the reason for it, to you. I have raise two daughters of my own, and believe me when I tell you, your parents are really concerned about you right now, more than you probably know!
 
You will get through this Buttercup, I wish you all the best!
 
White Beard
 
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/22/2011 6:40 PM (GMT -6)   
Awe Buttercup,
Sure hope your feeling better soon...your parents care a lot about you and
are probably so very scared...we luv ya here to and send that luv and prayers to
you...keep us posted as you can, thinking of you...
((((((((((((((((((((((((((((((Buttercup)))))))))))))))))))))))))))))))))))))))
healing hugz
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/22/2011 7:55 PM (GMT -6)   
Dear Buttercup,
 
I can't believe everything you have had to face and at such a young age.  And yet, you have faced it all as bravely as anyone could espect--braver even!  I admire your conviction to keep fighting to get well.  Please know that I know there are days when you don't feel so brave.  On those days, be gentle with yourself.  Just take it ten minutes at a time.  I know the expression is "One day at a time", but one whole day can be too much sometimes, so for now, take it ten minutes at a time and be oh so gentle with yourself.
 
Remember, we are all here for you, saying prayers and sending warm wishes your way always.
God bless you and help you with sending strong thoughts your way to make you strong.
 
I look forward to your next precious update.
 
Lindaloo
Co-Moderator Chronic Pain and Fibromyalgia Forums
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/23/2011 9:04 AM (GMT -6)   
Prayers and well wishes in hopes this all will fly by fast for you
and that you'll be home resting soon....still thinking of you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 5/25/2011 5:42 AM (GMT -6)   
Thank you so much everyone, you probably all know, the posts of encouragement go a long way in keeping spirits up especially through something like this :) you are all incredible!

I would reply to you all individually but right now I can't keep a thought in my head for long at all so it will probably stress me out trying to do that haha, I will try and chat to you all at some point though!

Crohns Patient - the 2 weeks was just a guess of how long i would be, because i finish this first chemo round in 11 days, then he said at least 3 days after the last treatment then I can probably go home and have home care for a week or however long it takes! Not too sure about all my levels sorry!

again thank you all so much! I am so down right now I feel like I need to cry so badly but I hold it in because I don't know why I want to cry and I just feel so confused and can't keep thoughts in my head or be happy at the moment.. but then coming on here and reading these posts lifts my mood and gives me more hope :)

I miss coming here daily :(

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/25/2011 6:13 AM (GMT -6)   
Dear Buttercup, thank you for coming and checking in with us all. Your strength and spirit is truly inspiring and I'm sure that it will help carry you through your latest treatment.

Thinking of you *hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/25/2011 1:50 PM (GMT -6)   
Buttercup, still thinking of you, lil one...
Have said Prayers for you and please know we all love you and
care so much about you...rest up and hope your doing better soon...
continued prayers and well wishes....
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/25/2011 9:36 PM (GMT -6)   
Hi Buttercup

It's good to see an update from you sweetie. You rest up, and don't worry about addressing us all separately. We completely understand. You take care. We do all love you.

love and soft hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/30/2011 1:28 PM (GMT -6)   
Hey How are you doing lil Buttercup?
Hope your getting a lil better each day and that your such a brave person...
Prayers and well wishes
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 5/31/2011 6:01 AM (GMT -6)   
Hey Chartreux,

Thanks for checking up on me, I'm doing I guess as well as I can be through this, feeling pretty awful still but my spirits are up a bit more now and I'm not feeling AS down which I know gives me some strength!

Each day does get easier, and yeah there are some where I feel like it's all turning around and getting worse and I'm ready to give up but eventually I get through them and get ready to face another day and then it gets easier once I get through the harder days!

I got my exam results back today, and I passed all of them (2 only just but still did it haha)! My teacher said this was incredible as I haven't been there and didn't study and of course the state of mind I was in and how sick I was/am, even got top mark for one exam which did lift my spirits a bit :)

But yeah hopefully soon I will start to feel better, only have I think 3 days of treatment now!

Thank you so much for the support!
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/31/2011 7:36 AM (GMT -6)   
Hi Buttercup. Glad to hear that you are feeling a little better - and WOW - congratulations on those exam results. That's mighty impressive :)

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

suesueky
Regular Member


Date Joined Apr 2011
Total Posts : 87
   Posted 5/31/2011 7:57 AM (GMT -6)   
Hiya Sweet Buttercup


WOOHOO! I am so made up you passed your exams lovie well done and congratulations. You are such an amazing young lady to be going through all this, I am so happy you are having better days now. Its lovely to see you posting again and I am sure I will have a chat soon with you lovie. Keep your chin up sweetie and I will be keeping you in my prayers and thoughts, loads of gentle (((((hugs))))))
xxxxxx
Suesueky

Disc degenerative disease, L3/4 board disc bulge, L4/5 board disc bulge with significant nerve root compression on right L5 nerve root and also DDD at L5/S1. I also have an enlarged uterus with fibroids and have been a sufferer of psoriasis now for about 8 years.

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 5/31/2011 8:05 AM (GMT -6)   
I'm on chat at the moment for however long I can handle it if anyone wants to come on :)
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/31/2011 9:35 AM (GMT -6)   
Hey woohoo on the exams...way to go...and soon the treatments will be over...
that'll be good...keep strong, more Prayers for you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/31/2011 5:36 PM (GMT -6)   
Hi Buttercup

It's good to hear that you are feeling a little better. It won't be long until the treatment will be over now. Hang in there.

It's so wonderful to hear that you passed your exams. Woohoo!!

You take care. My thoughts nare with you.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion
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