Hi Everyone!
Well after being bumped on Thursday, I was finally called with a room assignment on Friday afternoon. My mom and I dropped of Drew with the in-laws and headed down. Since I needed 3 hrs of fluids before they would start the Chemo, and then we had to wait for the Pharmancy to send it up, I didn't start with the Chemo until almost 10pm! Needless to say that made for a VERY long evening. Between running to the bathroom every 45 minutes or so due to all the fluids (dragging my friendly IV pole with me!) and the nurses coming in to change my IV bags, I had little sleep. But the goood news was they decided I only needed one Chemo treatment, so we were on the road home by noon on Saturday. The bad news is I was weighed on Friday and then again Saturday a few hrs before I left and had gained 10 lbs! Its fluid weight, so I should get rid of it all in the next couple days, but it still wasn't fun seeing the weight creeping up again!
I also got my Nuprogen shots, which will cause my Stem Cells to start mass producing so we can collect the 5-10 million I'll need for the transplant. I'll start taking them tomorrow for the next 10 days. Since I need such a large dose for the extra production, and the shots only come with smaller dosages, I have to give myself 3 shots a day! Yikes! Just call me the human pin cushion! Rumor has it these shots can cause pretty yucky bone pain too....but I'm hoping I can avoid this side effect since I've been lucky with everything else. I'll keep you posted! ;0)
But I'm hanging at my Parent's now, sitting by the fire, and Mom is cooking dinner. I'm feeling good, just a little tired so all is well! Back to Boston on Friday for a DRs appt and Tues for the first day of collection so I'll enjoy my non-eventful few days before then! Unless of course we get that nasty snow storm they are predicting Tues-Thurs and then it may not be so non-eventful!
Talk Soon!
xoxo
Tara
Saturday, January 29, 2011
Wednesday, January 26, 2011
And so it begins...
Hi Friends!
So I'm packing for my first admission to MGH to start this Stem Cell "Rescue" process. I will go in tomorrow morning for 2 days of Chemo, and come home Friday afternoon. Of course its fitting I get to travel the hour ride to Boston in a snow storm that will be more severe the closer to the city we get! Oh well...always a little extra excitment in my life! ;0)
I'm not really nervous for this part of the process. I've done IV Chemo, and this isn't the really nasty stuff I'll get later on in the process. And its only 2 days and then I'll be back home to the kiddos. So all in all, I should be looking at this as a mini-vacation right? Two days of reading, watching TV and napping with no distractions except the occasion blood draw and vitals check.
But still, I can feel Feb 22nd creeping up on me, and the nerves are starting to kick in. I hate that I'll have to leave my kids again, even if this time they are prepared and I know they are in great hands. As much as I love to complain about them, I love the little monsters and will miss them like crazy. I hate being stuck in the hospital and missing their hockey games and school activites and cuddling at bedtime. I hate trying to sleep in that uncomfortanle hospital bed, with all the hospital noise and really bad food. I hate that I'll be losing my hair. Its not so much the hair that I'm stressed about, I know that will grow back, but for the first time, I'm going to look sick. I'm going to look like a cancer patient.
For the last 3 months, people who knew what was going on have told me how great I look, and those that didn't, had no idea I was even sick. Now it will be all awkward stares and "how are you feeling"? Ugh...I hate people being concerned or worried about me. I hate people feeling sorry for me. I just want everyone to treat me the same as they always have. Please don't get me wrong, its not that I am not greatful for everyones concern, well wishes and extreme generousity. I just much prefer to be plain old Tara, rather than Cancer Girl, you know what I mean?
But, on the bright side, having this disease has shown me what an amazing circle of friends and family I do have, and for that I am eternally grateful. Kevin and I feel so loved and supported and that means the world to us. Havng this disease has also shown me whats truly important in life and to appreciate the time we do have. Living to 100 is not a guarentee so we should enjoy each day like it could be our last, and make sure that the people we love know that we love them. So for all of you reading this....I love you! But know that I'm going to be around for a really long time, so I'll be seeing you soon! I promise to keep you updated on my progress. Talk to you soon!
xoxo
Tara :0)
So I'm packing for my first admission to MGH to start this Stem Cell "Rescue" process. I will go in tomorrow morning for 2 days of Chemo, and come home Friday afternoon. Of course its fitting I get to travel the hour ride to Boston in a snow storm that will be more severe the closer to the city we get! Oh well...always a little extra excitment in my life! ;0)
I'm not really nervous for this part of the process. I've done IV Chemo, and this isn't the really nasty stuff I'll get later on in the process. And its only 2 days and then I'll be back home to the kiddos. So all in all, I should be looking at this as a mini-vacation right? Two days of reading, watching TV and napping with no distractions except the occasion blood draw and vitals check.
But still, I can feel Feb 22nd creeping up on me, and the nerves are starting to kick in. I hate that I'll have to leave my kids again, even if this time they are prepared and I know they are in great hands. As much as I love to complain about them, I love the little monsters and will miss them like crazy. I hate being stuck in the hospital and missing their hockey games and school activites and cuddling at bedtime. I hate trying to sleep in that uncomfortanle hospital bed, with all the hospital noise and really bad food. I hate that I'll be losing my hair. Its not so much the hair that I'm stressed about, I know that will grow back, but for the first time, I'm going to look sick. I'm going to look like a cancer patient.
For the last 3 months, people who knew what was going on have told me how great I look, and those that didn't, had no idea I was even sick. Now it will be all awkward stares and "how are you feeling"? Ugh...I hate people being concerned or worried about me. I hate people feeling sorry for me. I just want everyone to treat me the same as they always have. Please don't get me wrong, its not that I am not greatful for everyones concern, well wishes and extreme generousity. I just much prefer to be plain old Tara, rather than Cancer Girl, you know what I mean?
But, on the bright side, having this disease has shown me what an amazing circle of friends and family I do have, and for that I am eternally grateful. Kevin and I feel so loved and supported and that means the world to us. Havng this disease has also shown me whats truly important in life and to appreciate the time we do have. Living to 100 is not a guarentee so we should enjoy each day like it could be our last, and make sure that the people we love know that we love them. So for all of you reading this....I love you! But know that I'm going to be around for a really long time, so I'll be seeing you soon! I promise to keep you updated on my progress. Talk to you soon!
xoxo
Tara :0)
Monday, January 24, 2011
Welcome!
Hi Friends!
So I've decided that Facebook isn't necessarily the best venue for me to post updates of my ongoing cancer treatments. I mean, don't get me wrong, I adore Facebook, it is one of my favorite leisure activities these days! But for those of us on Facebook, we know that many people feel the need to share WAY to much personal information. And while thats one of the reasons I find Facebook so fascinating and entertaining, I'd rather keep the details of how I'm feeling and the medical stuff I'm going through to a tighter circle of people. Now before you start to tell me that a blog isn't really private either, I am aware of that, but I do feel some responsibility to share my story with others going through POEMS syndrome treatments because there is really so little info/personal experiences out there on the world wide web for those of us newly diagnosed with this disease. And what is out there is really outdated and scary. The few blogs I found have been so helpful to me and have really changed my attitude that not only will I get through the next couple months with no major issues, but that I have a very good chance of having a long and healthy life to both grow old with my husband and continue to love, nurture and aggrivate my children!! So for anyone who is interested in following me throug this journey- friends, family, friends of friends, or whomever else stumbles across this blog, whether you too have POEMS or a loved one does, welcome!
For those of you that are still unsure what exactly POEMS is, here are a couple great links that will explain it way better than I can:
http://www.mayoclinic.org/poems/
And and some links that explains the Stem Cell Transplant procedure which I'm scheduled to begin on 2/22/20111
http://www.webmd.com/cancer/autologous-stem-cell-transplant
http://www.mayoclinic.com/health/stem-cell-transplant/MY00089
And lastly, my doctors have said from the beginning that because I'm so young, and otherwise quite healthy, they have every expectation I will get through this with flying colors. While POEMS is not currently a "cureable" cancer, you can go many years without a relapse and the odds get better every year with new drugs and treatments coming out all the time. Here is link to a survivors story that has given me great hope for a long healthy future!
http://www.mayoclinic.org/patientstories/story-287.html
Thanks for reading, I hope with this blog to be able to keep you all updated through this process! Your support and love has meant the world to Kevin and I and we can't do any of this without you!!
xoxo
Tara :0)
So I've decided that Facebook isn't necessarily the best venue for me to post updates of my ongoing cancer treatments. I mean, don't get me wrong, I adore Facebook, it is one of my favorite leisure activities these days! But for those of us on Facebook, we know that many people feel the need to share WAY to much personal information. And while thats one of the reasons I find Facebook so fascinating and entertaining, I'd rather keep the details of how I'm feeling and the medical stuff I'm going through to a tighter circle of people. Now before you start to tell me that a blog isn't really private either, I am aware of that, but I do feel some responsibility to share my story with others going through POEMS syndrome treatments because there is really so little info/personal experiences out there on the world wide web for those of us newly diagnosed with this disease. And what is out there is really outdated and scary. The few blogs I found have been so helpful to me and have really changed my attitude that not only will I get through the next couple months with no major issues, but that I have a very good chance of having a long and healthy life to both grow old with my husband and continue to love, nurture and aggrivate my children!! So for anyone who is interested in following me throug this journey- friends, family, friends of friends, or whomever else stumbles across this blog, whether you too have POEMS or a loved one does, welcome!
For those of you that are still unsure what exactly POEMS is, here are a couple great links that will explain it way better than I can:
http://www.mayoclinic.org/poems/
And and some links that explains the Stem Cell Transplant procedure which I'm scheduled to begin on 2/22/20111
http://www.webmd.com/cancer/autologous-stem-cell-transplant
http://www.mayoclinic.com/health/stem-cell-transplant/MY00089
And lastly, my doctors have said from the beginning that because I'm so young, and otherwise quite healthy, they have every expectation I will get through this with flying colors. While POEMS is not currently a "cureable" cancer, you can go many years without a relapse and the odds get better every year with new drugs and treatments coming out all the time. Here is link to a survivors story that has given me great hope for a long healthy future!
http://www.mayoclinic.org/patientstories/story-287.html
Thanks for reading, I hope with this blog to be able to keep you all updated through this process! Your support and love has meant the world to Kevin and I and we can't do any of this without you!!
xoxo
Tara :0)
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