After the initial 5 day dose of steroids wore off (around Wednesday of last week), I started to get itchy again. *pout* The hives never really went away, they just became tolerable during the treatment. So when my steroid pack ran out and I could tell they weren't gone...I called my oncology nurse AGAIN (I am sure she was just as thrilled as I was to have me on the phone *smile*). I told her I couldn't stand it anymore and the Benedryl wasn't doing anything to help.
OK she said....time to bring the BIG DOGS in. She talked to my oncologist and put me back on the heavy steroids I take when I am going to be having my big chemo days. 5 more days of steroids should do the trick. She warned me that I might not be able to sleep very well on all of the steroids...I just laughed and told her that I could handle being awake as long as I wasn't awake and ITCHY! LOL
After 10 days of steroids, I am finally only experiencing the residual effects of my nasty hives last week....bruised fingernails (yes, from scratching so much...who knew that could even happen??), small scabs on my skin where I scratched too much (I simply couldn't help it!), and excessively peely skin (if only it would have been from an exotic destination sunburn instead of hives! *smile*).
Amidst it all, was the big Arrowhead Benefit Volleyball Tournament & Raffle up in Duluth. It was a fabulous weekend and we raised lots of money for Susan G. Komen! Yay! (I don't have totals just yet because I have to hammer out my taxes this week first, but will post info and pictures about the benefit next week perhaps). My Divas did an AHHH-MAZING job donating their time and efforts toward making the benefit a HUGE success, AND we took 2nd in our division at the tournament! WOOT!! LOVE YOU GUYS SO MUCH!!!
Tomorrow is my next big chemo day. *sigh* Normally it wouldn't bother me, but I am quite apprehensive this time around. After my painful reaction the last time, I am nervous to see what awaits me this time...simply because allergic reactions can get worse with each exposure. :(
Oh well....time to battle fire with FIRE! Instead of taking 2 pills of steroids the day before my big chemo and the couple days that follow, they are loading me up with 5 pills of steroids today, 5 pills the day of, a steroid IV during chemo and MORE steroids on the days that follow...THE BIG DOGS even....HOORAY! (anyone need help moving furniture this weekend? I might be your gal...hahahaha!!) Here's hoping and PRAYING that taking steroids up front will do the trick!!
Hope you all have a Blessed Easter!!
Love to all...
Nae
Thursday, March 28, 2013
Tuesday, March 19, 2013
HIVES, HIVES, AND MORE HIVES!!!
Oh my. Well, my second
allergic reaction came on about 1 week after my last big chemo day and boy was
I down for the count! The hives were more severe then the last time I had them
and they made me absolutely miserable! The doctor put me on a 5 day regimen of
steroids and Benedryl, but it took at least 3 days for the massive itching to
subside and here I am still covered in these ugly hives as I wait for them to
totally GO AWAY!
I try to be positive about things, but sometimes when you are in pain you just want to be validated that you are not being a total wuss about things. Somehow hearing “you have a right to be upset about this” makes you feel better about being upset. I am sure it is purely psychological, but whatever works, right? J (I am going to post some pictures below of the dreadful hives to just give you a snapshot of what I am talking about. You know….to back up my complaints and to encourage validation. *smile*)
For those of you that have
never had hives….be GRATEFUL! When you have them, you have this intense urge to
just scratch and scratch and SCRATCH. It’s this delicate balance between
scratching them hard enough that it makes you feel better, but not TOO hard so
that you damage your skin and cause more pain. I have to tell you, I kind of
felt like a little kid with chicken pox…I wasn’t supposed to scratch, but I
just couldn’t stop!
I have been sitting in the house for the past 4 days, missing a game day with dear friends, the Women’s State Volleyball Tournament and the first night of playoffs last night. I HATE to miss out!
I called my oncologist today and she said that the hives could linger for a while, but as long as they don’t get any worse I should be ok. I asked her if playing volleyball tonight would be bad for them and she said they might flare up a little with heat, but that I could take a cool shower afterwards and they should get better later in the evening.
Other then being a little apprehensive to go out in public looking somewhat dreadful, I am so excited to get out of the house! Hopefully I can put my self-consciousness aside and just not care what others think of my appearance. That’s how life is supposed to work right? Easier said then done. J I am sure I will go out of my way to make sure people know I am not contagious, and as long as they know that, I guess I shouldn’t care what they think of my splotchy red skin. (if only I could have learned that lesson in my younger school days!)
I read a quote in the newspaper a couple months back and although I don’t have the exact wording or author handy, it went something like this:
“Life might not always be wrapped with a bow, but it is always a gift.”
Again…it’s all about perspective. With that, I would like to leave you with a more pleasant picture to end this blog entry. J I bought a fun new scarf and earrings a week ago with some money that I earned from consigning a few of the clothes that belonged to my dear mom. They make me smile, so I thought I would share…
Love to all…
Nae
I try to be positive about things, but sometimes when you are in pain you just want to be validated that you are not being a total wuss about things. Somehow hearing “you have a right to be upset about this” makes you feel better about being upset. I am sure it is purely psychological, but whatever works, right? J (I am going to post some pictures below of the dreadful hives to just give you a snapshot of what I am talking about. You know….to back up my complaints and to encourage validation. *smile*)
For those of you that have
never had hives….be GRATEFUL! When you have them, you have this intense urge to
just scratch and scratch and SCRATCH. It’s this delicate balance between
scratching them hard enough that it makes you feel better, but not TOO hard so
that you damage your skin and cause more pain. I have to tell you, I kind of
felt like a little kid with chicken pox…I wasn’t supposed to scratch, but I
just couldn’t stop! I have been sitting in the house for the past 4 days, missing a game day with dear friends, the Women’s State Volleyball Tournament and the first night of playoffs last night. I HATE to miss out!
I called my oncologist today and she said that the hives could linger for a while, but as long as they don’t get any worse I should be ok. I asked her if playing volleyball tonight would be bad for them and she said they might flare up a little with heat, but that I could take a cool shower afterwards and they should get better later in the evening.
Other then being a little apprehensive to go out in public looking somewhat dreadful, I am so excited to get out of the house! Hopefully I can put my self-consciousness aside and just not care what others think of my appearance. That’s how life is supposed to work right? Easier said then done. J I am sure I will go out of my way to make sure people know I am not contagious, and as long as they know that, I guess I shouldn’t care what they think of my splotchy red skin. (if only I could have learned that lesson in my younger school days!)
I read a quote in the newspaper a couple months back and although I don’t have the exact wording or author handy, it went something like this:
“Life might not always be wrapped with a bow, but it is always a gift.”
Again…it’s all about perspective. With that, I would like to leave you with a more pleasant picture to end this blog entry. J I bought a fun new scarf and earrings a week ago with some money that I earned from consigning a few of the clothes that belonged to my dear mom. They make me smile, so I thought I would share…
Love to all…
Nae
Wednesday, March 13, 2013
A plan in place...
Last week was an insanely
busy week! Snow day, multiple doctor’s appointments, conferences, a day at the
museum with the kids, my big chemo day, 2 volleyball tournaments, a benefit
dinner AND we lost an hour of sleep. I
don’t like to give up sleep normally, but this past weekend, I really missed
it! J Needless to say, I am BEAT! I think it is all
catching up with me, so I have been nestled on the couch the past few days trying
to recoup.
I have a lot of info to share, so I should probably just jump right in and start…
It has been quite the challenge to try to coordinate all of the doctors and moving pieces with my journey. What comes first? How long does that last? Who will do that? Will it interfere with that? What are my options? Depending on who you ask, the answers can vary…which can make planning a little tricky at times. J
Several times I have wished that all of the doctors could be in one room at a time so that I can just get a plan in place, instead of bouncing back and forth between each one (oncologist, surgeon, radiation oncologist, plastic surgeon, etc.). After numerous appointments however, I think we have it figured out.
My last big round of chemo is scheduled for April 19th. I will still have weekly doses of Herceptin, following this big dose, but this shouldn’t impact the date of my surgery in any way. As long as my big chemo dates go as planned, and my white count remains intact, this will be my schedule:
Originally, we were planning to do the mastectomy and reconstruction at the same time, but with the timing of everything, we decided to go a different route. The radiation needs to be started within 4-6 weeks after surgery, and the plastic surgeon didn’t think that she would be able to do the breast expansion within that time frame (and they don’t recommend doing the expansion of the skin after radiation). We opted to wait on the reconstruction until after the radiation was complete.
After weighing my options, I decided on doing a “TRAM” surgery in September. Instead of having expanders and implants, they will use skin, fat, and muscle from my abdomen to complete the reconstruction. In essence, it is a double surgery of sorts, but who can argue with getting a small tummy tuck out of the deal, right?? J I am especially excited about the idea of having some of the excess skin on my tummy taken care of. You know, that skin that one inevitably gets when pregnant with twins?? The skin that will NOT go away no matter how much you work out?? J That is DEFINITELY one of the “bright sides” to doing a surgery of this kind. Recovery time will probably not be the smoothest (since I will have 2 locations to heal), but in the end, I think it is the best choice for me.
Other news….or should I say GREAT news?? I received my genetic test results back. BRCA1 and BRCA2 tests came back negative!! Hooray! What this means….I am not at a higher risk for ovarian cancer and I will not need to have my kids tested for the gene when they get older! J
Ok….I think I have talked your ear off enough for today…thank you for taking the time to follow me through this all!
Love to all…
Nae
I have a lot of info to share, so I should probably just jump right in and start…
It has been quite the challenge to try to coordinate all of the doctors and moving pieces with my journey. What comes first? How long does that last? Who will do that? Will it interfere with that? What are my options? Depending on who you ask, the answers can vary…which can make planning a little tricky at times. J
Several times I have wished that all of the doctors could be in one room at a time so that I can just get a plan in place, instead of bouncing back and forth between each one (oncologist, surgeon, radiation oncologist, plastic surgeon, etc.). After numerous appointments however, I think we have it figured out.
My last big round of chemo is scheduled for April 19th. I will still have weekly doses of Herceptin, following this big dose, but this shouldn’t impact the date of my surgery in any way. As long as my big chemo dates go as planned, and my white count remains intact, this will be my schedule:
-
May
12th Race for the Cure Mother’s Day Walk with my wonderful family
& friends! J
-
May
14th Surgery scheduled for double mastectomy and lymph node removal.
-
End
of June….Radiation scheduled for 33 days of Monday-Friday treatments.
-
Beginning
of September…Reconstruction surgery scheduled.
Originally, we were planning to do the mastectomy and reconstruction at the same time, but with the timing of everything, we decided to go a different route. The radiation needs to be started within 4-6 weeks after surgery, and the plastic surgeon didn’t think that she would be able to do the breast expansion within that time frame (and they don’t recommend doing the expansion of the skin after radiation). We opted to wait on the reconstruction until after the radiation was complete.
After weighing my options, I decided on doing a “TRAM” surgery in September. Instead of having expanders and implants, they will use skin, fat, and muscle from my abdomen to complete the reconstruction. In essence, it is a double surgery of sorts, but who can argue with getting a small tummy tuck out of the deal, right?? J I am especially excited about the idea of having some of the excess skin on my tummy taken care of. You know, that skin that one inevitably gets when pregnant with twins?? The skin that will NOT go away no matter how much you work out?? J That is DEFINITELY one of the “bright sides” to doing a surgery of this kind. Recovery time will probably not be the smoothest (since I will have 2 locations to heal), but in the end, I think it is the best choice for me.
Other news….or should I say GREAT news?? I received my genetic test results back. BRCA1 and BRCA2 tests came back negative!! Hooray! What this means….I am not at a higher risk for ovarian cancer and I will not need to have my kids tested for the gene when they get older! J
Ok….I think I have talked your ear off enough for today…thank you for taking the time to follow me through this all!
Love to all…
Nae
Monday, March 4, 2013
Benefit Info and other updates...
Just a few updates to fill you all in...
I have not heard back yet from genetic testing, but will let you all know as soon as I know more. Cobra goofed in confirming with Blue Cross that we were covered for insurance for the second half of January, so that pushed my test out until they could sort it all out. Thank goodness it was THEIR fault and not mine. ;)
This week I have a number of appointments....Tuesday I meet with my radiation oncologist to discuss our plan for radiation following surgery, Wednesday morning I meet with my plastic surgeon to discuss reconstruction details after my double mastectomy, Wednesday afternoon I have a check in with my regular oncologist, and Friday finishes the week off with my fourth BIG chemo session.
Other things that are going on...
Every year the MN Volleyball Association runs a benefit tournament up in Duluth. This year the tournament proceeds are being donated to Susan G. Komen Breast Cancer Foundation in my honor. We are selling t-shirts and raffle tickets and you can purchase either item at www.mnvba.com (click on the "Arrowhead Central" tab for more information). Below is a picture of the shirts...they are $12.00 (my favorite number!).
Raffle tickets are only $1 or 7 for $5.00 and they we have AWESOME prizes this year!! (iPad2, iPad Mini, iPod Nano, 1 week stay at Bay View Lodge, signed MN Vikings Percy Harvin Jersey and MANY other prizes!!) Drawing will be held on March 22nd at Grandma's Sports Garden in Duluth, but you do NOT need to be present to win!
(A huge thank you to Shari Perkins for designing the cool Arrowhead shirt below!)
I have not heard back yet from genetic testing, but will let you all know as soon as I know more. Cobra goofed in confirming with Blue Cross that we were covered for insurance for the second half of January, so that pushed my test out until they could sort it all out. Thank goodness it was THEIR fault and not mine. ;)
This week I have a number of appointments....Tuesday I meet with my radiation oncologist to discuss our plan for radiation following surgery, Wednesday morning I meet with my plastic surgeon to discuss reconstruction details after my double mastectomy, Wednesday afternoon I have a check in with my regular oncologist, and Friday finishes the week off with my fourth BIG chemo session.
Other things that are going on...
Every year the MN Volleyball Association runs a benefit tournament up in Duluth. This year the tournament proceeds are being donated to Susan G. Komen Breast Cancer Foundation in my honor. We are selling t-shirts and raffle tickets and you can purchase either item at www.mnvba.com (click on the "Arrowhead Central" tab for more information). Below is a picture of the shirts...they are $12.00 (my favorite number!).
Raffle tickets are only $1 or 7 for $5.00 and they we have AWESOME prizes this year!! (iPad2, iPad Mini, iPod Nano, 1 week stay at Bay View Lodge, signed MN Vikings Percy Harvin Jersey and MANY other prizes!!) Drawing will be held on March 22nd at Grandma's Sports Garden in Duluth, but you do NOT need to be present to win!
(A huge thank you to Shari Perkins for designing the cool Arrowhead shirt below!)
Hope you are staying warm and safe in this snowy weather we are having! Have a great week!
Love, Nae
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