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
Wednesday, February 27, 2013
A Day with Nae! Race For The Cure...
Join me for the Twin Cities “Race for the Cure” on Mother’s Day, May 12, 2013!!
My family and I will be doing the 5K Walk (3.1 miles) and we would LOVE for you to join our team! J The Race will be held outside the Mall of America and it is a wonderful experience for a great cause!
Our team name is called “Nae’s Way” (in honor of the current “detour” I am taking). You can register to walk with us at the following Web site:
www.komenminnesota.org
Once you get to the site, you will need to click on the tab that says “Komen Race For The Cure” and then “Register”. You can register online or by mailing your forms in. Make sure you register as a team participant, not as an individual. (You will need to select team “Nae’s Way” from a dropdown list of teams.)
Here are a few of the basics…
- With your registration fee you receive a t-shirt, race bib, wristband and Race Day refreshments.
- Adults and kids can walk. Strollers are ok for the walk, but all participants (even babies) must be registered.
- If you register before March 7th, you can get a discount (Adults $25, Kids $12). If you register between March 8th and April 18th it’s $30 for adults and $15 for kids. After April 19th and the fee goes up to $35 for adults and $17 for kids.
- The team captain is responsible for picking up the team packet of shirts and materials, so I will be taking care of this and will organize a meeting time and place for us the day of the race.
- The race starts at 9:00 a.m., but we will meet earlier (probably 7:30 or 8:00 somewhere). They also have a Health Expo from 7-10 with free stuff and refreshments.
Team Shirts???
Just a little backdrop….the Minnesota Volleyball Association hosts a tournament every year up in Duluth called Arrowhead. It is a benefit tournament and this year it is going to be held in my honor.
We are selling t-shirts and raffle tickets for the tournament and ALL of the proceeds will go to Susan G. Komen Breast Cancer Foundation in my name. (our own little way of fundraising *smile*) The t-shirts are black with a pink ribbon and a volleyball on them and they are super cute!
I think it would be fun for my team to have matching shirts, but it is certainly not required by any means. In fact, we can have a mixture of matching Arrowhead t-shirts and Race For the Cure t-shirts (free with your registration), so whatever you choose to wear is fine by me! I will just be honored to have people walking with me! J
Care to join us??? J
Friday, February 22, 2013
Sorry it has taken me a while to sit down and update my blog. I have been busy. Well, kind of. If you consider “resting” A LOT to be busy, then yes….I have been VERY busy! J Last Friday I had my 3rd big round of chemo, and much like my 1st round, I have been feeling quite tired and nauseous afterwards.
I spoke with my Oncologist last week, and asked her some more questions about the timing of surgery and next steps after chemo. I had originally thought that I would have surgery in June or July, but she made it sound like she wants me to have surgery right away in May to prevent any of the tumors from growing back. (On a side note…I would really like to organize a team to walk with me on Mother’s Day for the Race for the Cure, so I am hoping that I can work surgery in the week after the race, but we shall see!)
Have a wonderful weekend!
Love to all,
Nae
Thursday, February 7, 2013
It's been a great week!
I have felt good, the hives on my hand have gone away, and most of my taste buds seem normal...HOORAY! All week, I kept waiting for the other shoe to drop....what symptom is going to be next?? I am happy to say that the worst of my worries this week have been a slightly runny nose and some dry skin. Me and the rest of the world, right? :) I can handle that!
I was excited to be able to play in a tournament last Sunday and also in league on both Monday AND Tuesday nights. *smile* Not only did our coed team win the tournament on Sunday, but I had a heart-warming experience while I was there. In between games, one of the guys from one of the opposing teams came over to chat with my team. We talked about volleyball, how he was from Owatanna and just stuff in general. Before he left though, he bent down and shook my hand...he said "I just wanted to say that I have a lot of respect for you being out on the court playing, I think that's great!" I stood up to talk with him more and he proceeded to tell me that his 4 year old son has a form of cancer called Neuroblastoma. I told him that Aaron's cousin's daughter has the same thing. We talked for a while about a flag football benefit that he started and how it has grown over the years and then he gave me a big hug before walking away.
WOW. Not only do I have respect for people that have the courage to go up to total strangers to express words of kindness, but my respect went through the roof for this young man when he told me that he was a "stepfather" to this little boy with cancer. I told him that too. I admire him for being a father figure to this little boy who is struggling with cancer because I am sure a lot of people would not even consider taking a challenge like that on. However, I could tell by the way he spoke of his son and showed me pictures, that he was MEANT to be in this little boy's life. That made my day!
That's one cool thing about having a shaved head. People know that you are a probably going through some kind of cancer treatment. It may ostracize me a bit from some people, but it also brings out the supportive people that have been through it, or know someone that has. It's THOSE people that I want to meet and share my journey with and hear theirs. I welcome their hugs and their words of encouragement because it empowers me and makes me feel so good inside. It's nice to not feel alone in this crazy world we live in. :)
In addition to volleyball, I was able to attend a class put on by the American Cancer Society on Tuesday. It's called "Look Good, Feel Better" and it is a free class where all of the participants get a free bag of makeup and a cosmetologist comes in to show us how to apply it (this included tips for drawing in eyebrows in case we lose our own). I enjoyed the class and felt a sense of confidence walking out with my new makeup. :) Thanks to the American Cancer Society for this wonderful program!
Last, but not least, I am going to post some pictures of the night we shaved my head and a picture of my fun new wig. Sorry for the delay in sharing! (You can click on the pictures to see them enlarged.)
Enjoy the rest of your week!
Love to all,
Nae
I was excited to be able to play in a tournament last Sunday and also in league on both Monday AND Tuesday nights. *smile* Not only did our coed team win the tournament on Sunday, but I had a heart-warming experience while I was there. In between games, one of the guys from one of the opposing teams came over to chat with my team. We talked about volleyball, how he was from Owatanna and just stuff in general. Before he left though, he bent down and shook my hand...he said "I just wanted to say that I have a lot of respect for you being out on the court playing, I think that's great!" I stood up to talk with him more and he proceeded to tell me that his 4 year old son has a form of cancer called Neuroblastoma. I told him that Aaron's cousin's daughter has the same thing. We talked for a while about a flag football benefit that he started and how it has grown over the years and then he gave me a big hug before walking away.
WOW. Not only do I have respect for people that have the courage to go up to total strangers to express words of kindness, but my respect went through the roof for this young man when he told me that he was a "stepfather" to this little boy with cancer. I told him that too. I admire him for being a father figure to this little boy who is struggling with cancer because I am sure a lot of people would not even consider taking a challenge like that on. However, I could tell by the way he spoke of his son and showed me pictures, that he was MEANT to be in this little boy's life. That made my day!
That's one cool thing about having a shaved head. People know that you are a probably going through some kind of cancer treatment. It may ostracize me a bit from some people, but it also brings out the supportive people that have been through it, or know someone that has. It's THOSE people that I want to meet and share my journey with and hear theirs. I welcome their hugs and their words of encouragement because it empowers me and makes me feel so good inside. It's nice to not feel alone in this crazy world we live in. :)
In addition to volleyball, I was able to attend a class put on by the American Cancer Society on Tuesday. It's called "Look Good, Feel Better" and it is a free class where all of the participants get a free bag of makeup and a cosmetologist comes in to show us how to apply it (this included tips for drawing in eyebrows in case we lose our own). I enjoyed the class and felt a sense of confidence walking out with my new makeup. :) Thanks to the American Cancer Society for this wonderful program!
Last, but not least, I am going to post some pictures of the night we shaved my head and a picture of my fun new wig. Sorry for the delay in sharing! (You can click on the pictures to see them enlarged.)
Love to all,
Nae
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