Life sure does get hectic doesn't it? I returned blogging on May 1, 2017 and swore I would update at least monthly, well here we are July 28, 2017... well I'm back again! I took a "lung cancer" break in June, I experienced severe toxicity and some progression on my 1st targeted therapy and even after increasing my dosage, although my follow up scans were stable, the toxicity was really taking a toll on me and my Oncologist did not want to continue on Tarceva. Good news is, that I am on another targeted therapy, Tagrisso and boy it is a whole different world! I feel great, the side effects are not as bad and I am loving life!
I mention I took a "lung cancer" break, there are many reasons behind this...progression as we call it is when your cancer is starting to grow again. I thought I would deal with it better then I actually did, it was pretty hard on me mentally. I am usually very active and involved in our Lung Cancer community sharing our stories, side effects, treatments etc. This time, I needed to deal with it alone. My Oncologist was more worried about the toxicity then she was my progression and I trust her 100%. Although I was not happy at all about moving on to my 2nd line of treatment, I am grateful that there is one and that it is as wonderful as it is.
This week I have been focusing on getting back in the Lung Cancer game - Advocacy is so important in our community because of all the stigmas related to our disease and how underfunded our disease is, I know that whatever I can do to help, I want to do! I am coming back full force and am ready to do whatever it takes to help ensure that research and funding continues and gets better everyday!
Before my "break" I got to take part in the World Precision Medicine Conference held at Duke in May. I was there as the Patient Voice and it had such a great impact on me. I got to tell my story in front of the researchers, oncologists, investors, some pretty important people and it felt amazing. I truly felt like hearing my story was vital in understanding how important research is to us as Survivors. I hope to be able to share my story much more!
Tomorrow, we leave for Kill Devil Hills for our 1st ever Family Reunion!!! It all began at our party Jon and I held last June. It was an Anniversary/Celebration of Life party that a lot of my family members attended and it really made us realize that we needed to get everyone together. So we began planning and now a year later, it is finally here and I cannot wait. I get to see family that I haven't seen in over a decade!
Jon and I went to Puerto Vallarta last week for a Honeymoon Re-do. Our first honeymoon last June was an emotional disaster. I was 3 months in on my targeted therapy, rash was everywhere, mentally I was a wreck and I was losing my hair. So we decided to try it again and it was so worth it. We had such a great time and was such a memorable one. We vowed to go back to Puerto Vallarta with the kids as we fell in love with the town and the people. While we were in Mexico, the kids had the opportunity to go to a week long overnight camp for free near Greensboro, NC. It was called Camp Carefree and boy did they love it! I was nervous as they had never been there before but put it this way, Kaela was crying when she got picked up because she didn't want to leave and Brandon said he had a better time at camp then he did on his most recent cruise to the Carribean. I can't thank the folks at Camp Carefree for all that they do! Our kids want to go back next summer!
I am no longer working, I have been approved for SSDI and I have put in my Disability Retirement packet. The fatigue and side effects were just too much for my body to handle. So now I get to relax and rest when I need to without feeling pressured to work. I think going back to work after diagnosis was initially the right thing to do as it made me feel semi normal again, but after a year, I can feel my body screaming at me to slow down and my Oncologist agreed. I get to sleep in, take Kaela to school, volunteer, advocate and be a stay at home mom, something I always wanted to do, just didn't think it would be for this reason. But that my friends, is my silver lining!
2017 hasn't exactly been great for the Lung Cancer Community, we have lost some great Survivors this year, and it has definitely affected me mentally. I always think, wow, things can literally change day by day. It's a scary realization but it's very real. I think I have almost fully accepted my mortality. Weird and pretty grim to type that but I am almost to the point of acceptance. We are all going to die one day and we all don't know when that day is, so I am getting everything in order. But in the meantime, I am living life to the fullest. Looking back on my life, I definitely didn't take advantage of all that life has to offer before, but you can bet that I am now. I am living life by my new motto:
LIFE LIFE NOW! Tomorrow isn't promised for anyone folks, so whatever you want to do, do it NOW!
This is a short blog, but will update when we return next week I promise! But for now, I have to go have some fun with my family!!!
LIFE LIFE NOW
xoxo
Nicole
Learning to Live - A Journey Down Lung Cancer Street by a 36 Year old Mother and Wife
Friday, July 28, 2017
Monday, May 1, 2017
My return to the blogging world
I attended the LUNGevity Hope Summit this past weekend and all of the HOPE and Survivorship opened my eyes to how wonderful this community of Lung Cancer Survivors, Caregivers, Doctor's and Advocates really is. Thus, I decided to bring back my blog! I had stopped it last summer as it was just too early for me personally. I was still adjusting to my targeted therapy pill, emotionally I still was all over the place so whenever I would write, it would just make me cry and stir up so many emotions that I was no ready for. So here is Round 2
I am now 14 months in on my targeted therapy called Tarceva! I still despise some of the side effects, but in the end, it's a love/hate relationship that I have no problem dealing with for years and years to come as that is my goal! The median age of this drug working before resistance begins is about 12 months, well I have past that median age, however I have my scans on Tuesday May 9th! So the scanxiety is beginning to settle in but much later then all of my other scans. If you ask my husband or daughter how I have been the entire month prior to scans, they both will say um, well, a little witchy....yeah, witchy with a "B"! So if everyone can say a little prayer the night before or the morning of, my family and I would really appreciate it! Scans are the worst, the scanxiety is even worse, but thankfully, I get my results 2 hours after the scans and don' have to wait days for the results.
This blog could turn into a book if I tried to catch up on all that has gone on since last August, so the short version is, kicking cancer's ass, while having fun in LA, NYC, Myrtle Beach, birthday celebrations, holidays, dealing with side effects, and enjoying time with each other. Living Life Now instead of later! That has really become my mantra lately, LIVE LIFE NOW. So many people put their jobs in front of their marriages, their kids, everything else in their life. What happens when you simply run out of time for no planned reason? Then you never got to enjoy what life is really about, to me, MOMENTS. Moments with my family, my loved ones, my dearest friends....that is what life is about.
The LUNGevity Hope Summit was an amazing place for all of us Survivors to get together to bond and get information about our disease. It felt like a huge reunion! I talk to so many Survivors online through Facebook groups that I didn't realize how many it actually was until I saw all of them this past weekend. For a first timer, I was mentally and physically exhausted at the end. I appreciated everything that was planned and how it was executed, but talking cancer for 3 days straight definitely took a toll on me mentally. Of course the thought of scans coming up didn't exactly help it either.
I think what became more apparent to me during this weekend is that I must be missing something when it comes to how and why we have all of these different Lung Cancer Organizations basically spending their own separate money on their own versions of the same things. We know that Lung Cancer is incredibly underfunded, so why do we have many of the same things such as a New Patient Guide or an online database to collect data from patience. Obviously I am still new to this advocacy part but wouldn't it make sense to pool all of the money together and fund one single Guide or one single online data collection point? We all have this horrible disease, all we as Survivors want, is for the research to keep going, hopefully faster then ever and that the world is educated about our disease properly. I fail to understand why there is this great divide between most of the Lung Cancer foundations. Why can't we all just get along and do it together so that we can speed up the process as a whole? Every organization is working hard for our cause, imagine how much we could get done together?
Thanks for reading...this was a lot easier then last year, and I hope to touch on many different issues in the future, I refuse for this just to be based on my health and what goes on in my life!
LIVE LIFE NOW!
xoxo
Nicole
I am now 14 months in on my targeted therapy called Tarceva! I still despise some of the side effects, but in the end, it's a love/hate relationship that I have no problem dealing with for years and years to come as that is my goal! The median age of this drug working before resistance begins is about 12 months, well I have past that median age, however I have my scans on Tuesday May 9th! So the scanxiety is beginning to settle in but much later then all of my other scans. If you ask my husband or daughter how I have been the entire month prior to scans, they both will say um, well, a little witchy....yeah, witchy with a "B"! So if everyone can say a little prayer the night before or the morning of, my family and I would really appreciate it! Scans are the worst, the scanxiety is even worse, but thankfully, I get my results 2 hours after the scans and don' have to wait days for the results.
This blog could turn into a book if I tried to catch up on all that has gone on since last August, so the short version is, kicking cancer's ass, while having fun in LA, NYC, Myrtle Beach, birthday celebrations, holidays, dealing with side effects, and enjoying time with each other. Living Life Now instead of later! That has really become my mantra lately, LIVE LIFE NOW. So many people put their jobs in front of their marriages, their kids, everything else in their life. What happens when you simply run out of time for no planned reason? Then you never got to enjoy what life is really about, to me, MOMENTS. Moments with my family, my loved ones, my dearest friends....that is what life is about.
The LUNGevity Hope Summit was an amazing place for all of us Survivors to get together to bond and get information about our disease. It felt like a huge reunion! I talk to so many Survivors online through Facebook groups that I didn't realize how many it actually was until I saw all of them this past weekend. For a first timer, I was mentally and physically exhausted at the end. I appreciated everything that was planned and how it was executed, but talking cancer for 3 days straight definitely took a toll on me mentally. Of course the thought of scans coming up didn't exactly help it either.
I think what became more apparent to me during this weekend is that I must be missing something when it comes to how and why we have all of these different Lung Cancer Organizations basically spending their own separate money on their own versions of the same things. We know that Lung Cancer is incredibly underfunded, so why do we have many of the same things such as a New Patient Guide or an online database to collect data from patience. Obviously I am still new to this advocacy part but wouldn't it make sense to pool all of the money together and fund one single Guide or one single online data collection point? We all have this horrible disease, all we as Survivors want, is for the research to keep going, hopefully faster then ever and that the world is educated about our disease properly. I fail to understand why there is this great divide between most of the Lung Cancer foundations. Why can't we all just get along and do it together so that we can speed up the process as a whole? Every organization is working hard for our cause, imagine how much we could get done together?
Thanks for reading...this was a lot easier then last year, and I hope to touch on many different issues in the future, I refuse for this just to be based on my health and what goes on in my life!
LIVE LIFE NOW!
xoxo
Nicole
Wednesday, July 20, 2016
Life moves fast! Loving every minute of it!
Hey there! It's been over a month since I've posted due to a very busy summer schedule, but now things have calmed down. Most importantly, I feel great! My check ups have been great, lab work has been great and I set up my 2nd set of scans for August 17th to see how well I have been kicking cancers butt! Judging from last week when I was running a bit around downtown Raleigh for a work scavenger hunt, no breathing problems whatsoever, I would say this cancer is definitely getting it's butt kicked!
Jon and I went to Cancun, Mexico for our anniversary in June, it was so nice to be able to have some adult time after all that we have went through this year..It was an absolutely gorgeous resort, adults only with our own rooftop pool and a jacuzzi in our room. My rash didn't like the heat too much but after I got over it, I realized I just looked like everyone else because everyone else there was sunburned ha ha! At the end of the trip, my hair starting thinning A TON! But the trip was everything we needed for us, as a husband and wife in a stressful time in our lives, sitting on the beach with a drink in my hand everyday was the perfect prescription for this hell we have been through this year!
While we were in Mexico, Kaela went to Maryland with her dad and got to go see The Dolan Twins on tour and meet them! She said it was the best moment of her life and reminded me of when I met NKOTB. Kaela has it on video, has pictures and was so in the moment that she was crying when she met them. It is the most precious thing I have ever seen. I am so sad I missed it and that it coincided with our trip, but I knew she had to go so buying the tickets wasn't even a question, it was just making sure she got there, and she did! I talked to her right after she met them and she was crying and then I talked to her 4 hours later and she was still crying....That's my girl! Sensitive like her mother and I love her for it!
Once we got home, my hair continued to thin, it had me stressed and sad. I knew it was thin but at the rate it was going I felt like I would have to shave it all off, but thank goodness with some new shampoo/conditioner therapy, it stopped thinning as much and I noticed there is hair growing back by my hairline and Jon noticed new growth all over my scalp so that made me feel so much better. Oh, and for everyone that knows me pretty well, you know I have a lot of gray hair, well, my new hair growth is some gray and a lot of dark brown/black hair, so maybe this Tarceva is getting rid of some of my grays woo hoo!
We had our 1st Anniversary party the weekend after we got home from Mexico. We had a great turnout, lots of food, an awesome cake and and even better time seeing everyone we love! I had family come down from NY and Massachusetts who I haven't seen since 2000 and it was so great to catch up with everyone. We decided to plan a family reunion for Summer 2017 and everything is in the works now! Our party was fun, there was a lot of people, and it was great seeing everyone, but I know now, it's a ton of work! Next time, we will invite people over in small groups of 5-10 every other weekend ha ha!
What else....just enjoying life really...oh, I chopped my hair off! The frizzy, dry ends as a result of my Tarceva was causing tons of knots and causing my hair to come out more by brushing the knots out so I had my lovely hair stylist Carley come chop it off. It is the shortest it has ever been and I ABSOLUTELY LOVE IT!! I was so scared, but I'm soooo glad I did it.
All in all, a great, busy, tiring summer, but we are in relax mode now. The boys are on a cruise with their mom this week, it's weird not having them around, they were with us all last week and it's very quiet in the house, we miss them but know that they are having fun! We are thinking about doing a cruise with all the kids for Spring Break next year, I'm not a cruise fan, I went on a bunch when I was a kid, but the boys love them and I'm sure Kaela would too and they are pretty inexpensive for a big family like ours, so we might just bite the bullet and do it! It's about the kids!
There is a Lung Cancer Target Therapies forum in Colorado next month that I wanted to go to but it doesn't seem like I will be able to attend due to Kaela being in school and her father being on the road so much for work. I am hopeful I can make the next seminar, I talk to so many wonderful Lung Cancer Warriors online and would love to meet them in person, especially one, who literally saves my day sometimes because I know she is going through or has been through some of the same tough things as I go through. I now call her my Lung Cancer Bestie, her name is Lisa and I am so thankful to have met her! We have so many similarities, do the same things without knowing, it truly puts me at peace to know I have a battle buddy by my side as we used to say in the military!
Lastly, last night, I logged into an online UStream of the Addario Lung Cancer Foundation's Lung Cancer Living Room and I am so mad that was the first time I had ever done it. WOW! They went over the major talking points from a recent ASCO Conference about new treatments, clinical trial findings etc. I gained some much information and now I finally understand Immunotherapy! The broadcast last night gave us the chance to ask questions, meet other Lung Cancer Warriors and to learn what is upcoming in the Lung Cancer treatment future. I am so very hopeful and am so very excited to work with this great foundation. There is a walk/run in Spartanburg, SC this fall that I hope to be apart of, I would love to meet some of these ladies and support their cause. If anyone is interested in joining me, please let me know.
As always, love the life that you live.... I'm doing my best to do that. Negativity has no home in my life anymore and I am thankful I am at this point. Thank you to my friends and family who always support me and are there for me, no matter what. To my husband and my daughter, I love you both, thank you for loving me, caring for me and taking care of me no matter what I need!
Jon and I went to Cancun, Mexico for our anniversary in June, it was so nice to be able to have some adult time after all that we have went through this year..It was an absolutely gorgeous resort, adults only with our own rooftop pool and a jacuzzi in our room. My rash didn't like the heat too much but after I got over it, I realized I just looked like everyone else because everyone else there was sunburned ha ha! At the end of the trip, my hair starting thinning A TON! But the trip was everything we needed for us, as a husband and wife in a stressful time in our lives, sitting on the beach with a drink in my hand everyday was the perfect prescription for this hell we have been through this year!
While we were in Mexico, Kaela went to Maryland with her dad and got to go see The Dolan Twins on tour and meet them! She said it was the best moment of her life and reminded me of when I met NKOTB. Kaela has it on video, has pictures and was so in the moment that she was crying when she met them. It is the most precious thing I have ever seen. I am so sad I missed it and that it coincided with our trip, but I knew she had to go so buying the tickets wasn't even a question, it was just making sure she got there, and she did! I talked to her right after she met them and she was crying and then I talked to her 4 hours later and she was still crying....That's my girl! Sensitive like her mother and I love her for it!
Once we got home, my hair continued to thin, it had me stressed and sad. I knew it was thin but at the rate it was going I felt like I would have to shave it all off, but thank goodness with some new shampoo/conditioner therapy, it stopped thinning as much and I noticed there is hair growing back by my hairline and Jon noticed new growth all over my scalp so that made me feel so much better. Oh, and for everyone that knows me pretty well, you know I have a lot of gray hair, well, my new hair growth is some gray and a lot of dark brown/black hair, so maybe this Tarceva is getting rid of some of my grays woo hoo!
What else....just enjoying life really...oh, I chopped my hair off! The frizzy, dry ends as a result of my Tarceva was causing tons of knots and causing my hair to come out more by brushing the knots out so I had my lovely hair stylist Carley come chop it off. It is the shortest it has ever been and I ABSOLUTELY LOVE IT!! I was so scared, but I'm soooo glad I did it.
All in all, a great, busy, tiring summer, but we are in relax mode now. The boys are on a cruise with their mom this week, it's weird not having them around, they were with us all last week and it's very quiet in the house, we miss them but know that they are having fun! We are thinking about doing a cruise with all the kids for Spring Break next year, I'm not a cruise fan, I went on a bunch when I was a kid, but the boys love them and I'm sure Kaela would too and they are pretty inexpensive for a big family like ours, so we might just bite the bullet and do it! It's about the kids!
There is a Lung Cancer Target Therapies forum in Colorado next month that I wanted to go to but it doesn't seem like I will be able to attend due to Kaela being in school and her father being on the road so much for work. I am hopeful I can make the next seminar, I talk to so many wonderful Lung Cancer Warriors online and would love to meet them in person, especially one, who literally saves my day sometimes because I know she is going through or has been through some of the same tough things as I go through. I now call her my Lung Cancer Bestie, her name is Lisa and I am so thankful to have met her! We have so many similarities, do the same things without knowing, it truly puts me at peace to know I have a battle buddy by my side as we used to say in the military!
Lastly, last night, I logged into an online UStream of the Addario Lung Cancer Foundation's Lung Cancer Living Room and I am so mad that was the first time I had ever done it. WOW! They went over the major talking points from a recent ASCO Conference about new treatments, clinical trial findings etc. I gained some much information and now I finally understand Immunotherapy! The broadcast last night gave us the chance to ask questions, meet other Lung Cancer Warriors and to learn what is upcoming in the Lung Cancer treatment future. I am so very hopeful and am so very excited to work with this great foundation. There is a walk/run in Spartanburg, SC this fall that I hope to be apart of, I would love to meet some of these ladies and support their cause. If anyone is interested in joining me, please let me know.
As always, love the life that you live.... I'm doing my best to do that. Negativity has no home in my life anymore and I am thankful I am at this point. Thank you to my friends and family who always support me and are there for me, no matter what. To my husband and my daughter, I love you both, thank you for loving me, caring for me and taking care of me no matter what I need!
Wednesday, June 8, 2016
Hello Summer
It's June and it's HOT and I am loving it! Before this whole cancer thing that interrupted my life, I didn't like the humidity down here in North Carolina. It would literally get like a sauna, you would walk out of your front door and get hit with this sauna like heat wave. But, I have to say, I am loving it now. You see, my targeted therapy medication Tarceva, one of the side effects it has on me is that I am ALWAYS cold. It has gotten better as time goes on but I'm cold more then I am not, so now when it is super hot outside and my husband or one of the kids complains that it's SO HOT outside, I say nope, it's warm and I love it!
New York was a blast, it was so great to see how much Kaela loved the city. We got to see the 9/11 Memorial and Museum, we walked around SOHO, Chinatown, Little Italy, Times Square...there was so much to do and so little time. I think we literally walked over 15 miles during the trip. It was great though because although I was tired at night when we got back to the hotel, I was just fine walking, not out of breath, not tired, felt great to be back being active! We ate some great food, went to Chelsea Market, a street fair and people watched! I think Kaela most liked the shopping of course, she is a 13 year old girl and of course came home with way more clothes then she went with....but I did too....and so did Jon LOL.
We are heading to Mexico in 2 days!!! It's been a long first half to the year and I'm so ready to just relax and not have to think about work, money, cancer (although there is never a day that goes by that I don't think about having cancer), personal life issues. I'm ready to sit on the beach, by the pool, drink in hand and just relax! With LOTS of sunscreen on and a hat of course - Tarceva isn't friends with the sun! It will also be so nice to have some alone time with my husband. We have very little alone time, not complaining as we love our kids, but going through this, this year has truly changed us so we treasure every moment. We are going for a week so that should be just perfect!
Kaela will get to get some quality time with her father which she doesn't get much of as he is an OTR Truck Driver and is going to see The Dolan Twins on tour in Maryland while we are gone. Google them if you don't know who they are. She is infatuated with them, it's cute, reminds me of when I was infatuated with Donnie Wahlberg and NKOTB...oh wait, I kind of still am ;) However, The Dolan Twins don't really have any identifiable skills, they don't sing or dance, they are literally just You Tube stars who make silly videos all the time. Anyways, Kaela gets to meet them and get a picture with them, which is going to make her lifetime.
Our turnout for our party we are throwing in June has been great, we are going to have a lot more people then we expected and I have family coming down from Massachusetts that I haven't seen in over a decade! I'm super excited. If only we had time to get prepped and planned, we are busy every weekend until the party, but we will pull it off somehow. We have some GREAT friends that have offered to help us in every way possible. We didn't have a real wedding as we got married in Vegas, but a party of say 6o people in a 2800 sq ft house should be interesting, here's hoping it doesn't rain :)
We are heading to Virginia the following weekend when we get back from Mexico, my awesome cousin Brandon is graduating, I am so proud of him! He's such a talented and creative guy, he makes his own music and is a great artist, I see big things happening for him in the future. It will also be the first time all 5 of us have traveled up to see my family in Virginia. Blended families and schedules are always crazy! Then we come home Sunday (Father's Day) and will be bringing my Grandmother with us, she will stay with us all week, she gets to spend some quality time with Kaela and hopefully I can convince her to cook some of her good food for me for the party!
Life is about memories.... We may be busy, I may fall asleep early some nights to recuperate, but we are having fun living life. The cancer will always be in my mind, possibly always in my body, but it can't take away memories... Taking life day by day, enjoying all that I can and hoping for the best in my treatment! Thank you for the continued love and support!
New York was a blast, it was so great to see how much Kaela loved the city. We got to see the 9/11 Memorial and Museum, we walked around SOHO, Chinatown, Little Italy, Times Square...there was so much to do and so little time. I think we literally walked over 15 miles during the trip. It was great though because although I was tired at night when we got back to the hotel, I was just fine walking, not out of breath, not tired, felt great to be back being active! We ate some great food, went to Chelsea Market, a street fair and people watched! I think Kaela most liked the shopping of course, she is a 13 year old girl and of course came home with way more clothes then she went with....but I did too....and so did Jon LOL.
We are heading to Mexico in 2 days!!! It's been a long first half to the year and I'm so ready to just relax and not have to think about work, money, cancer (although there is never a day that goes by that I don't think about having cancer), personal life issues. I'm ready to sit on the beach, by the pool, drink in hand and just relax! With LOTS of sunscreen on and a hat of course - Tarceva isn't friends with the sun! It will also be so nice to have some alone time with my husband. We have very little alone time, not complaining as we love our kids, but going through this, this year has truly changed us so we treasure every moment. We are going for a week so that should be just perfect!
Kaela will get to get some quality time with her father which she doesn't get much of as he is an OTR Truck Driver and is going to see The Dolan Twins on tour in Maryland while we are gone. Google them if you don't know who they are. She is infatuated with them, it's cute, reminds me of when I was infatuated with Donnie Wahlberg and NKOTB...oh wait, I kind of still am ;) However, The Dolan Twins don't really have any identifiable skills, they don't sing or dance, they are literally just You Tube stars who make silly videos all the time. Anyways, Kaela gets to meet them and get a picture with them, which is going to make her lifetime.
Our turnout for our party we are throwing in June has been great, we are going to have a lot more people then we expected and I have family coming down from Massachusetts that I haven't seen in over a decade! I'm super excited. If only we had time to get prepped and planned, we are busy every weekend until the party, but we will pull it off somehow. We have some GREAT friends that have offered to help us in every way possible. We didn't have a real wedding as we got married in Vegas, but a party of say 6o people in a 2800 sq ft house should be interesting, here's hoping it doesn't rain :)
We are heading to Virginia the following weekend when we get back from Mexico, my awesome cousin Brandon is graduating, I am so proud of him! He's such a talented and creative guy, he makes his own music and is a great artist, I see big things happening for him in the future. It will also be the first time all 5 of us have traveled up to see my family in Virginia. Blended families and schedules are always crazy! Then we come home Sunday (Father's Day) and will be bringing my Grandmother with us, she will stay with us all week, she gets to spend some quality time with Kaela and hopefully I can convince her to cook some of her good food for me for the party!
Life is about memories.... We may be busy, I may fall asleep early some nights to recuperate, but we are having fun living life. The cancer will always be in my mind, possibly always in my body, but it can't take away memories... Taking life day by day, enjoying all that I can and hoping for the best in my treatment! Thank you for the continued love and support!
Monday, May 23, 2016
MRI, CAT scan and Traveling Yahooooooo!
It's been a few weeks since my last blog, I've been a busy girl. I had my 2 month follow up CAT scan and MRI on May 17th, good news is in, my tumor has shrunk 2.1 cm, my brain mets are GONE and my bone mets are healing! I am so, so, so grateful to be on this Tarceva! I am feeling like myself and loving it! I wasn't scheduled to get my results until Friday, May 20th, however my awesome Cancer Navigator Brenda called me the same night that I got my scans. Here is how the whole conversation went down. I am at Harris Teeter with my husband, picking up some things for a party we plan to have in June, I am checking out (which sometimes takes awhile when you use coupons, yes I am a couponer and I love it!). My phone rings, I see Brenda's name pop up on the screen, totally unexpected. I really thought I would have anxiety all week waiting until my appointment on Friday to get results. The thoughts in my head began to run....oh no, why is she calling me...is it bad, how bad? Maybe it's good, answer the phone Nicole! So I answer and Brenda is Brenda, you can hear her kindness a mile away so it's hard to decipher why she is calling just from her saying "Hi Nicole, what are you doing" question. I say well, I'm checking out at Harris Teeter and she responds okay, well do you want to call me back when you are done and I said Well if you are calling with bad news, I'm not calling you back but if you're calling with good news, you can tell me now! She laughed and said I'm calling with wonderful news, you are having a dramatic response to Tarceva and then told me my results. It really felt as though an elephant was lifted off my chest! I could see the happiness in my husband's eyes when I told him. As soon as we got home I couldn't wait to tell Kaela and just hug her. It was a moment I was truly ready for as the first 4 months of 2016 have literally been the hardest of my life!
The weekend before my scans we took the kids to Myrtle Beach, it was warm, weather was great and it was awesome just to relax and watch the kids have fun on the beach. It was also nice to get away from the house and try and get my mind off of my upcoming scans the next week. While we were there - a friend from High School happened to be staying at the hotel next to us! Small World! It was great seeing Jen and meeting her family. Everything happens for a reason and although I don't understand some of it, I just know that I was meant to be here, to live life to the fullest and I am going to do that!
Traveling is something we love to do so until I got the go ahead from my Oncologist to travel by plane anywhere, we were stuck going places close that we could drive too. Now, with my scans back, I am allowed to travel and we have already booked 2 trips....we are heading to NYC Memorial Day Weekend with Kaela, it is her first time and I am so excited to experience it with her! Then in June the hubby and I are going to Mexico to celebrate our 1 Year Anniversary. I have to tell you, when I was first diagnosed, I had no idea if I would even be here to celebrate it, so it's a pretty good feeling.
We surprised my Mom this past weekend, we drove up to Williamsburg, VA with some help from my sister coordinating it. My Mom is somewhat of a perfectionist, I know where I get it from so I knew if I told her I was coming she would go and clean the house from top to bottom and I didn't want her to stress about anything, so the best way to avoid all of that was to just pop in. It worked! I got to spend time with her and the rest of my family. It feels good to know I am doing good and I think it helps my family to actually see how good I am doing!
We are planning a 1 Year Anniversary Party at our house at the end of June, it is also a Celebration of Life party. You really never get how precious time is or how important relationships with family are or how small things truly, truly, truly do not matter in the long run. I have such a huge support system and Jon and I just wanted to be able to spend time with them, with each other and have a day full of laughs and smiles. We've spend so much of this year worrying, crying, depressed, stressed that it's time to enjoy everyone and everything that we have!
We will be busy through the end of June, but I would much rather be feeling good, kicking these cancer cells butt and happy then bored, sick and depressed at home! I have recently signed up to be a Lifeline through LUNGevity, for other Cancer Fighters to have someone to talk to, vent to, ask questions....I definitely don't have the experience or the knowledge that other Cancer Fighters do, but I am still learning and can't wait to learn more!!
Thank you again for the continued love and support.......xoxo
The weekend before my scans we took the kids to Myrtle Beach, it was warm, weather was great and it was awesome just to relax and watch the kids have fun on the beach. It was also nice to get away from the house and try and get my mind off of my upcoming scans the next week. While we were there - a friend from High School happened to be staying at the hotel next to us! Small World! It was great seeing Jen and meeting her family. Everything happens for a reason and although I don't understand some of it, I just know that I was meant to be here, to live life to the fullest and I am going to do that!
Traveling is something we love to do so until I got the go ahead from my Oncologist to travel by plane anywhere, we were stuck going places close that we could drive too. Now, with my scans back, I am allowed to travel and we have already booked 2 trips....we are heading to NYC Memorial Day Weekend with Kaela, it is her first time and I am so excited to experience it with her! Then in June the hubby and I are going to Mexico to celebrate our 1 Year Anniversary. I have to tell you, when I was first diagnosed, I had no idea if I would even be here to celebrate it, so it's a pretty good feeling.
We surprised my Mom this past weekend, we drove up to Williamsburg, VA with some help from my sister coordinating it. My Mom is somewhat of a perfectionist, I know where I get it from so I knew if I told her I was coming she would go and clean the house from top to bottom and I didn't want her to stress about anything, so the best way to avoid all of that was to just pop in. It worked! I got to spend time with her and the rest of my family. It feels good to know I am doing good and I think it helps my family to actually see how good I am doing!
We are planning a 1 Year Anniversary Party at our house at the end of June, it is also a Celebration of Life party. You really never get how precious time is or how important relationships with family are or how small things truly, truly, truly do not matter in the long run. I have such a huge support system and Jon and I just wanted to be able to spend time with them, with each other and have a day full of laughs and smiles. We've spend so much of this year worrying, crying, depressed, stressed that it's time to enjoy everyone and everything that we have!
We will be busy through the end of June, but I would much rather be feeling good, kicking these cancer cells butt and happy then bored, sick and depressed at home! I have recently signed up to be a Lifeline through LUNGevity, for other Cancer Fighters to have someone to talk to, vent to, ask questions....I definitely don't have the experience or the knowledge that other Cancer Fighters do, but I am still learning and can't wait to learn more!!
Thank you again for the continued love and support.......xoxo
Monday, May 9, 2016
Mother's Day and Normalcy!
Happy Mother's Day to all the Mommies out there! Yesterday was a great day, I got to spend it with my husband and daughter and they are truly the best :)
I said to my husband today, I feel normal again.... I've been in such pain and depression with all of this cancer stuff that finally I feel like "Nicole" again. I had a check up last week with my Dr - all of my blood work was great, my elevated levels were back in normal range again and I scheduled my first set of scans - Cat Scan and MRI for May 17th. This will show the wonders that my medicine Tarceva is doing to this cancer. I am pretty excited, although a bit of stress is there, we call it "Scanxiety". I get the results on May 20th, so those few days in between might be a little nail biting for me!
I looked at photos from our Mother's Day dinner last night today and thought to myself, wow, I am one lucky woman. This cancer has truly picked the wrong woman! I have such an amazing family support system and I am eternally grateful. I am happy again, I don't think about this stupid cancer 24/7 anymore. I am living life to the fullest, making plans for some fun traveling and very thankful that I am on this targeted therapy that allows me to live as if I am cancer free besides from a few side effects :)
If there is anything I can tell any stranger, any friend, any family member...it's to just BE HAPPY. Be happy with what you have, however big or small. Realize that, that mole hill that you made into a mountain, is just that, a mole hill. Life goes on, people come in and out of your life, money comes and goes, but your happiness is one thing that you must never sacrifice! Love those that love you and enjoy them!
I said to my husband today, I feel normal again.... I've been in such pain and depression with all of this cancer stuff that finally I feel like "Nicole" again. I had a check up last week with my Dr - all of my blood work was great, my elevated levels were back in normal range again and I scheduled my first set of scans - Cat Scan and MRI for May 17th. This will show the wonders that my medicine Tarceva is doing to this cancer. I am pretty excited, although a bit of stress is there, we call it "Scanxiety". I get the results on May 20th, so those few days in between might be a little nail biting for me!
I looked at photos from our Mother's Day dinner last night today and thought to myself, wow, I am one lucky woman. This cancer has truly picked the wrong woman! I have such an amazing family support system and I am eternally grateful. I am happy again, I don't think about this stupid cancer 24/7 anymore. I am living life to the fullest, making plans for some fun traveling and very thankful that I am on this targeted therapy that allows me to live as if I am cancer free besides from a few side effects :)
If there is anything I can tell any stranger, any friend, any family member...it's to just BE HAPPY. Be happy with what you have, however big or small. Realize that, that mole hill that you made into a mountain, is just that, a mole hill. Life goes on, people come in and out of your life, money comes and goes, but your happiness is one thing that you must never sacrifice! Love those that love you and enjoy them!
Tuesday, April 26, 2016
From Anger to Appreciation to Depression to Love
Any cancer diagnosis is bound to make a person sad and most of all angry. My diagnosis had me wrapped up in every emotion imaginable for the first 2 months. After the initial shock wears off you feel like SuperWoman and ready to fight this disease and then 2 minutes later, you're crying your eyes out angry at the world because you are the one that has to battle cancer. I would be driving in the car and see families out walking their dog and it would literally make me angry, all I could think was I have cancer, they do not, they are happy, I am not and I felt like it wasn't fair, still do.
The only bit of hope I had was my gene mutation and being able to take Tarceva, a targeted therapy chemotherapy pill. I really thought it was going to be easier then it was. I thought it's a pill, I don't have to go through actual chemo - so this should be a breeze. Then I started researching online the side effects, I read other cancer fighter's stories of their experience on Tarceva and it all scared me. A rash, especially on your face was almost guaranteed to occur and could occur the entire time I was on the pill. Diarrhea is a big side effect - great! Dry skin, another side effect, so much so, that you have to moisturize your entire body twice a day to keep it in check. I thought, I can handle this, I will keep my body lotioned up at all times and the rash should be minimal. Drinking water is also key in this side effect battle, so I drink 80 ounces of water a day, which is a task for me as I do not enjoy water at all, but I can definitely tell the difference when I am not hydrated and so can my skin!
The first week I took the pill - my symptoms vanished, my nagging cough disappeared, my pains were gone, my chest no longer hurt, my lymph nodes were no longer swollen and best of all, I could sleep! I thought, wow, this is great, I can do this! Then the worry that I was not going to get the rash kicked in. My Oncologist stated the worse the rash, the better the medicine was working. So the first week went by, no rash, then one day my face was pretty red - like I got a sunburn. I immediately went out with Kaela and Jon and bought some makeup - I don't normally wear anything but eyeliner and mascara but from my research I knew to buy some foundation for my rash so I could feel good about going out in public. The next day, the rash set in. I was no where near ready for it. It looked like I was a 12 year old pubescent boy...I had small whiteheads ALL over my face in addition to red splotches everywhere. It wasn't so bad at first, I thought I could get through it unscathed. I was wrong. It got worse as time went on and for a good 2 weeks, I was in a scary depression. No one likes to look in the mirror and hate what they see. My face itched, it was swollen, it was full of the rash, it didn't matter how much lotion, almond oil or coconut oil I put on it. I had to take Benedryl at night to sleep because my face itched so bad. But you know what kept me pushing? Kaela and Jon continued to tell me how beautiful I was and how temporary the rash was. Red face pic below!
I'll admit, I had days where I wanted to give up, I wanted to stop taking the pill. I was in so much misery, but the truth was, I wasn't in pain and that's what was important. I did have many breakdowns where I said forget this, I'm done, let the cancer kill me. It scared Jon to death and I can't blame him. I got in many fights with my mom because of my depression and I felt like a failure of a mother because I wasn't doing the normal things I did as a mom for Kaela. I couldn't function and it was eating me up inside. The rash spread to my chest and back. Finally just last week my face rash subsided some. As long as I keep lotion on my body, the rash isn't bad and is able to be covered by makeup and I look halfway decent! It's still there but not half as bad. I am now on my 2nd month of Tarceva and managing the side effects as best I can.
The funny thing about cancer is it brings out the worse and the best in people. To be able to manage both is a miracle, but I am getting pretty good at it. I have my days like yesterday when a little cough makes my anxiety go through the roof, or a pain I haven't had before makes me think the pill isn't working. This is my daily life and most likely all cancer fighters go through the same feelings. Any small thing and we worry about it non stop.
My Doctor's appointments have been good, I am going to Duke and have had a great experience with them so far. My Oncologist is positive that my first set of scans will be good and this makes me happy. I will have my first set of scans mid to late May to see how well the Tarceva is working. In a lot of people, it shrinks the tumors and kills the cancer cells. I will never be cured. But I hope to one day be something called NED which means No Evidence of Disease.
My relationships with my family have improved. I feel closer to my mother now then I ever have. Same goes for Jon. My relationship with Kaela is the one I treasure the most. She's a young teenager who doesn't deserve to see her mom go through this and the fact that she doesn't have a choice breaks my heart. The one good thing out of all of this is it is making our communication better. A lot of teens shut out their parents and although she wants to, I won't let her. We have a future full of fun things to do and see, traveling to do and just days of being silly that she is going to have to endure with me!
I returned to work last week after being out since late February. Being in the house worsened my depression. I have always worked my entire life since I was a teenager so not working for so long was different for me. I needed to get back in the real world, to get some social interaction and to get out in the fresh air. I'm tired sometimes, like this morning when getting out of bed was the last thing I wanted to do, but staying in the house is worse for me. I could file for disability and receive it based on my diagnosis but then I wouldn't have the good health insurance that I do through my job, and that is most important right now. I figured out the best thing for me mentally and physically is to live the life I was living before my diagnosis with some changes here and there.
It's funny because I get a lot of messages, texts and calls of friends/family wanting to visit and see me. If you google Lung cancer Stage 4, statistics show that 50% of those diagnosed with Stage 4 Lung Cancer die within a year. To educate you, those statistics are so outdated and no longer apply due to all the new developments in treatments. For my friends that think they need to come visit me asap because they think I won't be around for long, please know I will be around for a long time! I hope to be on Tarceva for a long time and after that there are more treatment options available for me including more targeted therapy. I do not look like I am sick, yes, I've lost 20 lbs thanks to the depression and appetite changes that Tarceva gave me in the beginning, but I haven't lost any more weight in the last few weeks and my appetite is coming back. So if you saw me on the street, you wouldn't even know I have cancer, let alone Stage 4. I feel good and I'm ready to enjoy life.
One thing I've learned from this is to really appreciate everything. Just the little things have a huge impact on me now. I told Kaela, don't get mad at me when we are shopping in a store and I just break out singing and dancing! Or when I just book a last minute trip because it's some place we always wanted to go to. Life is short, no one lives forever, cancer diagnosis or not! Money is here one day and gone the next. My Oncologist stated that once my first set of scans is in and looks good, I can travel and I cannot wait. Kaela has yet to go to New York, and we can drive there so I'm hoping to take her there for Memorial Day weekend. Jon and I are also hopefully going to Mexico in June as a belated Honeymoon. More traveling plans include Europe with Kaela and Florida to visit with my Grandmother.
I'm positive, most days, I still get angry, I still don't understand why me, I still get mad that I'm fighting this horrible disease, but I appreciate life more. I love harder and I enjoy more. To Kaela and Jon - I love you more then life itself, I thank you for putting up with me so far and I look forward to all of the fun times we are getting ready to have in the future!
Thank you all for your continued love and support. The calls, FB messages and texts are all appreciated, even though I don't always respond, please know I love you all. Below is our donation page, my medical bills are mounting, not all of my medical expenses are covered under my insurance so every donation counts! Thank you all who have donated already! <3
https://www.youcaring.com/nicole-russell-543263#.VvV3G_PDzhe.facebook
The only bit of hope I had was my gene mutation and being able to take Tarceva, a targeted therapy chemotherapy pill. I really thought it was going to be easier then it was. I thought it's a pill, I don't have to go through actual chemo - so this should be a breeze. Then I started researching online the side effects, I read other cancer fighter's stories of their experience on Tarceva and it all scared me. A rash, especially on your face was almost guaranteed to occur and could occur the entire time I was on the pill. Diarrhea is a big side effect - great! Dry skin, another side effect, so much so, that you have to moisturize your entire body twice a day to keep it in check. I thought, I can handle this, I will keep my body lotioned up at all times and the rash should be minimal. Drinking water is also key in this side effect battle, so I drink 80 ounces of water a day, which is a task for me as I do not enjoy water at all, but I can definitely tell the difference when I am not hydrated and so can my skin!
The first week I took the pill - my symptoms vanished, my nagging cough disappeared, my pains were gone, my chest no longer hurt, my lymph nodes were no longer swollen and best of all, I could sleep! I thought, wow, this is great, I can do this! Then the worry that I was not going to get the rash kicked in. My Oncologist stated the worse the rash, the better the medicine was working. So the first week went by, no rash, then one day my face was pretty red - like I got a sunburn. I immediately went out with Kaela and Jon and bought some makeup - I don't normally wear anything but eyeliner and mascara but from my research I knew to buy some foundation for my rash so I could feel good about going out in public. The next day, the rash set in. I was no where near ready for it. It looked like I was a 12 year old pubescent boy...I had small whiteheads ALL over my face in addition to red splotches everywhere. It wasn't so bad at first, I thought I could get through it unscathed. I was wrong. It got worse as time went on and for a good 2 weeks, I was in a scary depression. No one likes to look in the mirror and hate what they see. My face itched, it was swollen, it was full of the rash, it didn't matter how much lotion, almond oil or coconut oil I put on it. I had to take Benedryl at night to sleep because my face itched so bad. But you know what kept me pushing? Kaela and Jon continued to tell me how beautiful I was and how temporary the rash was. Red face pic below!
I'll admit, I had days where I wanted to give up, I wanted to stop taking the pill. I was in so much misery, but the truth was, I wasn't in pain and that's what was important. I did have many breakdowns where I said forget this, I'm done, let the cancer kill me. It scared Jon to death and I can't blame him. I got in many fights with my mom because of my depression and I felt like a failure of a mother because I wasn't doing the normal things I did as a mom for Kaela. I couldn't function and it was eating me up inside. The rash spread to my chest and back. Finally just last week my face rash subsided some. As long as I keep lotion on my body, the rash isn't bad and is able to be covered by makeup and I look halfway decent! It's still there but not half as bad. I am now on my 2nd month of Tarceva and managing the side effects as best I can.
The funny thing about cancer is it brings out the worse and the best in people. To be able to manage both is a miracle, but I am getting pretty good at it. I have my days like yesterday when a little cough makes my anxiety go through the roof, or a pain I haven't had before makes me think the pill isn't working. This is my daily life and most likely all cancer fighters go through the same feelings. Any small thing and we worry about it non stop.
My Doctor's appointments have been good, I am going to Duke and have had a great experience with them so far. My Oncologist is positive that my first set of scans will be good and this makes me happy. I will have my first set of scans mid to late May to see how well the Tarceva is working. In a lot of people, it shrinks the tumors and kills the cancer cells. I will never be cured. But I hope to one day be something called NED which means No Evidence of Disease.
My relationships with my family have improved. I feel closer to my mother now then I ever have. Same goes for Jon. My relationship with Kaela is the one I treasure the most. She's a young teenager who doesn't deserve to see her mom go through this and the fact that she doesn't have a choice breaks my heart. The one good thing out of all of this is it is making our communication better. A lot of teens shut out their parents and although she wants to, I won't let her. We have a future full of fun things to do and see, traveling to do and just days of being silly that she is going to have to endure with me!
I returned to work last week after being out since late February. Being in the house worsened my depression. I have always worked my entire life since I was a teenager so not working for so long was different for me. I needed to get back in the real world, to get some social interaction and to get out in the fresh air. I'm tired sometimes, like this morning when getting out of bed was the last thing I wanted to do, but staying in the house is worse for me. I could file for disability and receive it based on my diagnosis but then I wouldn't have the good health insurance that I do through my job, and that is most important right now. I figured out the best thing for me mentally and physically is to live the life I was living before my diagnosis with some changes here and there.
It's funny because I get a lot of messages, texts and calls of friends/family wanting to visit and see me. If you google Lung cancer Stage 4, statistics show that 50% of those diagnosed with Stage 4 Lung Cancer die within a year. To educate you, those statistics are so outdated and no longer apply due to all the new developments in treatments. For my friends that think they need to come visit me asap because they think I won't be around for long, please know I will be around for a long time! I hope to be on Tarceva for a long time and after that there are more treatment options available for me including more targeted therapy. I do not look like I am sick, yes, I've lost 20 lbs thanks to the depression and appetite changes that Tarceva gave me in the beginning, but I haven't lost any more weight in the last few weeks and my appetite is coming back. So if you saw me on the street, you wouldn't even know I have cancer, let alone Stage 4. I feel good and I'm ready to enjoy life.
One thing I've learned from this is to really appreciate everything. Just the little things have a huge impact on me now. I told Kaela, don't get mad at me when we are shopping in a store and I just break out singing and dancing! Or when I just book a last minute trip because it's some place we always wanted to go to. Life is short, no one lives forever, cancer diagnosis or not! Money is here one day and gone the next. My Oncologist stated that once my first set of scans is in and looks good, I can travel and I cannot wait. Kaela has yet to go to New York, and we can drive there so I'm hoping to take her there for Memorial Day weekend. Jon and I are also hopefully going to Mexico in June as a belated Honeymoon. More traveling plans include Europe with Kaela and Florida to visit with my Grandmother.
I'm positive, most days, I still get angry, I still don't understand why me, I still get mad that I'm fighting this horrible disease, but I appreciate life more. I love harder and I enjoy more. To Kaela and Jon - I love you more then life itself, I thank you for putting up with me so far and I look forward to all of the fun times we are getting ready to have in the future!
Thank you all for your continued love and support. The calls, FB messages and texts are all appreciated, even though I don't always respond, please know I love you all. Below is our donation page, my medical bills are mounting, not all of my medical expenses are covered under my insurance so every donation counts! Thank you all who have donated already! <3
https://www.youcaring.com/nicole-russell-543263#.VvV3G_PDzhe.facebook
Subscribe to:
Posts (Atom)