I wrote the below post back on 1/18/13 during my surgery and expansion recovery and never published it. So in the spirit of our 19th wedding anniversary today, I want to share what an amazing man John is and how he stuck true to our vows through better or worse.
I have focused so much on myself through these posts that I have neglected to share how wonderful of a husband I have.
Back story first...
We met in 1995 at age 20 as acquaintances at one of his gigs. My sister, Mary, was friends with the other two guys in the band and I would go with her to rock out and stage dive to their music. I know...many of you can't picture that but I was a bit more free-spirited back then. Sadly, I didn't notice him at the first few gigs but he noticed me. John went up to Mary and shared his interest in me. She let him know that he was not my type. (I did not learn any of this until we were dating for a while.) A few gigs later, we connected at one of his outdoor gigs. There was this old metal swing there that he would give me underdogs while I was swinging. Please tell me you know what an underdog is...and get your mind out of the gutter. :) That night we were inseparable! We were together for two years and then married in 1997. Yes, we were young and some people had their concerns, but it was right for us.
Skipping forward...
We had two boys in 2003 and 2005 where he stayed home and cared for them while I worked. Our system was a bit unorthodox back then and more recently has come to the forefront in television to be a cool thing. Trust me, John didn't care whether it was cool or not...he wouldn't have changed a thing and misses that time with the boys now that he is working full-time. I'm going on and on but he has done so much for me and our family that, frankly, I just have to brag. :)
Now...
I know that he is going to hate that I am talking about him so much, because he is a modest and humble man, but he has been courageous and strong through this journey with me and I want to share that with all of you. I have focused so much on myself that I have taken him for granted during this difficult time for me and our family. He has been unbelievable through it all. He was loving and comforting when I got the diagnosis. He was with me at the doctors appointments to help me grasp the vast amount of information that was given to me. He was by my side in the hospital after surgery and slept on a very uncomfortable recliner every night. I can't image what it was like for him to watch me in such pain and not be able to do much to make it go away. If it was the other way around...I would have been a mess.
Now, Now...
That was written 3 1/2 years ago and John still continues to be my rock. I'm in a better place now physically and mentally and could not have made it through without my best friend fighting right along side me. I love you, John, more than you know! I look forward to many, many more years with you as we do life together through thick and thin. Happy Anniversary!!!!
Caregivers of cancer survivors are not recognized enough for their pain and struggles during a very difficult time for their loved ones. I ask that you take a moment and think about someone who was, is, or may someday be your caregiver or a caregiver of a loved one...we all can name a few. When you see them, say thank you for their enduring strength.
Thank you Dad for caring for Mom through lung cancer and now through numerous medical issues. Thank you family and friends of Debbie H., Suzette B., Bonnie R., Angie N., Tina S., and Amy K. for being by their side while they fight or have fought and won against breast cancer.
Tuesday, August 23, 2016
Friday, July 11, 2014
2 Year Survivorship Anniversary
Today, two years ago, I was told that I had breast cancer, and life has not been the same since. I don’t think I will ever forget the moment reality hit and I was scared for my life, but that didn’t come until two days later. The first tumor diagnosis didn’t faze me too much (I didn’t know it was there and it was very small); it was when the second lump/tumor (the one I originally went in to have checked out) came back cancerous as well.
I’m glad to have this day to recognize as it allows me to reflect back on the journey and see how far I have come and what kind of person I have become because of it. I first need to celebrate this day…Woooo Hooo!!...Thank you God!!...Life is Good!!! This anniversary date is a big one according to my oncologist. With the aggressive nature of my type of cancer, the probability of it returning is at its highest in the first two years. From there, the percentages drop as each year moves further away from diagnosis.
This journey has challenged me both physically and mentally. I am proud of how I persevered through all of the physical pain from chemo sickness to surgery recovery to radiation 3rd degree burn. I never really was scared about each procedure in and of itself. (I may have to go back and read some of my previous posts to confirm.) I agree with the phrase “Ignorance is bliss.”, and believe carried me through because I look back now and sometimes don’t know how I did it. I guess when you’re faced with it; you just do what you have to do. Humility has been my greatest positive. Having no hair and no boobs and packing on 40 pounds proved to me that I am still the same person regardless of the physical changes. It gave me a perspective to look past other peoples differences and know that they are just like me. Humbling myself has allowed me to let go of the pressures of being perfect (as there is no such thing). I make mistakes and it does not make me any less of a person. What liberation!!
As for the mental/emotional challenges, I believe was/is the hardest of this journey. For the longest time I was not emotionally equipped to express my thoughts and feelings. It either came out as anger or depression, isolation or avoidance. My journey has put my emotional health to the test and I have grown tremendously because of it. I’m not saying I do everything right by any means, like I’m “supposed” to, but more often than not, I will stand up for myself and let my thoughts and feelings be known. I seem to have this inner strength that I didn’t have before. In these two years, like I have said before, my emotions have been a roller coaster ride. I have gone from having the most confidence in myself to debilitating depression. From looking forward to my future to not wanting to be here, I deal with both extremes from time to time but right now I am in a good place and I see my future again.
The fear of the cancer returning filled my thoughts everyday until most recently. I would check for signs of lumps/bumps on my breast and under my arms multiple times throughout the day. Whenever I had an ache or pain anywhere on my body, I would think it was my cancer coming back. This type of thinking basically put my life at a standstill. I did not have a desire to set goals, plan for the future or try to be happy for the fear that once things went back to "normal" then that is when the cancer would catch my by surprise. I didn't want any more surprises. I have noticed over the past few months that I do not think about it as often, which means at least once a day I am somehow reminded. That is progress! It doesn't consume me like it once did. I have been told by other survivors that the fear does subside over time. I look forward to when that happens for me.
The journey continues. I am still taking a hormone pill to suppress estrogen and will probably have to for 8 more years. I have another reconstructive surgery scheduled for July 28, 2014. The plastic surgeon will do some fixes to make my breasts have a more natural appearance. From there, I hope to be able to get my nipple tattoos no later than the end of this year, but sooner would make me happy.
I want to express my appreciation for the love and concern for me these past two years. I may need to alter what I said earlier...I think learning that I am loved has been the greatest positive from this experience. I cherish and relish in the love and support from my entire community of friends and family. I love each and everyone of you too!
Tuesday, May 20, 2014
Phase II of Reconstructive Surgery
My bilateral mastectomy was done on 12/12/12 along with the first phase of reconstruction which was placing the tissue expanders under the pectoral muscles to stretch the skin in order to accommodate the future implants. On 3/31/14, the tissue expanders were replaced with silicone implants. Doing the math, it was almost 16 months in between surgeries. Let me say that the second surgery was by far easier than the first; however, it still was not pleasant as it brought back memories of the first surgery and recovery. The first week of recovery was rough as I was on pain killers and hardly remember that week. I was in such a fog that, to this day, I only remember bits and pieces. I dislike that feeling...not knowing what you have done or the people you have talked to. I am blessed to not have an addictive personality when it comes to medication because it would not be a pleasant life to live.
The second week got easier with less and less pain. I was on medical leave for only two weeks this go round...shows how the healing process was much easier compared to the six week recovery time for the first one. The thing that absolutely sucked was that I could not shower for three weeks because of the stitches. That doesn't mean I didn't have good hygiene...it just meant that the process of getting ready took so much longer. I was so happy when I was able to shower...I think you ladies can understand what I'm saying. :)
This posting puts me at seven weeks out from surgery. I met with my plastic surgeon at six weeks to check progress and to determine next steps. He is pleased with the healing; however, I have to wait another six weeks for further healing and for the implants to settle. Hopefully, by then he will be able to make a few minor tweaks to some problem areas. I'm not sure what that looks like though. To me it would seem like another surgery but not as invasive. I will keep you posted when that time comes.
My doctor did ask if I wanted nipple reconstruction, but I let him know that I am going to use a tattoo artist in St. Louis who specialized in nipple tattoos. He affirmed that his tattoo work would not be as good as a tattoo artist, and wants to see the completed work. I guess he is curious. :) Sadly, I don't think this step is going to happen for some time...maybe late fall. I want to make sure that every minor flaw is fixed to my satisfaction and that my breasts have settled in their place before I have permanent nipples put on. I want the tattoos to be as symmetrical as possible since this step will come out of my pocket at an expense of probably $250-$300. (Insurance will only cover this process if done by a doctor.) I have accepted this fact and am prepared to pay, as I want the nipples to look as real as possible since I will have these the rest of my life.
I'm not under the illusion that my breasts will look anything like someone who gets a normal "boob job". The differences are that all my breast tissue and nipples were removed and the implants are under my pectoral muscles and I was radiated on one side which will make my breasts asymmetrical; unlike just having implants inserted into existing breast tissue and over the pectoral muscles. I'm doing my best to remember how much I didn't like my large breasts to begin with and seeing the positives in what I have now. All in all, I would say I am pleased with the results thus far and am eager to finish the process so that I can close this chapter of my cancer journey.
Two year milestone (from diagnosis) only 52 days away!!!
Friday, March 7, 2014
Breast Cancer Retreat
I attended a breast cancer retreat last weekend (Feb. 27 - Mar. 2) and it was exactly what I needed!!
I have to tout this nonprofit organization called Sister's HOPE (Healing Opportunities through Personal Enrichment) and it's founders because it provides a much needed service to breast cancer survivors. Warning: I'm basing these next few sentences from recollection, so I hope my brain hasn't failed me like it has after treatments. This organization was started by one sister who was diagnosed with breast cancer and did not know what to do next after treatments. (I totally understand where she was coming from.) She wanted/needed something that could help women move forward in their new role as a survivor. After she passed away, her two sisters and parents are keeping her dream alive by continue this organization. What awesome people they are to change their lives in order to better others' lives!
I came to the retreat with unsettled thoughts and feelings about my life as it is and for my future and left with attainable goals to pursue; strength and encouragement; and amazing, lifelong sister survivors.
The weekend started with us telling our stories: where we've been and where we are currently. There were eight participants and four volunteers. This night was draining. Hearing the struggles, pains and joys of the other women drew me closer to them right from the start. We all endured so much during treatments and life itself. It was inspiring and encouraging for me to witness the ladies courage and vulnerability; and we didn't even know one another.
We stayed at the beautiful Schoolhouse Bed & Breakfast in Rocheport, MO. We had great meals prepared for us...LOVED that! We did yoga each morning and night; walked the Katy Trail; and my favorite part was receiving massages after a day and a half of intense self-reflection and exploration through group interaction. There was also time for laughter, tears and relaxation...oh...and show & tell. Several of us bared our breasts to show the work of our surgeons. This part was very helpful to me, since I am in the middle of the reconstruction phase. I learned a lot about the different types of reconstruction and nipple tattoos. I couldn't have asked for a better weekend. I am so glad there are organizations like this out there for survivors because we need it!!
I look forward to staying connected with these ladies as we each continue our journeys and hearing about the ups and downs of survivorship.
Update
My next surgery where the silicone implants will replace the expanders is scheduled for March 31, 2014. I'm excited for this next step! Prayers for a quick and easy recovery would be appreciated!!
I have to tout this nonprofit organization called Sister's HOPE (Healing Opportunities through Personal Enrichment) and it's founders because it provides a much needed service to breast cancer survivors. Warning: I'm basing these next few sentences from recollection, so I hope my brain hasn't failed me like it has after treatments. This organization was started by one sister who was diagnosed with breast cancer and did not know what to do next after treatments. (I totally understand where she was coming from.) She wanted/needed something that could help women move forward in their new role as a survivor. After she passed away, her two sisters and parents are keeping her dream alive by continue this organization. What awesome people they are to change their lives in order to better others' lives!
I came to the retreat with unsettled thoughts and feelings about my life as it is and for my future and left with attainable goals to pursue; strength and encouragement; and amazing, lifelong sister survivors.
The weekend started with us telling our stories: where we've been and where we are currently. There were eight participants and four volunteers. This night was draining. Hearing the struggles, pains and joys of the other women drew me closer to them right from the start. We all endured so much during treatments and life itself. It was inspiring and encouraging for me to witness the ladies courage and vulnerability; and we didn't even know one another.
We stayed at the beautiful Schoolhouse Bed & Breakfast in Rocheport, MO. We had great meals prepared for us...LOVED that! We did yoga each morning and night; walked the Katy Trail; and my favorite part was receiving massages after a day and a half of intense self-reflection and exploration through group interaction. There was also time for laughter, tears and relaxation...oh...and show & tell. Several of us bared our breasts to show the work of our surgeons. This part was very helpful to me, since I am in the middle of the reconstruction phase. I learned a lot about the different types of reconstruction and nipple tattoos. I couldn't have asked for a better weekend. I am so glad there are organizations like this out there for survivors because we need it!!
I look forward to staying connected with these ladies as we each continue our journeys and hearing about the ups and downs of survivorship.
Update
My next surgery where the silicone implants will replace the expanders is scheduled for March 31, 2014. I'm excited for this next step! Prayers for a quick and easy recovery would be appreciated!!
Tuesday, January 28, 2014
Trying to Move Forward
I think the lack of posts to my blog is for the very reason in the title of this post. I have been trying, struggling, failing and succeeding at moving beyond cancer. There is no one right way to accomplish this (which can be very frustrating) and I'm not totally sure as to what percentage I have moved forward. There are many days that I am thankful for the experience because I have grown from them but then there are those days self-pity sets in and I question "Why me?". I still think about cancer everyday wondering if I will be one of those to have a recurrence and where will it show up. I'm still hoping time will diminish these thoughts.
To get you up-to-date on the different events that have happened in the past 6 months since I posted last, I will try to summarize as best I can.
One Year Anniversaries
Cancer Survivor - July 11 I started a post that day to recognize the day, but I didn't find it to be a very cheerful recognition as it was the start to my "life-altering" life. I couldn't find any good to it at the time, except for sad and scary memories. However, I understand the significance of it now...if I was not diagnosed when I was, there is no telling how much further the cancer would have spread or what my prognosis would have been. I also get the term "survivor" now, because the day I was diagnosised was the day I started to fight and beat cancer. I chose to fight and not give in to it. I say this day is worth recognizing!!
End of Chemo - November 14 This day came and went. But I reflected a lot on various days of that 16 weeks to see where I was compared to the following year.
Double Mastectomy/Reconstruction - December 12 This day will be unforgettable to me. This was a major surgery that took a lot of recovery time; not only physically but also mentally. On this day I reflected on the pain and misery, but I also rejoiced that it was behind me.
Reconstruction Progress
I have been back to see my plastic surgeon a few times for him to check out my progress. The initial timeline to finish reconstruction was at a minimum of one year after radiation but more than likely longer than that. However, he is pleased with the healing thus far, so maybe the one year mark will be my surgery time which would be around the middle to end of March. If that is the case I will probably look for a time in April to fit into my families very busy schedule.
I did have two more expansions completed, so I have maxed out the capacity of the expanders. That puts me at a solid "D" size. And I mean "solid" literally...these things feel like rocks sitting on my chest. I was reassured by my surgeon that they will feel "more" natural once the silicone implants are put in. I know they won't be "normal" natural the way they used to be but I can live with that.
When I was scheduled for my first expansion after radition, December 3, 2013, I was very nervous about the pain I was going to experience because I remember all the other times I had expansions; my chest felt so tight that I couldn't take in deep breaths; my range of motion in my arms and even turning from side to side was limited; and I could feel the stinging pain of the stretching under my skin. But, of course, it wasn't too bad. I had my husband there to be able to drive me home and it really wasn't necessary for him to take off of work to be there after all. That's the way it seems to work though...you expect one thing and the opposite happens. In this case, I was glad it was the opposite of my expectations. I felt discomfort for only a couple of days and things felt normal again.
My second expansion was done on January 14, 2014, and I went into it differently. My mindset was 'It won't be so bad this time, so nothing to worry about or no need to have my husband come along.' I'm sure you know where I'm going with this...it was PAINFUL...especially the radiated side! The expander on the radiated side was placed higher and toward my side, so once it was filled it felt like all the saline went into my armpit area. I definitely felt like I maxed them out. I could barely move and I still had to put my shirt back on and get home. Leaving the hospital I was hunched over walking to my car because there was no way I could stand straight up. Driving home was not fun either. It took about 5 days before I felt comfortable again. Even now, I still feel the stretching and twinges of pain on the radiated side. The first couple of days, I could only sleep on my back. That was a just a small reminder of what's to come. It's amazing how you can forget most of the pain and nuances of recovery. I remember now and am not so excited for this next surgery. I'm anxious to get this all behind me, but not looking forward to the recovery process.
I am scheduled to see my surgeon again on March 4, 2014, and I'm thinking I will have a surgery date at that time.
Thyroid
I am still struggling with regulating my thyroid. I have had a couple of blood tests done at my request because I wasn't feeling right, but each time the doctor came back and said it is within the normal range. Well, now I have had it with this normal range crap because it doesn't feel normal for me. I think I have been too passive for too long and now I have got to get it figured out. I'm not happy with the way I feel. Currently my dosage is 125 mcg every other day and I think it still needs to be increased. I have an appointment scheduled for February 4, 2014 and hopefully this will be the start of better things to come.
As I re-read my post, I hear a lot of negativity and frustration. I guess a lot of this explains the funk I have been in over the past several months. Hopefully, I will have fun stuff to share sometime soon!
To get you up-to-date on the different events that have happened in the past 6 months since I posted last, I will try to summarize as best I can.
One Year Anniversaries
Cancer Survivor - July 11 I started a post that day to recognize the day, but I didn't find it to be a very cheerful recognition as it was the start to my "life-altering" life. I couldn't find any good to it at the time, except for sad and scary memories. However, I understand the significance of it now...if I was not diagnosed when I was, there is no telling how much further the cancer would have spread or what my prognosis would have been. I also get the term "survivor" now, because the day I was diagnosised was the day I started to fight and beat cancer. I chose to fight and not give in to it. I say this day is worth recognizing!!
End of Chemo - November 14 This day came and went. But I reflected a lot on various days of that 16 weeks to see where I was compared to the following year.
Double Mastectomy/Reconstruction - December 12 This day will be unforgettable to me. This was a major surgery that took a lot of recovery time; not only physically but also mentally. On this day I reflected on the pain and misery, but I also rejoiced that it was behind me.
Reconstruction Progress
I have been back to see my plastic surgeon a few times for him to check out my progress. The initial timeline to finish reconstruction was at a minimum of one year after radiation but more than likely longer than that. However, he is pleased with the healing thus far, so maybe the one year mark will be my surgery time which would be around the middle to end of March. If that is the case I will probably look for a time in April to fit into my families very busy schedule.
I did have two more expansions completed, so I have maxed out the capacity of the expanders. That puts me at a solid "D" size. And I mean "solid" literally...these things feel like rocks sitting on my chest. I was reassured by my surgeon that they will feel "more" natural once the silicone implants are put in. I know they won't be "normal" natural the way they used to be but I can live with that.
When I was scheduled for my first expansion after radition, December 3, 2013, I was very nervous about the pain I was going to experience because I remember all the other times I had expansions; my chest felt so tight that I couldn't take in deep breaths; my range of motion in my arms and even turning from side to side was limited; and I could feel the stinging pain of the stretching under my skin. But, of course, it wasn't too bad. I had my husband there to be able to drive me home and it really wasn't necessary for him to take off of work to be there after all. That's the way it seems to work though...you expect one thing and the opposite happens. In this case, I was glad it was the opposite of my expectations. I felt discomfort for only a couple of days and things felt normal again.
My second expansion was done on January 14, 2014, and I went into it differently. My mindset was 'It won't be so bad this time, so nothing to worry about or no need to have my husband come along.' I'm sure you know where I'm going with this...it was PAINFUL...especially the radiated side! The expander on the radiated side was placed higher and toward my side, so once it was filled it felt like all the saline went into my armpit area. I definitely felt like I maxed them out. I could barely move and I still had to put my shirt back on and get home. Leaving the hospital I was hunched over walking to my car because there was no way I could stand straight up. Driving home was not fun either. It took about 5 days before I felt comfortable again. Even now, I still feel the stretching and twinges of pain on the radiated side. The first couple of days, I could only sleep on my back. That was a just a small reminder of what's to come. It's amazing how you can forget most of the pain and nuances of recovery. I remember now and am not so excited for this next surgery. I'm anxious to get this all behind me, but not looking forward to the recovery process.
I am scheduled to see my surgeon again on March 4, 2014, and I'm thinking I will have a surgery date at that time.
Thyroid
I am still struggling with regulating my thyroid. I have had a couple of blood tests done at my request because I wasn't feeling right, but each time the doctor came back and said it is within the normal range. Well, now I have had it with this normal range crap because it doesn't feel normal for me. I think I have been too passive for too long and now I have got to get it figured out. I'm not happy with the way I feel. Currently my dosage is 125 mcg every other day and I think it still needs to be increased. I have an appointment scheduled for February 4, 2014 and hopefully this will be the start of better things to come.
As I re-read my post, I hear a lot of negativity and frustration. I guess a lot of this explains the funk I have been in over the past several months. Hopefully, I will have fun stuff to share sometime soon!
Wednesday, July 3, 2013
It's That Time of Year
It's summer, it's hot and the boys want to swim. What does that mean...swimsuit shopping.
Pre-cancer
For many years it has not been a fun venture finding that perfect bathing suit like it was in my early 20s when I had a very active metabolism. Trying on a bathing suit for me always brought about guilt and disgust with myself for not taking care of my body. I would sabotage fun at the pool with my boys by either not going at all or once I got there I didn't want to get up and into the pool for fear of people staring at me. Insecurity at its highest!
Post-cancer
A few days ago, I took my husband with me to find something since ultimately he is the one I am more concerned about how I look. We went to several stores and I never gave up because I knew I needed something for the holiday weekend. A few times John would ask if I was okay, knowing how prior years brought on depression. He is such a wonderful man! I told him that I was fine. I have accepted how I look (for now) and don't want it to keep me from having fun. He was a little stunned and taken aback. He said this was a totally different experience for him. I took that as a compliment.
It was difficult trying to find something that didn't over-emphasize my misshapen breast or irritate the radiated skin, but we did! I look forward to my time at the pool with my boys. I will have to let you know if the confidence sticks once I get there. :)
Next summer will be different with my new boobs!!!
Have a wonderful holiday weekend.
Pre-cancer
For many years it has not been a fun venture finding that perfect bathing suit like it was in my early 20s when I had a very active metabolism. Trying on a bathing suit for me always brought about guilt and disgust with myself for not taking care of my body. I would sabotage fun at the pool with my boys by either not going at all or once I got there I didn't want to get up and into the pool for fear of people staring at me. Insecurity at its highest!
Post-cancer
A few days ago, I took my husband with me to find something since ultimately he is the one I am more concerned about how I look. We went to several stores and I never gave up because I knew I needed something for the holiday weekend. A few times John would ask if I was okay, knowing how prior years brought on depression. He is such a wonderful man! I told him that I was fine. I have accepted how I look (for now) and don't want it to keep me from having fun. He was a little stunned and taken aback. He said this was a totally different experience for him. I took that as a compliment.
It was difficult trying to find something that didn't over-emphasize my misshapen breast or irritate the radiated skin, but we did! I look forward to my time at the pool with my boys. I will have to let you know if the confidence sticks once I get there. :)
Next summer will be different with my new boobs!!!
Have a wonderful holiday weekend.
Tuesday, July 2, 2013
Survivor Story
I wrote a brief article about my journey for my Susan G. Komen local affiliate. This will give you a summary of my battle to kick caner's butt. I can't believe it will already be one year from when I was diagnosed with breast cancer on July 11, 2012.
http://www.komenmidmissouri.org/get-involved/volunteer/survivor-story-christina.html
http://www.komenmidmissouri.org/get-involved/volunteer/survivor-story-christina.html
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