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The end of a blog….

I went back and reread my post from earlier this week and realized that I needed to update on how things are going now that I am at home and no longer working.  The other update came to be because several of my “breast cancer friends” and I were talking about the month of October being Breast Cancer Awareness, but that most people no not see the ugly side of cancer.  They see the fun pink side that is broadcast on TV and through advertisements for October.

I first need to say that my husband deserves a medal for everything that he has done for me.  He is working hard to put two kids through college and paying for it himself.  The money that we had saved up over the years to pay for the kids college education was depleted by cancer treatment which left me feeling terrible.  With me not working now, all of the finances are on him.

On top of the financial part, Nick is willing to help out with anything that needs to be done in the house if it will help me.  He will sweep and mop floors, cook (he cooks most of the meals now), dishes, bathroom cleanup… everything.  He takes good care of me and I adore him for it.  The kids have also stepped up and help out with chores around work and college classes.

Since quitting work, I am taking less pain medication.  I still have pain, and I still have flareups, but the intensity is greatly decreased.  This is because I am able to do things that I can, yet stop if I realize that it is causing my pain to increase.  This is made possible by being at home.  I can rest when needed and do things around the house when I am able.  This has helped me so much.

So, in short, I am no longer in the amount of pain that I wrote about in the previous post.  That post explained why we made the decision for me to be at home.  I still have to pace myself and cannot make firm plans because I never know what each day will be like until it gets here.  Working just took the pain to an unbearable level.

Nick and the kids and I are doing really well and I am thankful for them and for everything that they do for me.  I am also thankful for my mom who also helps out as much as she can.  Having a great family is a huge blessing!

The more that I have thought lately, the more I could see that this blog was coming to an end.  It started out as a way to keep family and friends across the county updated on my treatments and as an outlet for me.  I feel that I have reached the other side now where I am back to living life and I don’t “need” this outlet any longer.  The time has come that I am ready to move on with life and live each day to the fullest with my husband, children, and the rest of my family.

Thank you to all of my friends and family who have followed my blog for the past few years as well as the many people who started out as strangers but quickly became friends because of this blog.  This blog allowed others who have gone through the same illness to reach out to me.  We have encouraged one another and been there to laugh and cry through many different periods of our personal journey’s.  I will always treasure each of those friendships and will continue to read their blogs and follow their story.

The End.

Deb: Take 2

When I first started this blog in August 2012, I told myself that I would be truthful and not hold back when posting.  For the most part I have done just that.  My life has altered greatly over the last year (even though I am 3 years post diagnosis)  and I am going to go back in time a bit and try to put in words how life has changed post cancer treatment.

Around the beginning of the year I realized that the pain in my upper back and shoulders was getting worse.  This pain is called intercostal neuralgia and is caused by nerve damage from the mastectomy and even more so from the surgery to remove excessive scar tissue.  I have nerve damage on 5 levels bilaterally.  I was continuing to work but slowly the days were getting harder to make it through to the end.  I would go to my sisters house on my lunch hour so I could rest.  After work I would come home and go straight to bed to rest before I could eat dinner.  I was miserable and in pain all of the time.  Holding my arms up in order to type all day caused by back and shoulders to ache and burn terribly.  It is a burning pain that is hard to describe.  In addition to the back and shoulder pain, the neuropathy in my hands and feet were causing some increased issues.  For the most part, my feet and fingertips are numb, but I also get shooting, burning pain in my feet.  And trying to walk with numb feet can pose some dangers.  Steps are a problem and I have to watch carefully where I step.

In addition to the pain, I was having issues with memory and concentration.  I knew that I had “chemo brain” during and right after chemo, but I did not realize that it could sometimes worsen later on.  I was beginning to have problems at work with being able to concentrate and stay on task as well as suddenly having trouble remembering how to do certain things that I had been doing for two years.  At first I was blaming the increased work load, changes or updates to the computer program, interruptions from the constant phone calls, and even my coworkers.  I know that I alienated a few coworkers because I became short tempered and irritable.  For those who know me personally, you know that it is not the normal Deb.  Eventually I had to admit that the problem was actually me.  I had to look through my files and find my old “cheat sheet” from when I first started my job.  I had to look at it quite often and it was very frustrating.  I knew that I was not keeping up at work and that was causing my coworkers to fall behind as well because they could not do their job until mine was completed.

As if the above issues aren’t enough, the chemo brain/fog has also caused some issues with using the correct word.  It is very frustrating and embarrassing when you are in the midst of a conversation and your mind goes completely blank and you cannot think of the word that you are looking for.  A word as simple as tooth brush or refrigerator.  Or I can be talking and say the wrong word when I mean something completely different.   Oh..and throw in stress and everything worsens!  Stress is not my friend!!!

The post cancer Deb is a mess at times.  I am 40 years old and sometimes I feel like I am 80.  I am post-menopausal, have raging hot flashes, no sex drive, insomnia, trouble focusing, weight gain from the medications, bone loss, and probably other things that I can’t remember right now.  (That was a joke…kind of)

Chronic pain can completely sap you of your energy.  The life that I was living was not really living.  Nick and I decided that it was time for me to quit work and concentrate on me.  I do what I can according to the day and rest when I need to.  The biggest change for me has been learning how to say “No”.  When I am having difficulty with that, Nick steps in and says it for me.  He is not being overbearing.  He is just taking care of me and he knows me well and he can see that sometimes I am trying to do to much and he takes over and says NO.  I am grateful to have him watching my back at all times and making sure that I am doing what is best for me.

I am forever grateful to be alive..to have kicked cancers ass to the curb.  Believe me..I am thankful and grateful even if it seems like this post is full of problems and complaints.  This post is 100% honest.  I don’t want to sugarcoat everything and have another person out there who is secretly going through the same thing and feeling that she is alone and a wimp.  I want people to understand that even when you are so very thankful to be alive, sometimes coming to terms with the “new you” takes time to adjust. This is also true for your family, friends, and coworkers.

There are days when I feel as if I am battling my new post cancer self.  There are times when I am so proud of myself, of the things that I have done to try to empower and help other women going through the same journey.  Days where I am proud and know that I am strong and that I am a survivor!  Then comes the days when I am scared.  Scared that the cancer could come back..scared that it has already come back and I just don’t know it yet.  Some days I feel weak because I let the pain win.  The pain in my back, shoulders, and hips.  The implants that feel like cold, hard blobs on my chest.  Blobs that do not move.   I look at my new body and some days I am proud of my battle scars and other days I think that I look like a freak.

I always thought that once treatment (surgery and chemo) was over that all was good.  My hair grew back (even if it is still kind of patchy) and I am currently NED (No evidence of disease).  But for me that was when the hard part started.  During treatment I was able to hold on and go for the ride that my team of doctors controlled.  Now I am the one in control and sometimes I feel that my life is spinning out of control.  It is hard to process everything that I have been through especially when my brain doesn’t want to cooperate.

I envy the survivors who are able to work through all of the changes in their life with style and grace when for me it is a messy struggle.

 

 

 

 

My courage is stronger than my fear!

Last week, while in the shower, I found a lump in my right reconstructed breast.  The side that previously had the cancer.  I tried telling myself that it is just scar tissue.  I know that my body produces excessive amounts of scar tissue.  However, feeling this lump, that to me, feels absolutely huge, made me instantly sick to my stomach.  I hurried up with my shower and found Nick and had him feel it.  He also said that it was probably scar tissue, but urged me to call my oncologist.

I called the oncologist’s office first thing Monday morning and was told later that day that he wanted me to have a biopsy of the lump.  He also told me that it may turn out to be benign (non cancerous) but that he doesn’t want to take the chance.  I am scheduled for a biopsy on Wednesday, May 13th at 12:30. I am trying to stay positive, but it is hard.  This is more scary than the first time because I now know how hard the treatments are.  I guess I know so much now that the very thought of going through it again is terrifying.  I am learning that after the diagnosis of cancer, routine blood tests, scans, and possibly additional biopsies become a new part of your life.

To add to the biopsy, I also have 3 appointments for the month of May to go in for another series of intrercostal nerve injections for the nerve damage/pain from the mastectomy.  The first series last summer helped me tremendously.  After the surgery in December to remove all of the scar tissue, the pain started to return.  I have appointments for the injections on May 12th, 19th, and 26th.  May looks to be a busy month!

It is hard to not get discouraged by all of this.  Like I said in my last blog, Cancer is the gift that just keeps giving.

On a positive note, the new cancer survivors support group at the local cancer care center is taking off well.  I don’t remember if I mentioned this in my blog before, but I have been selected to be a patient representative for the cancer care center.  There are two of us, myself and another gentleman who had gastric cancer.  The two of us leading the support group which is for survivors of all types of cancers.  We are also including the family/caregivers of the cancer survivor with the hopes of eventually having a group for the children and one for the spouses or other adult family members.  There are already such groups in the bigger cities, but driving to Louisville is difficult for most people in our area.  For this reason, we feel it is important to get this new group going so the local cancer care center can reach those in the rural areas.

My goal for the month of May is to not allow fear to rule my life.  I have to remind myself daily that my courage is stronger than my fear.

What a year!

One year ago today I had my breast biopsy and was told that given the imaging, and the biopsy sample, that the doctor felt there was a 5% chance or less that it was NOT cancer.  He told me to go ahead and decide on a surgeon and prepare myself.  I remember being in shock and just plain scared.  My husband, mom, step-dad, and older sister Monica went with me for the biopsy and when I came out from the back I walked right past them in the waiting room and went outside.  I sat on the bench and just started to cry.  How do you tell your husband, mom, and sister that the doctor is pretty sure that you have breast cancer at age 37?  I cried for a few minutes and then dried it up and tried to be positive.  Two days later on July 17th I found out the news…my biopsy was positive for Invasive Lobular Carcinoma.  I don’t think I will ever forget that awful feeling that hit me when I was told for sure that I had breast cancer.

Here is a “pre-cancer” pic:

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The next month was a whirlwind of doctor appointments, tests, and surgery.  It is surprising how quickly your entire life can change in a heartbeat.  In the midst of the appointments, surgery, and chemotherapy treatments I thought that life would never be “normal” again.

During treatment:

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Now that I am on the other side of treatment I am finally seeing “normal” again.  The past year has been a roller coaster ride for sure.  I wish that this breast cancer journey was a journey that I never had to take, but that was not how it worked out for me.  The cancer journey showed me that I am married to my life mate, my best friend, the love of my life.  Nick was with me every single step of the way.  He held me when I cried, he held my hand, held me when I was scared, encouraged me with positive words, and was by my side for every appointment, surgery, and treatment.  He was my rock.  I am sure when he said the words “through sickness and health, good times and bad” during our wedding ceremony 21 years ago he never thought that that he would be supporting me though sickness and some of the worse times that a family can endure.  But he did it.  He was there through the sickness and the bad times and I can never repay him for all that he had done for me.

Cancer has changed me.  I don’t believe that a person can go through cancer and the resulting treatments and not be changed in the process.  I now know just how strong I am.  I am no longer afraid of so many things.  (I am still deathly afraid of snakes though…cancer can’t even get rid of that fear!!!!!) I am living life to the fullest.  I am loving my family, enjoying time spent with them, letting the little things go, and being thankful for each and every day that I have with my family and friends.  I do not want to waste a minute of my time being mad or angry.  I want to enjoy every day to the fullest.

I still have a fear deep inside of me that one day the cancer may come back.  I don’t think that the fear of recurrence will ever leave me.  I am able to bury it deep sometimes, but at the strangest moments it rears it’s ugly head.  I believe that this is something that I will have to live with for the rest of my life.

I again would like to thank each and every family member and friend who has helped me and my family through out this past year.  So many people showed their love by sending flowers, cards, t-shirts for cancer awareness, food,  other gifts, phone calls, e-mails, and texts.  Your kindness meant so much to me and my family.

I am now in a happy place.  I am healthy again, cancer free, and feeling more normal again.  I am getting my strength and energy back.  I am back to work…with a new job that I am loving (both the job and the people there).  What a difference a year can make.  This exact day one year ago I was devastated.  But I was stronger that I ever thought I could be.  I beat cancer.  I kicked its ass!  I did it.

Here I am today…one year later.  I have hair again!  Wild and crazy hair…but HAIR!  haha

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Tomorrow is the day!

I can finally wear shows again so tomorrow is the day!  The day to start back at the gym after over 3 weeks away due to the surgery to replace my tissue expanders and then the operation on my toes.  I am ready and excited to get back.  I am ready to get back on track with my new healthier lifestyle.  I can honestly say that I am sad to have been away from the gym as long as I have been and I am excited to get back.

I am so thankful that my toes are finally not hurting me every day…they are still tender when bumped, but there is a huge improvement over last week!

I hope that I will be able to update with some additional weight loss soon!!

Guest blog from my sister

I have asked several of my family members to write something for my blog.  The following is from my younger sister, Amanda.  I did not realize how emotional it would be to read someone else’s perspective on my diagnosis.

From Amanda:

Cancer. When you hear this word it makes you sick deep down in the pit of your stomach. When someone you know has cancer it’s a million times worse. When I heard my sister had cancer, breast cancer,  just like our mamaw, I was scared and helpless. My mind raced with a hundred questions:  How far along is it? Did they catch it in time? What if she dies? I know that my sister is tough and can get through anything, but sometimes that’s not enough – what would I do if something happened to her!? What would Mom do? Her kids? Her husband? Every night I prayed that none of us would have to find out. I prayed for strength for her and her family and I questioned God. I know you’re not supposed to, but sometimes you have to wonder how something so awful could happen to such a selfless person.  But it did. And she beat it. It wasn’t easy, but she did it. As she was going through treatment I felt so helpless. There just wasn’t anything that I could do that I thought would help. I tried to do things that might make it a little less worse like making sure to call and visit every time I had a chance and to pick up library books, but it didn’t seem like enough.  I was so amazed by her strength and positive attitude –  she handled it so much better than I ever could. During her treatment her doctor suggested that I along with her daughter start getting mammograms and MRIs at the age of 27. Well I was already 27 so I had to start right away. Going in for the testing was so nerve wrecking. Not only did I not know what to expect but what if they found something? I know that was the point, to detect as early as possible but still it wasn’t something I wanted to do, even though I know it needed to happen. The testing wasn’t so bad. I even fell asleep in the MRI machine – don’t ask me how with all that noise! The mammogram technician told me not to be surprised if they asked for more films, but that didn’t make me feel any better when the radiologist requested them. I was in full panic mode when I was sent for an ultrasound. Obviously there was something to be concerned about or all that wouldn’t be necessary. I couldn’t get any real answers and then after the ultrasound I was told that everything looked fine but I needed to come back in 6 months. WHAT!? My logical/rational self keeps telling myself that I need to do it for comparatives – we can’t know what normal is if we’ve never had a comparison right? Even though I have myself pretty much talked into that thinking, there is still fear deep down there.  There is potentially something or else they wouldn’t have me come back so soon – I could have just waited until next year. I’m hoping that the doctor is just being extra cautious due to our family history, and I’d rather have a doctor do that then brush a potential danger off as nothing. I’m so thankful that my sister had a doctor that was perceptive and caught her small sign of potential problems – so many doctors could have brushed that off – then where would we be?

August 29, 2012

THE DAY THAT I WILL NEVER FORGET

Written Aug 18, 2012 9:49pm

August 17, 2012 @ 3:08pm  That is a date and time that I will never forget.  That is when I received the call that I had nervously been waiting for.

I will back track for a minute here.  This past week has been a roller coaster.  There have been times when it seemed to fly by, and other times when everything seemed to be in slow motion.  I went to see my family doctor on Thursday, August the 9th and during a routine exam she said that I had an indent in my right breast and because of family history she recommended a mammogram.  I had a diagnostic mammogram on Tuesday and after 4 views I was asked to wait while the tech talked to the radiologist.  When she came back in she told me that she needed to take a couple more pictures.  I was then again asked to wait and to not get dressed yet.  This is when I started to have a small amount of worry sneaking in on me.  She again came in and said that she needed a couple more views.  Again I was asked to wait while she went to talk to the radiologist.  I was then escorted to another room when she told me I would be having an ultra sound. Another tech came in the room and started.  After a while she  told me to stay there while she went to speak to the radiologist.  Now the worry was really starting to set in.

This time when the tech came back in she had the doctor with her.  He said that he wanted to take another look.  When he was finished he asked me to get dressed and then said that the tech would bring me to his office to talk.  By this time I am starting to get upset.

Once in his office he brings up mammogram images of my breast on multiple screens and starts pointing out an area that in his words “was very worrisome” He said that based on the irregular shape, shadows, and the indent on the skin that I needed to be scheduled right away for a biopsy. He walked me out to the front desk and asked them to schedule me for a biopsy the next morning. I was now officially scared.

My husband took off work the next day so he could go with me for the biopsy.  My mom, step-dad, and older sister all met us there for moral support even though we would not know anything for sure that day.

I was called to the back and everything started pretty quickly.  Once the biopsy was complete the radiologist asked me to go ahead and choose a surgeon that I would like to see.

I received a call from my family doctor’s office that evening which shocked me because it was after hours.  They told me that I had already been scheduled for an appointment with a surgeon and that based on my tests that they felt that there was a 95% or greater chance that this was breast cancer.  They would know for sure what we were dealing with on Friday.

Now back to Friday at 3:08pm.  The radiologist calls me and said that he has been talking back and forth with the pathologist all day and he wanted to let me know that it was definitely breast cancer.  He said that I have a rare type that does not show up on mammograms when the cancer is still early.  He told me that it is a “sneaky” cancer that hides.  He then said that I would need to see a surgeon right away and that in addition to the surgery they decide to do (mastectomy or lumpectomy) they would also be removing lymph nodes to test.