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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.

 

 

 

 

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Guest post from my mom

The following is a guest post from my mom.

When I found out that Debbie had to have a biopsy, I really thought it would turn out to be fine..not cancerous.  I had a bad feeling from the start, but was trying to stay positive.  I went with Debbie and Nick on the day of the biopsy and I knew that day when we left that it was cancer even though I did not want to own up to it.  I still tried to stay positive.  But I knew.  When we found out for sure that it was cancer it turned out to be one of those days were you want to know “WHY?”.  Debbie is one of the people who puts everyone in front of herself.  She does for everyone else.  Why is this happening to her?  It was the worse day of my life.  You never think that you are going to see your child go through something like this.  I just wanted to be able to give her a hug and a kiss like when she was a little girl and make things be all better…but this time that wouldn’t help.  I told my sister-in-law Rosemary as soon as I knew that if there was any way possible for me to go through it instead of my daughter I would trade places with her in an instant.  It is hard to explain.  This is the hardest thing for a mother to do…to watch her child go through something like a cancer diagnosis and treatment.  It breaks your heart.

The day of the mastectomy surgery was a long and scary day.  We were so happy when Dr. McMaster’s came out and said that he was able to get the whole cancerous tumor.  Nick and I cried when we heard the news.  Dr. McMaster’s said that even though he had gotten the whole tumor that she was still going to have to have chemotherapy and I was upset at hearing this because I watched my daddy go through chemo and it is very hard.  But Debbie handled the news and the treatment so much better than most.  She handled it really well.  I knew that the treatment was going to very hard on her and I just wanted it to be over and have her be healthy once again.  I just tried to be really strong and to be there for her for whatever she needed.  I worried every day about her and said a prayer every day.  I tried to not cry and be upset in front of her even though I did cry in private.  I wanted to be strong for her.

I am so happy and relived that this is over for her.  It makes my world complete to be able to say that she is is OK and she is here with me and her family.  I just want all of the other things going on with her now to end like the pain in her toes and let her move on and live her life to the fullest again.  This is something that no mother should ever have to watch their child go through no matter how old their child is.

I am thankful that the hardest part is over and I am here for her everyday still and look forward to many more days ahead of us that will  be focused on fun and happy memories and putting this bad part behind us.

Now my youngest daughter, Amanda, and my grand daughter Beckie, will have to be monitored starting at age 27.  Amanda started early this year with her first mammogram and breast MRI.  She was told that she needed to come back for more imaging in 6 months and we are anxiously awaiting those results to make sure that everything is OK.  There is one area that they are monitoring but have assured us that it appears to just be dense tissue but because of Debbie’s history they are not going to take a chance on that.

August 29, 2012

MEETING WITH THE SURGEON

 

My husband, Nick, and I went to Louisville to meet with my surgical oncologist, Dr. McMasters on August the 25th.  I was very nervous about this meeting and did not know what to expect.  When Dr. McMaster’s came into the room the first thing he mentioned was the fact that Nick was wearing a Philly’s t-shirt.  It turns out that the doctor is originally from New Jersey and was familiar with Nick’s hometown in PA.

Dr. McMaster’s immediately put me at ease.  His voice and overall manner was very calming.  He explained to Nick and I about the type of breast cancer that I have (Invasive Lobular Carcinoma and an area of Lobular Carcinoma In Situ).  The first area is considered invasive because it has spread outside of the lobule where the cancer originated.  The second area (in situ) has not spread from the original area.   I was also told that the pathology showed that the cancer is estrogen and progesterone positive which is considered “good” and HER2 negative which is also considered “good”.

I was then given my options regarding treatment of my breast cancer.  Nick and I ultimately decided on a bilateral mastectomy and Dr. McMaster’s agreed with the decision.  He talked to us about what to expect and that he would be doing a sentinel lymph node biopsy at the same time.  The pathologist will look at the lymph nodes while I am still in surgery and if the first samples are clear of cancer cells he will not have to take any more out.  If there are cancer cells found in the first sample, more lymph nodes will have to be removed until they find clear ones.

Dr. McMaster’s then recommended reconstruction and asked if I would like to meet the plastic surgeon that he works with to see about the options available.  Dr. Little came in to speak to me and like Dr. McMasters, he was also very calming.  I will admit to being very nervous about this visit.  Dr. little told me and nick about the different types of reconstruction options available and after examining me we chose to go with immediate placement of tissue expanders at the time of the mastectomy.  These will be placed behind the muscle wall and I will have to go in weekly for them to be filled with a saline solution to slowly stretch the muscle to make a pocket for the final implants.  The final implants will require another surgery several months down the road.

Once this part of the visit was complete I was scheduled for pre-op testing on Thursday, August 30th at U of L and then my surgery will be on the following Thursday, Sept. 6th at 9:00 am at U of L hospital.

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.