Survivors Guilt and stupid, ugly, dumb cancer

I know…..  I had said that this blog had come to an end on December 1, 2015.  But I find myself drawn back here over the last couple of weeks.  During my treatments this blog was my safe place, my place to share my darkest feelings.  I had moved past that time in my life, yet here I am again.  NO… my cancer has not returned.  I think I have what I have heard others talk about.  Survivors Guilt.  I have such a fear of recurrence, but on days like today, instead of fear, I feel guilt.  Guilt because I am continuing on and some of my friends are dealing with the ugly fact that they have had a recurrence.

Before my own diagnosis I’m not sure if I had my head buried in the sand, or if I was just ignorant when it came to breast cancer.  I thought that if breast cancer was caught early, and if you followed your doctors orders, that you would be cured and continue on your merry way.  That, I have learned, is bull shit.  I think for that,  I can thank the “October Pink has exploded everywhere” campaign.   I now know that despite fighting breast cancer with everything that you have got, it can still come back and attack your body and spread to so many other sites.  How?  Why? So much for early detection!?!?

Throughout the “life” of this blog, I met several other ladies who were battling breast cancer as well and we formed online friendships that were as real as any other friendship.  We were able to share the thoughts and feelings that we attempted to hide from our loved ones.  A couple of weeks ago one of those ladies passed away.  I remember that I was relaxing in a bubble bath and playing games on my phone when I had an email come through alerting me of an update on her blog.  Even though I knew that the unthinkable could happen at any time because she had been so very ill, I was still not prepared.  She was originally diagnosed with Stage IIB breast cancer, the same as me.  A couple of years later the cancer returned with a vengeance.

Back in August 2012 I met a very special lady, “MJ” while at the cancer center where I was about to start my treatments.  She is a breath of fresh air.  Always so positive.  Absolutely bubbly.  She was my pod mate during chemo.  We sat next to one another for 14 out of 16 chemo treatments.  She made me laugh (sometimes I would cry from laughing so hard).  She kept my spirits up, and I always looked forward to seeing her despite the reason for our meetings.  We understood one another.  We knew exactly what the other was thinking and/or feeling without the words needing to be spoken.

I remember feeling frustrated, sometimes angry, and sometimes jealous because MJ seemed to breeze through treatments and surgeries while I had one set back after another.  My chemo port never wanted to work right.  We would get a good laugh out of the “darn port won’t work again yoga” that I had to do in order for the tubing to cooperate enough for the nurses to use it.  I had complications from surgery which required several additional surgeries.  I was so happy that she did not have these issues and everything went so well for her, but I would get frustrated because I wanted to know why I was having so many problems.

Her cancer came back.  Stage IV.  I HATE those words. In 2012 she was stage IIB the same as I was.  Today she had to return to the chemo department.  I know from my own personal experience, when I go back to the cancer center for my appointments, I cannot even make myself look in that direction.  I have been back to the chemo department one time since I finished and that was to have my port flushed.  I can’t handle it.  I can’t.  Today, she had to go back in there.  I talked to her this afternoon and I tried so hard to be positive for her.  To let her know that I am here for her.  If she needs anything at all, I am here.  But let me tell you….when I got off of the phone with her I had the ugliest cry that I have had in such a long time.  I cried until I almost made myself sick.  I couldn’t drive.  I was so full of anger and I want to know “WHY??”  Why??  Why??  I don’t understand.  She has such faith in God.  She has reached out to him throughout this entire battle.  WHY?  I am so mad. I am so full of guilt.  I feel guilty.  Why would she even want to talk to me?  Is she wondering why her instead of me?

Where is the cure??????


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 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.





Biopsy Results

I went for my ultrasound and biopsy on Wednesday, May 13th.  I went with the thought in mind that it was just scar tissue.  I left the hospital more scared than ever.  Without going into detail because that day turned out to be very emotional for me and I am not confident that I can remember exactly was said, I was told that the mass measured approximately 1.9cm by 2cm and looked suspicious for a breast cancer recurrence.

I am very happy to announce that on Friday I received a call from my oncologist informing me that the area was a combination of scar tissue and fat necrosis.  Nothing to worry about!!!  If the lump becomes bothersome I can have it removed.  I do not wish to have it removed since my body appears to really like forming scar tissue and knowing my luck it would be replaced with an even larger amount!!!

My oncologist said that they will check it periodically to make sure that nothing has changed.

I cannot even begin to explain how I felt when the radiologist who did the biopsy informed me that she was worried that this was a recurrence.  Life stops.  I felt like I couldn’t breathe, as if something was sitting on my chest.  I had multiple thoughts going through my head… “I can’t tell my family this again”  “What will Nick do?”  “How are my kids going to handle this again???”  “I can’t bear to see my moms face if I have to tell her the cancer has returned”  “Why me?”  “Life is so unfair”  So many thoughts and so many emotions rushing in all at once.  The rest of the day was a blur as I tried to process everything.

I am beyond happy that I can now truly enjoy my sons high school graduation next week without this dark cloud hanging over me (all of us).  I am hugging my husband, children, and mom a little tighter, and telling them that I love them every day.

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.

Cancer – the gift that keeps giving.

I went for my four month check-up with my oncologist and I was given the results of my bone scan.  I was told that I have bone loss in my pelvis/hips and that I am at a moderate risk of a bone fracture.  The bone loss is a result of the chemotherapy and the anti-hormone treatment that I currently take.  The oncologist said that he was not happy with this result and suggested that I begin injections of Prolia (generic name denosumab).  His office was able to obtain the pre-authorization for the injection through our insurance I went back two weeks ago for the injection.  My mom went with me for moral support.  After the nurse gave me the injection (which burned!!) I had to sit while being observed for 10 minutes followed by an additional 20 minutes in the waiting room to make sure I did not have any adverse reactions to the drug.  Thankfully, I had no reactions at the time and was able to go back to work.

For the following two days I experienced some flu-like symptoms such as a headache and muscle weakness and muscle aches.  After that I felt pretty good and then about a week ago I started having increased back pain and burning pain and weakness in my arms and hands, and a general feeling of weakness overall..  Apparently this is a possible side affect.  Compared to the list of possible side effects from this drug I am doing really well.  Just reading the information sheet that the doctors office went over with me before giving me the injection was frightening.

Sometimes I seriously feel like cancer is the gift that just keeps giving.  I feel discouraged at times, and angry at times… but then I have to remind myself that I am alive.  I have to be positive and look on the bright side of things.  There are so many breast cancer sisters who have passed away and I know in my heart that they would give anything to be alive and with their family “suffering” with these little side effects that make me cry sometimes.  It is times when I think of them that makes me straighten up and just be thankful and stop my whining.

On a positive note…I have been named patient representative for our cancer care center.  There are two patient representatives,  me and a gentleman who battled gastric cancer.  We are leaders of the new survivors group at the hospital.  We had our first meeting on the 7th of April and I believe that it went really well.  We meet again on April 21st and I hope that more people attend and that we are able to reach a wide range of cancer survivors.

Post-op appt with surgeon

Nick and I met with Dr. L on Tuesday for my post-op appointment.  When Dr. L came in to the room I told him that we needed to talk…and he asked me if there was a problem.  I replied “Yes there is….we apparently have different definitions for the word “discomfort”  He laughed…I was being serious!  I also told him that if I ended up requiring any other procedures in the future that we would need to discuss definitions of words that are being used to describe my recovery to make sure we are on the same page!!  Nick just laughed at this exchange.

I found out that the reason that I had so much more pain than anticipated was that when he was releasing the scar tissue he found that I had extensive amounts of scar tissue that had formed up under my arms.  That is the reason why he had to make longer incisions that he planned to.  He also had to completely remove the implants and removed a scar capsule that had formed around each of the implants.  This capsule was making the implants feel rock hard.

Overall he said that the surgery went well and that I am healing wonderfully and he is very happy with how I look following this step of the reconstruction.  I am very happy that I am able to raise both arms up over my head…something that has been very difficult for me to do.  The removal/release of the scar tissue up under my arms has made movement in my arms much easier.

2 days post-op -Warning Picture included

I knew that this surgery was not going to be easy, but I have still been surprised at the pain involved.  Dr. L had told me that he would reopen the original mastectomy scars, but when Nick removed my bandages this morning the incisions were almost double what they were before.  I hope that he was able to remove or release as much scar tissue as possible.  I can tell that the implants have already moved back down into their natural location.  They can no longer be felt up under my collar bone. I am resting a lot and still taking my pain pills along with benadryl for the itching that is caused by the pain meds. I am going to add a picture here of what the incision looks like…so if you don’t want to see now is the time to x out of this link. The picture shows one side, but the second side is nearly identical to the one shown in the picture. You have been warned. IMAG0221

Surgery Update

Yesterday was a long day.  We left the house at 10:30 to head for the hospital in Louisville.  Surgery was scheduled for 2pm…  But knowing my luck..I didn’t go back until 3 because the surgery before mine went longer than expected.

Do you know how they give you that cocktail of drugs before they take you to the operating room so you will be calm and relaxed?  I have always had that and have had no memories of the OR at all.  Yesterday was different.  The anesthesiologist forgot to order it for me before hand.  I was completely aware of being taken into the OR.  I moved myself over on to the operating table and was fully aware when they strapped my arms down.  That is when I started to freak out.  I was crying and shaking.  Abbey, Dr. L’s Physicians Assistant came over and held my hand and asked if I remembered her.  I said “Of course I remember you, Abbey.  You are one of the sweetest ladies that I have ever met”.  She talked to me and was able to get me to calm down.  It seemed like it took forever before they started giving me the medicine and put the oxygen mask over my face.  The next thing that I remember is waking up in the recovery room.

When I had the bilateral mastectomy I had a reaction to the Lortab pain medication that they gave me when I was in the hospital.  The doctor added Lortab as a medication that I am allergic to.  Fast forward to yesterday and I have reacted similarly to the Lortab incident.   This time I was given Percocet.  They now feel that I am allergic to the acetaminophen which is one of the main ingredients in both pain pills.  I spent the entire night itching all over.  The doctor said that Nick could give me Benadryl for the itching.

I am back to sleeping in the recliner again.  Nick slept on the couch last night so he could be near me in case I needed anything.  He takes such good care of me,  He got up several times during the night to help me to the bathroom and to get my pain medicine.  I think that he is a keeper!

As I said before, I cannot see the results on the “foobs”.  The plan was to release the scar tissue so that the implants can fall back into a normal position.  The fat grafting was to suction fat from my abdomen and inject it into the breast area to make the foobs have a more rounded appearance and to fill in some of the indentions caused by the scar tissue.  I can see my abdomen already because it is not bandaged..and wow…it looks terrible.  Very bruised.  And extremely sore.

I can’t wait to see what the results look like.  I hope the recovery period is not long.

The countdown is on

My surgery is scheduled for Wednesday, December 10th.  Two days from now.  The closer it gets the more nervous I get.  I have to be at the hospital by noon.  Surgery is scheduled for 2 pm.  I hope and pray that this is my last surgery.

I am anxious to see the results and I hope that this procedure not only gets rid of the painful scar tissue, but also improves the look of the “foobs”.

I met with a new oncologist last month.  I absolutely love Dr. R who has been my oncologist since my diagnosis.  BUT….with appointments every 4 months, travel to Louisville is very time consuming and I end up missing nearly the whole day of work.  The road construction on I65 makes the drive up there and back home very long.  Add on top of that and the long wait,  a whole day is gone before you know it.  Now that I am finished with treatment, other than my every 4 month check-ups and targeted therapy with Aromasin, I started to look for a new oncologist closer to know.  A new oncologist recently came to E-Town and took over as Medical Director at the new Cancer Care Center and through our local support group I had heard many good things about him.  I made an appointment and Nick and I went to “interview” him to see if we felt comfortable transferring my care.  Nick and I went prepared with a list of questions.  We asked him what his standards of care were for a woman with stage IIB breast cancer and what testing he used to monitor for recurrence.

Dr. AL answered all of our questions and was very thorough in his answers.  He looked through my records and asked some questions of his own. He took his time and did not rush us at all.  After he answered all of our questions he printed out some information for me and then asked if he could examine me.

He explained to us that due to the combination of chemotherapy, having my ovaries removed, and taking the drug Aromasin, my chances for developing osteoporosis were much higher than normal.  He ordered blood work, x-rays, and a bone density scan.  He said that the bone density scan was needed to get a baseline of my bone health.  The blood work was ordered because after the strong regimen of chemotherapy that I had, I am at a higher risk of developing leukemia (a cancer of the blood) for up to 10 years. He will do a blood work-up every 4 months for my first 5 years after diagnosis.

My lab work results came back good.  The bone density scan showed that I am already experiencing osteopenia.  This means that I am experiencing a thinning of my bones due to the chemo, ovary removal, and drug treatment.  I am now taking 1000 mg of calcium along with 2000 units of Vitamin D3 a day.  I will have a repeat bone density scan in one year.  Dr. AL said that I showed some significant bone loss (considering my age) in  my pelvis and femur bones in both legs.  It was not enough loss to be considered osteoporosis (thank goodness!!).  We hope that with the added supplements along with weight bearing exercises that I can prevent the bone loss from worsening.

Overall, the appointment went really well and I am doing amazingly well for all that I have been through over the last 2 years.  Nick and I both felt confident in transferring my care to Dr. AL.  I do not have to see him again until March unless something else pops up.