Monthly Archives: January 2016

You Don’t get Cancer Alone

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Due to the recent call to attention on Mental Illness, I wanted to share with you my family’s experience with anxiety and PTSD.

When I was first told I had cancer, and Brian and I had decided on the mastectomy rather than the lumpectomy and radiation, it came time to tell my 3 girls.  It was early November 2010 and my youngest was turning 9 on the 6th.  I don’t remember when we told them exactly.  Was it in October or did I wait until after her birthday?  My surgery was the 18th so it was before then.  Emma, my youngest was my baby.  We had a special bond and still do.  She was at a tough age because she was old enough, and smart enough to know what cancer was, but young enough to still let her fears coast out of control.  She put on the brave face like her sisters did, and didn’t let me see how scared she really was.  I remember explaining to them that the biopsy showed it was very early stage cancer, and the type it was wasn’t even considered cancer.  I would be healthy and this mastectomy would give me a great boob job and we wouldn’t have to worry about cancer ever again. Oh to go back in time when I believed it would be that easy.  After my surgery revealed a stage 3 tumor in my chest wall and cancer in 11/12 lymph nodes, I had to now think about how I was going to tell my girls.  Hadn’t I just swore to them this was a piece of cake we would never have to worry about again? It wasn’t easy.  All three of them cried.  But Emma was the one who got angry.  She yelled at me for promising it was nothing to worry about.  How it wasn’t fair, and why did this have to happen to me?  I had no answers for her.  I was asking myself the same things.

Once radiation was over, and my hair started growing back, Emma saw that I was still me and her fears subsided.  Then November 18, 2011 came.  It was the one year anniversary of my mastectomy but it was also the day my sister was brutally murdered by her husband of 20 years. Poor Emma’s 10th birthday party was the next day and she was so excited about it. I remember calling my mother in law to come stay with the girls and then calling a close friend to sit with them until their grand mother could get there.  It was all so surreal.  My brain couldn’t wrap itself around the fact that my only sibling was dead. I too quickly had to say goodbye to my own girls so I could break the news to my parents, and then drive to NJ to tell my nephews they would never be going home again.

Emma seemed ok throughout it all.  My nephews moved in and everyone tried to make the best out of a hellish situation. Unfortunately our nightmare was just beginning.  My younger nephew was always difficult.  He had a very short, violent temper, and he began early on to torture Emma.  He would tell her he would duct tape her to a chair and stab her.  He threatened to kill her several times, and then say he was only playing around.  He began to have many other issues and for two years, I went from counselor to counselor trying to get help and a diagnosis.  I knew he wasn’t right. When he finally had a breakdown and admitted to hearing voices, he was sent to an inpatient clinic for a week who said he could no longer be around young girls and needed to get serious counseling and medication. A week later he was living with his Aunt and Uncle on his father’s side in Virginia.  Our biggest fear was that he would rape and kill Emma as this is what the head of Psychiatry at the clinic told us he thought about.  He was supposed to be on certain medicines and receive full day counseling but his Aunt and Uncle did not follow through with the doctor’s recommendations and to this day, he has not received any of the counseling he was supposed to have.

Emma started to become fearful and anxious over things that never bothered her before.  She could no longer sleep alone, or shower without her sister in the bathroom.  She began panicking about going to school.  She wasn’t eating and never felt good anymore. As the months went by, and as we got counseling for her and her Dr prescribed anti anxiety medication for her, she slowly became herself again. In October 2014, I had to go on another infusion chemotherapy and I lost my hair for the second time.  This scared Emma more than I thought it would.  I mean, she knew I was constantly on one chemo or targeted therapy or another for the past 4 years so what was different now?  I finally realized that losing my hair was scary to her.  As long as I looked like me, even if I was still going through treatment, she could think I was ok and the cancer was going away. Emma was diagnosed with PTSD and severe anxiety. The PTSD was from my sisters murder and the anxiety is from my cancer. It will always be something she will have to live with.  Eventually, she will be able to control her anxiety, but for now it is a battle we deal with every few months.  Today wasn’t a good day.  When I had to go in the hospital for the staph infection, she went into full panic mode again and didn’t want to go to school.  She was given Xanax to help her over the immediate panic feelings and went back to her counselor. She hates feeling anxious and afraid. She just wants to be normal (her words) and not feel so scared all the time. So this morning was not very pleasant trying to get her to go to school. I was screamed at that she hates me several times, and told I don’t care.  It was the typical morning when Emma’s anxiety is bothering her.

As her mom, it kills me to watch her go through this and not be able to help make it go away.  I can’t put on a band aid and kiss it better.  I feel helpless and I am wracked with guilt. After all, my cancer is to blame for her fear of losing me.  And my decision to take the boys in after Kim died caused her to be mentally abused by her cousin.  I have spent months and years going through what if scenarios. The bottom line is that there was nothing I could have done to prevent or change what has happened. I don’t want my 14 year old to have to deal with anxiety issues at such a young age. I want her to be having fun in school, acting boy crazy, and laughing with friends.  I hate Cancer for not only taking my life, but also hers. I hate my ex brother in law for causing such a nightmare of things that all stem from his selfish crime. I want my life back.  I want it to be normal again.  But it never will be normal again. This is the new normal and we all need to learn how to live in it.

Cancer doesn’t just happen to the person who gets it.  It happens to that person’s whole family, their friends, and even their co-workers.  Mental illness is the same way.  It may seem easier to just pretend it doesn’t exist, but that doesn’t make it go away and it won’t make it better. Please don’t ignore the signs of mental illness in yourself or in your family. Ask your Dr if what you are thinking and feeling is normal for you. Ask another Dr if the first one doesn’t take you seriously.  Keep searching and asking until you get the help you need. You aren’t alone and you don’t have to prove you’re super person in order to prove a point.

I hope that by sharing this personal story with you, it will help others going through a similar issue to keep the lines of communication open. It isn’t embarrassing or weird to have a mental illness. It only becomes so when one refuses to get help and ignores the signs. I wish you all peace.

Barb

The Road to Recovery

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Some of you may know that for the last few months I had been dealing with some medical issues.  The silicone implant I got when my reconstruction surgery was done 5 years ago, ruptured and was causing me pain.  I had it removed in December, but then I was lucky enough to get a staph infection which left me in the hospital for a week.   It hasn’t been a very nice start to 2016, but I am finally drain free, and IV through my port free!  It feels great to be able to sleep on both sides, shower normally, and wear my normal clothes.

I am also excited to get back to posting everyday.  Currently I am reading The Pillars of the Earth by Ken Follett.  It’s a big book at 973 pages and I am only on page 304.  I am enjoying the story line, but it is wordy at times which annoys me.  I want to scream “Get to the point!” when reading those areas.  It also doesn’t help that because I still have to be on pain medicine, I get sleepy, and reading those small words tends to relax me after 10-15 pages.

I have many books on my ‘To Read’ list that excite me.  I love the feeling of having so many options of new adventures, new characters to meet, and new topics to think about. I feel that is the best part of being a true book lover. The anticipation as you hold your next book. The questions that swirl through your head such as ‘Will I like this book, Will I grow to love this main character?, Will this be a journey I will always remember?’ All of these things and more make reading such a fantastic way to relax, unwind and unplug from today’s world with all its problems.  In a good book, you can escape to a better time, or immerse yourself in an adventure you wouldn’t have the courage for here in reality.   I love the escapism reading gives me.  While I am in the story world I don’t have cancer, I am not in pain, and all my fears go away.  That is the best part of reading.

I have learned to be patient with my recovery process.  The Dr. told me it would take 6-8 weeks to feel myself again, and another 6 months for my skin to look and feel good over my chest wall. I have had three major procedures to the area and it is going to take some time for my body to heal, especially with my weakened immune system.  Reading this long, chewy, book is helping me recover and teaching me patience at the same time.  I hope you are all reading something for yourself.  Not anything work related.  Something for pure enjoyment.  Let me know what you’re reading in the comment section.  I am always looking for new titles!

Barb

My Attempt at Poetry

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Snow falling, floating and swirling through the sky.

Crystalline marvels, no two alike.

Clinging to branches to break its fall.

Once hitting ground, no beauty remains,

Buried under its brothers

To be swept away by the plow.

I have never written a poem before, other than in some elementary English class. I wrote it in 5 minutes and it wasn’t to be taken seriously. My DD2 told me it didn’t rhyme and people like poems that rhyme. Maybe that is true, but I have read many a poem that has not rhymed and have liked them very much.

I admire true poets. The ones who make words dance across a page like Tschaikowski’s Sugar Plum Fairy. They have a gift that allows them to create imagery with words.  While I will never be in the same class as a true poet, it was fun to go outside my comfort zone and try a new form of writing. I recommend all writers to try a style you are unfamiliar or uncomfortable with in order to get your creative juices flowing.

Have fun!

Barb

 

Books I Read for Comfort

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I love to read.  I have loved reading since I was 9 and could ride my bike to the library downtown three times a week during summer break. Throughout my 41 years since, I have read thousands of books and there are a few that have become my favorite. The favorites are books I have read multiple times because when I read them, they calm me, make me happy or feel safe.  Through breakups, bad times as a teen, whatever the case may have been, this beloved group of books has seen me through tough times.

When I became a mother, I didn’t have the need to run to those comfort books as often, and they became the “books to read when you don’t have a new book”. When my oldest, Kait was in second grade, that now famous boy wizard entered the literary scene.  Kait and I read the books together.  We would go to the midnight book reveals and race home to begin reading that night.  As she grew older, we would discuss plots and search for hints by rereading the earlier books.  We watched the movies as they came out, and would either praise how close they stayed to to story line, or tear them apart for leaving major plot lines out.  Harry Potter became our shared obsession and it bound us together in a special way.

My two younger girls didn’t get this incredible gift.  They watched the movies first, then read the books.  My youngest *gasp*, didn’t want me to read the books to her because she wasn’t into them!  That did depress me for a few weeks/months/ok years, but I’m in a good place now.

While I was going through chemotherapy and radiation, I was incredibly fatigued, and at times nauseated.  My joints ached and my vision would get blurry after reading for 25 minutes.  The one thing that helped get me through the day, or sleepless night was having Kait read Harry Potter to me.  Sometimes we would go in order, and other times we would just pick a favorite. Kait has many creative talents and one of them is picking up foreign accents easily.  She would read the story in a British accent and I would close my eyes and be transported to a magical place where there wasn’t cancer, or pain. Listening to these books gave me a better sense of comfort and relaxation than any pain killer did.  It had the added bonus of bringing forth years of happy memories I shared with my daughter.

I feel sorry for people who don’t like to read.  They are missing out on so much. God bless authors and books!

Winter Sunrise

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When I woke up this morning at 6:30, I noticed the sky had so many layers of color mixed with layers of clouds.  The sun was just coming up and as the sky brightened, the colors changed from a dark indigo and purple, to a violet mixed now with rich orange and pinks.  It took my breath away.  It was a beautiful painting that changed every minute.  After doing what I had to do, I went back to watch the sky.  Much had changed in the 30 minutes I had been gone.  The layers of clouds were thinning, and the colors had changed to pinks, peaches and golds against a light blue sky.  The bare trees were perfectly outlined against the sky to show every single crooked branch, and curved limb.  It was a delicate lace work,, lowering to a thicker, stronger base.

Although I hate the cold of winter, and the piles of dirty black snow everywhere, I do love the beauty of the season.  The richer colors of sunrises and sunsets.  The bare trees exposing their nakedness for all to see. I love when the snow is falling and the earth is quiet as the snow muffles all sound.  Watching the pine tree in my backyard as it becomes laden with the weight of the snow, and seeing the birds making a mad dash to the bird feeder to fill up.

This mornings sunrise brought peace to my soul and I feel renewed.  2016 certainly hasn’t started well but I now feel like there is a light at the end of the tunnel.

Barb

Strength

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Throughout my cancer journey these past 5 years, I have been called “strong” many times.  So much so that I was wondering what does it even mean to be “strong”?  Where does strength come from?  I’m not talking about physicaI strength here. I am talking of emotional, spiritual, and mental strength.  The inner type we all at one time or another, have to lean on.

Having been in and out of hospitals and cancer centers, I have seen unbelievable strength come from some of the frailest of sources.  Is strength in that patient, enduring surgeries, and radiation burns and blistering?  Is it dealing with chemo side effects of vomiting, and fatigue so bad they can barely walk to the bathroom without having to lie down? Are they “strong” when they shave their head because their hair started to fall out in clumps? Or maybe they are strong when the doctor tells them their cancer has spread and the treatments they just struggled through the past 8 months didn’t do a thing.

Is strength in that patient who only weighs 80 pounds now, and sleeps 20 hours a day but still gets the poisons of chemotherapy pumped through their frail veins hoping that a miracle will take place?  Or is the one with the strength her caregiver:  Her husband who holds her hand and tells her funny stories just to see the memory of a smile in the face he loves;  who waits until she is asleep to get something to eat, or to escape to his car to cry and wonder how he will live without her?  Is the strong one the parents who watch their 50 year old “baby” suffer through constant pain while still worrying about how everyone else is doing?

Is inner strength reserved for only those who have suffered great loss?  Do people consider me “incredibly strong” because on top of living with stage 4 breast cancer, I live with the loss of my only sibling; my sister Kim, who was strangled to death by her husband of 20 years?  Does taking in my nephew and testifying at a trial while having another round of chemo make me Supergirl?  I don’t think so.  Yes I have lost much, but there are people in this world who have suffered so much more than I have.  Is the homeless man who once had a lucrative job but got downsized and lost all he had, surviving another winter on the streets “strong”?  Or is the man who brings him a hot coffee every morning the “strong” one because he knows this homeless man won’t accept more than the coffee, and he worries that one morning his friend won’t be there?

Strength, I have learned comes in many different packages and refuses to fit any set mold.  It is in the tiniest of things and in the greatest of things.  It comes from places you wouldn’t expect it to. It appears in you when all your life you have thought you could never survive “that”.  I don’t think of myself as strong.  I think I am just doing what I have to do to live the best life I can day by day.  I mean, when you think about it, what’s the alternative; digging a hole and lying in it waiting for death?  Well that’s stupid!

I hope that none of you has to call on your inner strength for anything big.  But if you do, or if you are going through something that is requiring a lot of strength at the moment. know you are not alone.  I pray you keep finding strength to deal with what you must.  I pray that all of us can reach a day when we can just be normal, boring, “weak” people!

Barb

Saturday Chores

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I have a love/hate relationship with Saturdays.  I love that it’s a weekend and everyone is home, but I also hate it because it means listening to the girls whine and fight about what chores have been given to them.  I love my middle girl, Erin, but my Lord does she know how to argue, whine, and bitch about helping out around the house.  My oldest, Kait will do whatever you ask of her.  She tends to rush through some things, like cleaning the bathroom, which leads to having several do overs until its up to Brian’s standards, but at least she does it.  The youngest, Emma will procrastinate but won’t argue about the jobs she was given. At 18, I keep waiting for Erin to mature enough to when she will stop the high pitched squealing, whine she has gotten so good at.

She is a typical middle child but also a problem child.  When she was much younger, I had her evaluated by a Psychologist because her temper, whining and stubborness was out of control.  I was prepared to hear the worse when the Dr. asked to speak to me 3 weeks into counseling.  I was surprised, however, when she told me there was nothing wrong with Erin, except that she was a problem child.  She was great for everyone such as, her grandparents, teachers, and friend’s parents.  It was just for us that she was acting out for.  The doctor explained that if I spent 23 hours of the day with Erin, she’d bitch about the 1 hour I didn’t spend with her! So we have picked and chose our battles and I keep waiting for the magical day she finally grows up, or moves out.

She is now moping and mumbling under her breath while vacuuming and I, thankfully am up in my room writing this.  I will hide in my room until she cools off so I can avoid a fight. Besides, up here she can’t see me smiling.  One day, karma will teach her a valuable lesson.  She will be blessed, hopefully with a daughter just like her and she will have to listen to the whining voice for 16 or more years.

Barb

 

I Think it’s Finally Winter!

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Compared to the extreme winter of 2015, here in eastern Pennsylvania, we have been very lucky with the very mild conditions so far. I am loving the mild temperatures and lack of snow.  I’m of the mind that if it didn’t snow for Christmas then Spring should be right around the corner.  If Mother Nature couldn’t get her act together earlier, don’t even think about dumping snow in March when my daffodils and crocuses should be popping up.

While I find my sentiments reflected among my new hospital family, I am shocked at how alone I stand with the general range group of people like to annoy the fair weather sun -soakers like myself.  I call these people Skiers.

I have 4 such people in my house and they drive me insane.  I have nothing against skiing.  I used to ski before the kids came around and although I never could relax enough to fully enjoy it, I was a decent intermediate skier.  My husband worked as a buyer for the ski industry when we met.  Once our oldest daughter came along, there was less time.  Once my husband left the retail ski industry and went corporate with a totally different type of business, there was even less time.

The past few years My husband has gotten back into the sport, while also introducing my nephew and two of my three daughters to skiing.  This year the kids have all their own equipment and last weekend was the opening of their favorite mountain.  The girls did great and are excited for a fun season.  My nephew is at college so he will be going every weekend.

And so starts my period of being the ski widow until April.  I get to do laundry, and cook, and clean because the chores the girls have on weekends now go ignored in order to hit the slopes early. I bum around the house and watch Netflix and basically wait until they return.  Of course my darling hubby will be too exhausted to go out anywhere so my social life will diminish also. Every social event on the calendar has to go on last minute because if the weather is good, they won’t be home.  I’m always invited along even if I can’t ski.  I’m told to bring a book and sit by  the propane torch heaters they have or to sit by the fire pit or at the bar.  What my DH doesn’t understand that sitting in the cold for 6 hours alone waiting for them to be finished isn’t fun.  Now, if there was a spa involved…..

So although it was cold today for it to actually snow, and flakes were flying for a good two hours; nothing stuck to the ground, and this afternoon was blue sky and sun. Winter will eventually rear its ugly head but I am hoping on a much milder version than 2015.

Stay warm-

Barb

Rolling With the Punches

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The battle against my staph infection rages on.  This morning at 8am I was wheeled into surgery once again to remove another abscess and remove every last bit of infection remaining in the pocket.  This time I have stitches, not just glue, but I have another drain to deal with.

Drains are the bane of my existence.  When I had my original mastectomy, I had a latissimus dorsi flap reconstruction.  They removed a large piece of muscle from my back and used it to support the side of the implant. I had 3 drains that time. One was on my left breast which was healthy but made smaller and lifted.  That was out in 2 days.  Then I had one for the right breast which was now just a saline spacer.  This was removed in 8 days.  The one in my back was the stinker.  I made a new record because that sucker was in for 11 weeks!  Not days, mind you, WEEKS. Talk about a nightmare.  In July of 2011, the silicone implant was inserted and again I had another drain.  This was only or 5 days or so.

I never had any infections or problems with any of them. Now I get the ruptured implant removed on 12/21/15, deal with another drain, have that removed on 12/31/15 and the bright shiny new year starts with a high fever, aches and pains, and my chest well red and hot.  So here I sit in my hospital bed, in my private room which is very nice, hooked up to another drain.  It feels like a class reunion in a weird way.  Please send up a prayer, a positive thought, healing white light,  or light and love that things go smoothly from now on.  No more infection, fevers, and when this drain is removed that there will be no infection or seromas, and I can move on.

Life throws a lot of punches at you.  It is constantly trying to beat you down. Our job is to fight back.  It’s how we learn, adapt, and become stronger.  The people who fight back the hardest are the strongest.  Those who barely try to fight, become slow, dull, and sickly. The ones who do nothing, die

Learn to roll with the punches.  Don’t be an Oak that never bends, but stands firm;  be the Willow.  It bends and sways and gracefully accepts what life throws its way.  Flexibility is the key to balance and happiness.  Embrace it.

Thanks-

Barb

Remember to Breathe

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“Whenever I feel a little blue, I remind myself to breathe.  It makes a big difference!”      – Author Unknown

I apologize for the infrequency of my posting.  I have been dealing with a staph infection where my ruptured implant was.  I have been in the hospital since 2:30 am Thursday.  IV antibiotics, Infectious Disease doctors and painful, gross things I don’t want to leave you with mental pictures of. (You really should thank me!).  So here I shall be for the next few days, at least until I heal enough to be able to switch to an oral antibiotic.

There are going to be times in everyone’s life when you will be facing something such as a physical illness, emotional or physical pain, a death in your family; sometimes in a violent way.  Whatever it is, there will be a few seconds of time that will feel like a fishbowl was placed over your head, and a vacuum is sucking all the air out of your lungs.  Your hearing becomes muffled and you are aware of a slowing down of time. Remember to do one simple thing. Breathe.  Take a nice slow, gentle inhale and let the air fill your lungs.  Hold it for a second, then exhale slowly and controlled.

Immediately you realize you can hear everything going on around you, your vision is crisp and clear.  Take another breath. Find a pace that feels comfortable, and be aware of the air traveling in and out of your lungs.  It didn’t kill you.  That thing that just happened that has been on your list of things you would never survive?  Guess what?  You just did.

Barb