Category Archives: Journey through Breast Cancer

Having tested positive the year before for BRCA2 gene mutation, I knew I was at higher risk for breast, ovarian cancer, and more. A routine mammogram picked up a change in my breast, and a biopsy identified the beast(s).

Be your own advocate

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Seven years ago today I walked into Massachusetts General Hospital with a friend from NC who flew up to be with me, and I had a double mastectomy.    Another friend picked handled the logistical part of the day and many more to come.

With a diagnosis of two different breast cancers at the age of 47, a lumpectomy in April which unfortunately they did not get clean margins, I went 12 weeks fighting insurance to get my mastectomies.   It was hell.

I carry a gene mutation, BRCA2, which all of my sisters do as well.  Most of you who know me know, my youngest and oldest sisters died of Ovarian Cancer.  My only living sister is, too, a breast cancer survivor.   This mutation put me at a very high risk for both breast and ovarian cancer, and a handful of others.   After my kid sister died at 38, and my sister paid the enormous fee to have the first genetics testing, I thought for sure I had dodged it.  My sisters had had their cancers much younger than I.  Unfortunately, when I tested positive for the mutation I was devastated.  More so then when the actual diagnosis of cancer came in.  That was expected.  Just didn’t think it would be 8 months after testing positive.

However, with that said, after insisting for a second opinion at MGH, it was apparent from my mammograms that the first cancer was missed for a couple of years.   Also I want to note, in March when I went for my routine mammogram and was called back for more images, both my sister and I knew, my fate was laid out.     They called me in, did more images, and showed me the images and were quite hesitant to do a biopsy.  “Let’s just watch it for six months”.   I insisted upon a biopsy.  That was with MUCH PROMPTING from my sister, Karla.    “Okay, we’ll do it, but I bet it will be benign”.

The next Monday morning four women went in for biopsies at the small hospital here, and one malignancy came out of it.  Guess who?

The point of my sharing this is to encourage ALL of you, to be your own, best advocate.  Not just with breast cancer, but with any health problems.  Follow your gut, know your risks, get preventative testing, don’t ignore or put off for ANY reason!   In cancers, we all know by now, early prevention saves lives.

It was on this day that I went through the emotional surgery to have my breasts removed, and reconstruction started with expanders put in under my chest muscles.

I can say I am a 7 year cancer survivor.  But I don’t take that for granted.   My life has changed immensely since that day.  The journey of cancer made me a better person, and gave me new perspective.  I know it’s a cliche “Cancer made me a better person”, but I feel that way, and I am one of the fortunate who BECAUSE I INSISTED ON A BIOPSY and BECAUSE I INSISTED ON A SECOND OPINION at Massachusetts General Hospital, am here today to tell my story.

A big thank you to all my many friends who helped me through the almost 2 years of treatment.  It was a long, painful journey with many complications.   Today, I have complications with the implants, and I’m going to have to address that soon enough.  At 47 and single, I wanted to have reconstruction.  Now almost 55 I wonder if I will just have them removed.  My choice, time with tell.   I do know that my breasts don’t make me the woman that I am, and I really do like who I am.

Today I celebrate 7 years cancer free.    Please heed my words and be your own advocate, insist on second opinions, change doctors if you have to.  Long gone should be the days when my grandparents were loyal to their doctors.   Insist your doctors be loyal to you!

Love to you all

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Five years ago today……..

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Five years ago today I walked into Massachusetts General Hospital and had bilateral mastectomy for breast cancer. Five years ago today I was officially declared cancer free. What a gift!WPH5USCABYHQPJCA9EV66RCAMK41PLCAU2O5JRCAAOJ100CAXQHUXACADLJ371CAUDLU6ECAACHMBECAS4UXKCCA26PT8FCAP4H2MICAX072YZCA7FKRB7CAH15FE7CASBG6TOCA0IX1AICA4P2USK

With a second chance at life, I am grateful for all the gifts of perspective that came with this serious illness, and personal growth from the whole journey. I wouldn’t wish this journey on anyone, but I wouldn’t trade my personal growth for the world.

Celebrate with me. Do something kind for yourself, or someone else today. Take a few moments to remember and honor someone you love who is battling, survived or lost their life to breast cancer.

Let’s find a cure!!!!!!!!!!!

Celebrate my 5 year anniversary CANCER FREE!

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Celebrate my 5 years cancer free with me!

Five years ago on July 27th I was pronounced CANCER FREE!
294483_2592188883644_35886365_n1.jpgHelp me celebrate! ! ! ! ! !Starting right now, until midnight August 1 when you make a donation to Avon Walk for Breast Cancer you can choose jewelry from my facebook page “Donna Scully Art” for equal or less value free! You MUST use the link that I am going to plaster all over my Donna Scully Art page, and in Comment section of this link write “…A friend of Donna’s” and then provide the name of the women you wish to honor with your donation. Shipping is free and you will get a tax deductible receipt for your donation! If you donate and forget to write in the comment section on the link below, private message me and I will confirm they received it.Donate for all the loved ones you have lost to this awful disease. Donate for all survivors, all who are fighting the fight. Donate for your mother, grandmother, daughter, wife, sister, niece, grand daughter, girlfriend. Donate for the mother in law you don’t like! Just please, donate! LETS FINE A CURE! I hope you join me in this celebration ! EXCITED! EXCITED! EXCITED!This is how you do it. Put your name on the comment section of each piece you wish to purchase. First comment gets it and will only be held 24 hours for payment otherwise it becomes available again. So if someone has there name on it already and it’s still posted you still may have a chance to get the original designed jewelry (by moia!). Comment right after them! Picture will be deleted once transaction is complete.On July 27th all the names of donators who has donated $75 or more will be put in a pink hat. My mom will draw a name for a prize. What it is? Who knows! Stay tuned.

My donation is to honor the following women: My sister Karla Young, for the first woman I ever knew and loved who died of breast cancer – Betty Gauthier, Linda Yeaw, Elaine Sampson and all of you who are fighting the fight. Love to you all!

October is Ovarian Cancer Awareness month. I will be doing the same thing in honor of two incredible women, my sisters, who died of this insidious disease. Darlene M. Lucier, Karen Lee Lucier.

PS….. I only use gemstones, glass and crystal beads. You will LOVE your purchase! Share this post with family and friends, share it with strangers! Let’s FIND A CURE!

All the names honored will be listed August 2nd, and if you’d like to share their picture with that posting, I would love it. I will post them all August 2nd. Please private message me name, photo and whatever else you would like to say. I will do this every year until they find a cure!

Ready? Set? Let’s find a cure! Thank you all for your support!

https://www.facebook.com/Donnascullyart

So this is anger?

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As I sat down in my usual spot in my therapists office I said “I don’t want to be here”.   She smiled…”Well, let’s talk about that!”

The night before I had been in touch with a cousin whom I haven’t seen in decades.  I wanted to let her know about our Uncle’s death and to talk about family genetics, thus, cancer history as I could let her know what we’ve been through which may and hopefully help her, her brother and children with early detection.    Not sure if I would hear from her, I was pleased when I saw she had replied to me.    Good old facebook.

Her reply resonated through my entire body and settled into my bones.  Her brother, my cousin, died in 2003 of cancer at the age of 48.  This is the same year my kid sister died at the age of 38.     It was too late to call my mom but I did.  When I told her she was really quiet.  Mom?  “Yeah I’m here, that is just horrible, just horrible”.

I walked around my house for a few minutes not being able to settle into a chair.   I felt numb, my chest was heavy and numb.
When I sat at the computer to pound out my emotions, my feelings, or to at minimum try to understand them, I couldn’t keep up with what was flashing in my head.    I was reacting physically, I felt like I had been sucker punched.   Why am I reacting this way?  Not that it wouldn’t be difficult to hear a cousin died of the same hereditary disease that has grabbed my family with its sharp talons.  What am I feeling?  I could not figure out what emotion, what feeling I was having.   A fleeting thought went through my head… “Anger?”

Stoic, and in a monotone voice I shared with my therapist what I had learned about my cousins.   I felt my foot tapping and could feel my jaw clench as I was speaking.   I love my therapist, she is great and has helped me so much in learning to first identify my feelings, and how to cope with them.    She asked the questions I was afraid she would ask, which I guess is why I didn’t want to be there.   She leaves no stone unturned, trust me.   Still feeling sucker punched only worse, I thought out and quickly planned my route to the bathroom should these feelings come UP.  Sure felt like they were going to.

Anger?  Do you feel angry?   I thought about it as I replied “maybe”.  The word that came out of my mouth and surprised me was “Powerless”.   I rarely use that word and it rings the tone of Step 1 in 12 step program.   I’m not even sure all that was said and by who, but I remember the words “unjust, unfair, cruel”.    With this I learned that I was angry.   “No wonder you didn’t couldn’t identify the feeling, Donna, it’s new for you!”  How cruel that my cousin, too, died too young.  How cruel that his sister has had to walk through life the past 10 years without her brother, her only sibling.   Another mother out living her child, having to bury him.  How insidious.

Oh trust me, I have had hissy fits and I know how to clean out a refrigerator and cupboards to help buffer the unpleasant feelings.  What I didn’t know was first, how to describe, name the emotion, but also, do so without running from it, stuffing my face so as not to feel it.   I am so not good at anger.  When my kid sister died I was hospitalized a few months later for “mood stabilization”.   I was miserable.  Broken and miserable.   I knew I was angry but I didn’t know how to deal with it.  I also didn’t know how to be “angry at God” that he let this happen to my family, cousins included.

I took a deep sigh and sat back in my seat.  “Yes, Yes I am angry.  I am very angry!”    Walking out of her office I still felt sucker punched, my jaw was still clenched, but I wasn’t as confused as I was when I arrived for my appointment, feeling like I had jumped on a hamster wheel and was stuck on it.  The more I thought about it the faster it went.  Both my therapist and I were pleased with my thoughts, decisions, to wait to talk to my cousin until I could pull it together.

We have made arrangements to talk this evening.  I am looking forward to talking to her, catching up, being in each others lives.   Perhaps I have information that may help her as we both swim in a gene pool you wouldn’t want to put spent fuel in.  Perhaps she will help me.  “Perhaps”, said my therapist, “this will help you both heal”.  Well, wouldn’t that be something!

I remember having the genetics testing done at Massachusetts General Hospital (MGH).   The doctor, quite serious, asked me if my parents had met at a medical convention, genetics.   I thought that was a stupid question given that I was in my 30’s when scientists identified the BRCA mutations.  Later, HNPCC or another name “Lynch Syndrome” which is hereditary colon rectal cancer.  I remember the look on the doctors face at MGH when I handed him the family history that my sister studiously gathered for her, the first in my family, gene testing.   It couldn’t have been more clear had his jaw been sitting on his chest.  I remember when the two idiot doctors in New Hampshire that stood over my brothers hospital bed 2 weeks from the day I was diagnosed, and told me that his diagnosis of two cancers had nothing to do with a mutation.   I cannot tell you the anger I still feel today.   I also didn’t hear them apologize when the tests came back from his second opinion at MGH and the first test they did was Lynch, and he tested positive.   Their lack of knowledge became ignorance and arrogance when they refused to listen to what knowledge we had. Breast cancer (2 different cells), ovarian cancer, uteran cancer, ureter and kidney cancer, colon, colon rectal, prostate cancer.   Every member of my immediate family including my parents have had cancer.   The list above is the cancer portfolio in MY immediate family.  ANGER!   How dare this doctor have the audacity to not even LISTEN to all that my family has been through, hence learned.  Five years later, to this day, I still could slap the shit out of their faces when I think about it.  Long gone should be the days when patients are loyal to their doctors, not themselves.  Long gone should be the days when a doctor’s ego gets in the way of a patient’s diagnosis and best treatment.    As angry as I remain I hope for him, a better doctor than he should he find himself on the other side of the patients table.

My parents have never been testing and have no plans to.   I think it would be futile and only serve to haunt them as to whom or which passed down the potential death sentences to their children.    With cancer on both sides of my family we have, and our doctors have guessed which came from where but of course there is no certainty unless testing is done.    What would be beneficial from their testing is to let family members from each side know which or what or both mutations came from, to know their risks, thus assist in prevention, early detection.

Today I’m more settled than I was yesterday.   I spent several quiet hours by myself yesterday thinking about what I had learned from my cousin and in my therapist’s office.   Tonight I will talk to my cousin and even though much of the news we have is sad, I hope we are able to find laughter for pockets of hope, for health.

KNOW YOUR RISKs!

 

 

5 years ago today …. the diagnosis

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Five years ago today I was diagnosed with breast cancer.  Actually two separate cancers.   You  may find this hard to believe but the diagnosis, while unpleasant, was no surprising.  It also wasn’t devastating.   Testing positive for BRCA2+ 8 months earlier, however, was.  In fact, it was downright awful.  

What is BRCA2???   It’s an inherited gene mutation.   In the early to mid nineties scientists made a huge leap through research when they found the gene mutation(s).   Everyone has BRCA genes. Their function is to produce tumor suppressor proteins which assist in repairing damaged DNA and the stability of such. When mutated, protein product is not made, DNA damage repair is impaired. As a result, cells are more likely to develop additional genetic changes which can and put those with the mutation at a much higher risk of cancers. Simplified, these genes fight tumors in feminine (and male) parts such as breasts and ovaries. Men are at higher risk of breast cancer as well. In short, it sucks!

However, with that said, knowing you have the mutation increases the chances of finding the cancer(s) early. Early prevention (in ALL cancers) saves lives. Close and frequent screening reduces the risks of advanced disease (cancer), saves lives. It also means you get felt up by your doctors more frequently! Okay, okay, perhaps not funny but I think so!

Never once did I think or fear that I would die from this bout with breast cancer. It wasn’t an option. I knew I had a long road ahead of me, some very unpleasant experiences, treatments, but it was not going to take my life.

I am in remission. I have been for five years. Well, my doctors consider my remission date the date of the mastectomies which was July 27th, I count from the date of diagnosis.

I was fortunate. As frightened as I was to have the mastectomies, after all, I was a single 47 year old woman who didn’t want my breasts removed, no woman does, my niece, who also tested positive for the mutation, underwent double prophylactic mastectomies, removal of breasts to lower her risks of getting breast cancer. Controversial, many, including myself at one point, judged a woman who made this difficult decision. Why would a woman remove healthy parts of their body? In my opinion, because she’s smart! She is being proactive, courageously facing her risks, taking charge and empowering herself from these hereditary cancers. She was one brave woman and paved the way for me to even consider the option. An amazing woman, who I believe was 29 when she had this done.

Breast cancer is the 2nd leading cause of death in women, second only to heart disease. According to the CDC (Center for Disease Control) 1 in 8 women will get breast cancer at some point in their lives. For those in remission who do not have the mutation(s), the longer they go without recurrence, the better their chances of no recurrence. For a person with the gene mutation, the longer you go without recurrence, the greater the risk.

I opted for the double mastectomies, reconstruction (implants), and declined chemotherapy. My oncologist was comfortable with my decision given the radical surgeries I underwent. My cancer(s) were estrogen receptive. Therefore, I have been on one nasty ass drug named “Tamoxifen” and will remain on this for 5 years, which for me will be this coming December. Following this I will go on another hormone suppressing drug for five years. I was fortunate, again. This regime was not available to my sister when she was diagnosed at the age of 40 (she’s old…57) 🙂 This is why research and development is so important with all diseases…progress. My sister’s breast cancer diagnosis, and my younger sister’s ovarian and uterine cancer diagnosis and unfortunate passing at the age of 38 probably saved my, my sisters and my nieces life. Knowledge is power!

If you have the mutation you are at 50% risk of passing this along to your children, and they their children. We all hope and pray that the mutation stops with my niece and that her children are free of this.

I wouldn’t wish the journey of breast cancer and the grueling reconstruction on anyone, but I wouldn’t trade my personal growth for the world. As a person who has struggled most of my life with clinical depression(s), fighting my cancer(s), fighting back, made me realize how much I do want to live.

So now my breasts have serial numbers and I can run without a bra! The pisser is, these suckers will stand up and not move an ounce but the rest of me does!

As most of us cancer survivors have said on numerous occasions, and most everybody has seen on hats, tshirts, sweatshirts and more…… FUCK CANCER! So fuck you cancer…. I win!

I also want to add that I believe the words “cancer survivor” extends to the loved ones who have walked alongside their loved one in the difficult journey through cancer, and the too too many who have succumbed to it.

KNOW YOURS RISKS!!!!

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This morning when I walked out to my car I was surprised to see my rubbish still there.  We are fortunate to have pickup.  Well, I looked up at my neighbors, no rubbish, another neighbor…no rubbish…. What the heck?  I go about my day, full of errands, first order of business was Fed Ex, second was Motor Vehicle Department which is always a joy.  Well, guess what????  We didn’t have to wait in line and what I thought was going to be about $80 turned out to be $20!!!  Wohooooo.  Our local satellite office has such nice women working there.  Much different from the headquarters…most are stoic, never smile and have the personality of a slab of meat….

Never knowing what I am going to discuss in therapy, today’s was a shocker to me.  I suppose because I just postponed an oncology appointment to January.   My therapist was quiet, listened, asking only a few questions, one being “When was the last time you spoke about this so intimately?   My answer….  At least four years, then I thought about it…. never.  I have never shared the traumatic details, the emotional weight of going thru breast cancer, two different types, in fact.  Tears flowed down my cheeks a couple of times, as I recalled more moments with my kid sisters treatment.  The topic then turned to recollections of my own journey.   In three words it would be “It fucking sucks”.  Mine was spread out almost 2 years because of complications, infections, yada, yada.  The emotional part I don’t think I have ever dealt with.  I did what I needed to do, got through it all with a sense of humor and with the help of friends who brought me to appointments, stayed with me through surgeries, helped out as they could.   My mother moved in with me for a couple of months, which actually wasn’t as bad as I thought it would be.  She was a tremendous help.   Given that my brother was diagnosed with two different types of cancer 2 weeks to the day that I was, and having drastic exploratory and corrective surgery, she was running the roads from my house to his. 

Whenever I would feel down, discouraged, someone appeared in front of me that changed my perspective.  I remember one woman, had an arm removed, had a bone in her back removed, and she was determined to stay alive, keep fighting.   What the hell do I have to complain about?   But I did.   Having fibromyalgia complicated things.  It sucked, but I tried to keep a positive attitude and also educate other women through my journey.   I realized today something significant about my being a cancer survivor.  I have never gotten angry about it.   I bounced through the other four stages of grief, but I never got angry.   Perhaps that is why I am visiting this topic now.  I am starting to feel angry, four years after diagnosis, two years after treatment and reconstruction.   Anger is something I don’t know how to do.   I am pretty easy going, let a lot go by, but when I get angry it is hard for me to get out of it.   When my sister died, I was so angry that I couldn’t even stand myself.    A few months later my sister called me and said something like “Donna, I love you, and I believe you need help with this, with coping.  Will you please consider getting help?”    I did.   I did.

Ironically the psychiatrist who was assigned to me inpatient was the same psychiatrist I had seen for years.   After an evaluation, he said to me… “Donna, for as long as you have been my patient you have struggled with suicidal tendencies, ideation, thoughts…  Well, you have made progress.  You are no longer suicidal you are homicidal!  He was joking, of course.  The point he was making, however, was growth.  I was no longer harming myself or punishing myself for God knows what, I was angry, I was angry with Cancer, I was angry with God, I was angry with anyone else who crossed my path.    I got stuck in that anger for months.   What this visit was labeled was “Mood stabilization, depression”.   Yeah, I needed some mood stabilization, for sure!

Now I am angry for my own journey.   What the hell did I ever do to deserve this?   Why did this happen to me, to my family?  I had convinced myself, well I still believe, that part of the reason was to educate women on early prevention, detection.  With the large number of women I encounter I could possibly help others.   Still, I’d rather have just educated them on painting, but this journey quickly became a side cart to wherever I was, wherever I went.

I do not wish, nor will I stay here.  I cannot possibly be angry, peaceful and serene simultaneously.  I have come so far, I have learned so much, I have gone through enough that I just want peace.  I want serenity, and I want peace.   No matter how much weight I gain, or lack of exercise I get… my New Years Resolution for the rest of my life will be “Peace and Serenity”.    It has been a long journey to get here.  I still have shaky times when it flies out the window, but I have reminders all over my house.  The physical pain I feel on a daily basis reminds me, too, that all I can do is my best, that I have walked through the jungle jims of hell, and I am still here.  All I want is peace, peace and serenity. I wouldn’t wish this journey on anyone, but I wouldn’t trade my personal growth for anything in the world!

My sister gave both my brother and I a medallion.  It means much to both of us. This was the only thing my brother wanted to take from his car, the only thing he was worried about. The other day I thought about mine and wondered where it was. I hadn’t seen it in a couple of months. Hmm, I’ll have to look for it when I get home. Well, a few minutes later I pick my mother up at her apartment and she says “Hold out your hand, I have something for you. I found it in the car, cleaned it up for you”…it was my medallion. I smiled, looked up and said “Thank you!” I am always given what I need. I am always given what I need. The timeliness of this is not uncommon in my life. It’s rather nice, spiritually validating to me.

Saint Peregrine is on the front, and on the back, engraved artfully, beautifully reads this:

Cancer is limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot eat away peace
It cannot destroy confidence
It cannot shut out memories
It cannot silence courage
It cannot invade the soul
It cannot reduce eternal life
It cannot quench the spirit
It cannot lessen the power of the Resurrection.
I will leave you with one of many comical episodes that I went through when I was doing all I could to fight this disease. When I came home from the hospital after my second surgery (bilateral mastectomies, reconstruction), I was on some very heavy pain meds. Two friends had stopped over to visit, mom made them lunch and they were sitting in the kitchen. My mom asked me to come out and sit for a minute, try to eat something and visit with Robin and Bob, so I did. A couple minutes into the conversation my friend Robin asked “Now what exactly did they do to you?” I explained that they cut out the nipple and go from there. She asked “Well, what did they do with your nipples?” I looked at her and responded very quickly “They sewed them on my ass for traction!” And then my mother suggested it was time for a nap!

Oh and PS….. As I drove back into town approaching my humble abode I noticed my neighbors rubbish was out…. Um…. I guess I put it out a day early! 🙂

The anger stage of grief

On healing…

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It has been a very lazy morning here, but a much needed one.  Though the sun is shining and the dogs have yet to get out to play (they’ve done their duties, of course a few times over), I am reminded of how nice it is to wake up, with others sleeping in the house, and feeling that sense of family, of closeness.

I want to share with you that I met a woman on facebook who is a Pain Relief Educator and Therapist.  She specializes in trigger point therapy, myofascial pain syndrome which is something I have had since 1995.  She lives 7 miles from me in Brattleboro!   I was fortunate to have visited with her for a couple of hours and learned more in those 2 hours about what I can do to help myself than years of doctors appointments and unwanted or refused drugs.  I have not taken narcotics for pain other than post surgical.

While familiar with and aware of trigger points (areas of pain that refer pain into other areas), I was not aware of how to address them.  I have had only one back massage in almost 20 years because it hurt to allow anyone to even touch my back in areas.    Since my surgeries for breast cancer and surgeries I have had neck and shoulder issues and constant pressure and pain on my sternum and breast bone.  I unsuccessfully tried to massage and remove this, though after manipulating the area at times I did get relief.  I want to share what I remember that was done, and how I felt when I left.  I was there a total of five minutes when she asked me to take off a shoe, and diagnosed me with a foot problem that I cannot remember the name of it, but that we will be treating by slowly raising up the areas under my big toes by placing soft cushioned pads in my shoes.    Her environment was one filled with healing.  It was very peaceful, serene.  I felt very safe and relaxed.

My body, on a massage table, was straightened out to the manner that it is designed to be…. straight!   There was no massaging involved.   I will do my best to explain this, as this is brand new to me, but it not only helped reduce my pain level 50% at that time, but it was fascinating.   She would take her hand and softly touched parts of my body, looking for the trigger points.  If you put your hand over an area, the trigger point areas will exude heat.  Then with one finger, and a slight amount of pressure (I am still not sure how much) she held it in that position for a period of time.   On at least 3 occasions I asked her if she was using her first…. she showed me, it was only one finger.   The pain that came out of that area was immense and felt like she was pressing her fist with all her might.  After a bit she would move her finger upwards, which by this time, the pain was decreasing.   Standing behind me, she had her arm wrapped around my neck, which felt like it was in a slight upward position and her pulling my head back to her.  I will tell you, this brought initial relief in my ailing neck and shoulders BUT it affected every area that was knotted or “lumped”.   The large lump on my left side, my sternum/breast bone area, my shoulders felt this pull and while it hurt, I could literally feel these areas start to loosen up.  My visualization was that they were disinigrating    It seemed that she did this for a long time, perhaps 10 minutes or more?   I started to feel blood flow in my head, which this is probably going to sound strange, but it felt so good.   Obviously I have had blood flow, but not like this.   She taught me a few stretches with my heels (pushing down on them and not my toes), and my fingers, pushing out on them.  She also taught me a position to roll into to get up (or out of bed) without pain.  When I stood up I felt a little light headed, but the areas in which were causing me agony when I arrived there had immense relief.

Filled with gratitude, I sat talking to her and visiting with her and her ailing, yet very sweet and healing cat Ani.   We discussed the importance of stretching, medications (including pain meds and muscle relaxants).  She told me that I was a miracle, to have gone all these years in this condition without going insane or taking my life.  This made me cry, as I had met someone who not only could help me, but also who understood, by her own experiences and body this difficult path I have walked.    She validated what I have felt for a very long time.   She validated my struggles, my pain, and is offering me relief and hopefully freedom from these debilitating syndrome(s).

Blessed with a strong demeanor (and stubborness), I have defied the pain for years and kept trudging on even at times when I felt I no longer could.   While with others, I did my best to put a smile on my face and allow my optimism to shine through.  I am an optimist, despite all that tries to strip it from me.   Those closest to me, those who are in my daily life, they have known and seen the destruction that this has caused in my life.   One painting convention would lift my spirits and instill exciting inspiration, only to fall flat in bed for a week or two following in agonizing pain.    For years I have lived a reduced quality life due to health.  I have struggled almost daily with this monkey literally on my back, legs, and arms.     It is faith that God has a purpose for me, and while I may not like this journey, or understand it, it always goes back to him and what I believe to be true, he has a plan for me, a plan so much better than my own heart or eyes could ever understand.

Having fallen on my face in December, and January, my body no longer offering respite or ability to move forward, I am forced to make changes that I have pushed off for years.   With my family and friends help, I am making these changes, and with God guiding me, I am exciting to think that I am embarking now, on a path of wellness, self kindness, and healing for my tired body and soul.   I asked and prayed for guidance, this therapist appeared on the upper right hand side of my facebook and she lives 7 miles from me!  7 miles from me!    Walking into her home, to the warmth, the love, the healing that I knew had and will continue to take place there,  I kept thanking God.    As I said goodbye, and heard her final words “Congratulations, there is hope for you!”  I slowly drove away with this inherant feeling that this is right where I am supposed to be.     Everything that is being put in my path right now including new connections and friends, revisiting and embracing old friendships, even others strife, has purpose and meaning.  I can choose to involve myself and allow myself to fall victim to anothers unhealthiness, mental illnesses or even evil, or I can choose to walk away and into the door of this woman who I truly believe, with the guidance and love of God, will bring me to a point of healing.  He will work through her body, through her hands, and I shall achieve a life that I deserve.

I believe that fibromyalgia and myofascial pain syndrome(s) are present in my body because of all the years of trauma, of living in chaos, thus putting my body in fight or flight mode.    I have believed this for a few years now and have been working with therapists, taking meditation and classes that would help me learn how to relax.  My body is only relaxed when I sleep, and I have had so little of that in the past few months and years… well I needn’t say more.   Upon meeting with my physical therapist for my hand, he (this cute young man who is fun to work with) has pointed out repeatedly that when I move my fingers I include the muscles in my forearm, my upperarm and my shoulder.     This is how tense I am.   Partly due to the pain I am in, I also know very well, that this is what my body was trained to do.  Living with the chaos of alcoholism since my early twenties, allowing others problems to affect what should have been my center, my peace, my serenity.   Placing myself in ridiculously situations that were unhealthy, and trying to help people who did not want or believe they needed the help.   I now help them by offering prayers for them only.  I set my boundaries, I respect myself, and will not be the target of others inability to look within or face the extremely difficult path of self discovery, the good, the bad, and the ugly.   I remember my ex husband agreeing to go to marital counseling.  ONE visit is all that came about.   After dumping all the things I have done wrong in the center of the floor in that tiny room, the therapist, Mary said “And what is your responsibility in this?  What are you doing here that is contributing negatively to this marriage”.  Hindsight is always 20/20, I realize now that he fully expected her to agree with him, he had NO ability to own let alone LOOK at his part, his shortcomings or the like.   Prior to that question he blurted out “resentments” that dated back a decade.  Things I didn’t have the slightest idea he held inside, like cancer.    He never went back and the marriage came to an end, but only after he used my vulnerability and desire to save the marriage as a playing ground to point his finger at me and my “sick mind” because I had questioned him and his loyalty.  This was probably the cruelist thing anyone has ever done to me, other than some things of late.   To impress upon me in my fragile state, that I was to blame, to use my good efforts and attempts to save the marriage, to fill my head with self doubt, about how ill I was… only to be revealed that this was (I can only hope unwittingly) his way of covering up and justifying the affair he was having, the negligence that went on for a few years, and his inability to look within himself and grow.  I have long since forgiven him and myself for all that went on 20 years ago.  I pray for him and his new wife.  I wish him well.

Yes, I know about self discovery.  I know about physical and emotional pain, and in spite of all of that, I also know about love, true love, healthy love.   I know that we have the ability to heal if we put ourselves in the hands of God, and allow him to carry us and present us with all that we need to get through difficult situations or times.  I know what it feels like to blame others, I also know what it feels like to be blamed for others problems.  I have cleaned out the closets of my past.  I have placed things back into these closets compartmentalized.  Sometimes they will need to come back out, sometimes the closet door will become so full that I need to transfer things to a newer bigger closet.   I also know what it is like to walk away, to take action and responsibility for my life and say “No more”.  It doesn’t come easy, nor without  pain or personal growth, but it is my journey to self, to healing, to being the best person I can be.  I like and I know who I am today, and I am pleased with what I see in the mirror, deep within and external.   Others strife will first be dealt with an offering hand.  Once bitten twice shy, any attemps to involve me later are unwelcomed.  I no longer feel the need to defend myself from wrongful accusations or others fingers, they can believe what they want to believe… and further attempts to blame will be met with a shield as strong and as powerful as the shield that was built at the local power plant to block the elementary school and keep them from harm.     This is about taking care of myself, choosing the path to wellness and healing, and walking not only the path that God has laid out for me, but also within his love and guidance.

I am healing…

 

Reflections..starting a new chapter in the story of my life!

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Driving to Boston early Thursday morning reflective thoughts ran rampant. .  There was a strong possibility that “the end” of my breast reconstruction was going to happen, yet being a bit superstitious, not wanting to jinx the possibility and also following suit with a new practice that is working well for me…protecting myself from disappointment in case it did not happen.   I am finally learning to keep my emotions out of things, fly with a positive wind, as I believe we have the ability to manifest reality from thoughts, and if something good happens, hey GREAT!  I used to despise driving to Boston, petrified of the traffic, getting lost, or in an another accident.  That is no longer true!  Long gone is the fear, which passed quickly with the weekly trips for 4-5 months in a row, and the emergency trips.  Growth!  Memories of this journey kept coming up for me to discard or reflect on, the many friends who supported me through this difficult trek, the recognition that things do pass, and I AM strong, I AM capable of taking care of myself and I am worthy of life!

Arriving at Massachusetts General Hospital I smiled at the “new construction” that started at the time I started my journey.  It looks almost complete.   I have always paid particular attention to this, comparing our progress, the construction of a new building and the reconstruction of Donna.   It was really neat watching its progress.

My appointments went very well and I was very happy to hear my plastic surgeon say… Today is graduation day!  Two years to the month is a long time, and on a very intimate subject to just say “Thanks and goodbye!” to a man who put me back together.  Though I did it just fine!  It just felt strange (though wonderful) to hug, and know I will not see him again unless I need to.  I had to fight, and hard with insurance to be permitted to have my treatments out of state.  It was worth all of it!  My plastic surgeon is a very talented, caring man who finds his success when his patients are back to doing what they were before the need for plastic surgery.   He was so happy to see me doing well, excited about my second chance at life, and very pleased with the results of his work.    Goodbye!  Thanks!   I find myself laughing about it because this was a 2 year relationship.  Of course I wasn’t intimate with him but the subject matter was very intimate.  I have learned so much from this journey.  I could not possibly share all the personal growth, progress I’ve experienced.  I will say I would never wish this journey on anyone, though I wouldn’t trade my growth and personal knowledge for ANYTHING!   I am a much better human being, person for having gone through this.   I live life fuller, opt for peace, serenity and laughter over worry or strife.  I am less tolerant of things I deem “unnecessary drama”, I have NO time for spiteful people who like to create problems, and even less for those who like to play the role of victim with luxury problems.  Judgemental?  Yes, I supposed it is, but I’ve wasted enough time caring or worrying, or worse “trying to understand” the negatives.  I now choose to bask in the positives!

Today it is about me, who I am, my goals, and assuring that my life is good.  Of course I still care about others and do for others, but I have finally learned to take care of myself, first.  There will be times in life that I have to put others first, but I hope to never lose myself or precious time to issues that actually aren’t even mine!   Also, I care much less what others think of me.   I am who I am, take me for who I am, or don’t!  I’m okay with it if you don’t!  Why waste each others time?  I surround myself with my art, fun positive people who care about others, and I laugh all the more, which many cannot possibly fathom as I’ve always loved to laugh.

I walked out of Mass General Hospital with a very large smile on my face and a bounce in my step that I am grateful for.    I indeed graduated from breast reconstruction, only have to frequent Boston once every six months.  This “graduation” of sorts is so much more, however than breast reconstruction.  It is a realization, acceptance that no matter what I’m faced with, I will be given what I need to not only get through it, but grow from it.    It is an understanding of how precious life is, and how very little control I have over much… so why spend time trying to control?   It is a peacefulness, a wholeness, a self respect for myself that has brought me immense happiness and satisfaction.  It is a difficult chapter in my book of life that I can now move on from.  I never want to forget it, nor will I, but man it’s so good to get that diploma!   My life is good!

Ouch, people do this why?

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I am home from Boston, my tattoo’s are done.  I am sore, and although I supposedly have no feeling or nerves in that area, it hurt like hell!  That was even after an hour of lidocaine for numbing.    I couldn’t or wouldn’t look or watch, the whole process reminded me of wood burning.  In about an hours time I was leaving my plastic surgeons office with my bag of goodies (bandages, tape, instructions), feeling a bit sick to my stomach.   All I wanted was to get home.

As I was waiting outside the hospital a young couple was leaving with their newborn baby.  Excited grandparents were there, taking pictures, and security came and told them they were not allowed to take pictures.  I stood there thinking, okay, why would they not be allowed to take pictures of their new grandchild coming home?   Echoing my thoughts, the young (my age lol) grandfather asked the gentleman from security why photos were not allowed.  He said that it is for patients privacy.    What if you happened to catch the face of another patient in your picture, posted it on facebook, and then that patients privacy rights would be violated… hippa hippa hippa.   I thought back to when I was a kid and they used to list people who were hospitalized in the local newspaper.  Now, of course, that would probably be an invitation for theft or to be robbed.  Sad.

Surprisingly to me I felt emotional on the way home.  Bandages on my breasts again, the need to pull over and put another one on to avoid staining my shirt, I found myself crying.   Flashbacks of early on in this journey when I was teaching in CT, and had a seroma which leaked thru the bandage, my bra and onto my shirt.  But that is one of the beautiful gifts of working with women, particularly decorative painters.  They refused to let me feel embarassed, sharing their stories of embarassing moments, and offering strong support at a time that I really needed it. 

This is the end.  My body has been thru so much and not nearly as much as others have been thru.   The bandages brought it all back.  It took work for me to turn it around…This is the end.   No more surgeries, fills, pain.   This is the last and final stage.  In 2 or 3 weeks I will be returning for my follow up appointment and will also be seeing my oncologist at that time, and then I will only see my plastic surgeon if I need touch ups.  Though in thinking about it, he probably wants to see me in a year, like my other doctors, who knows, but plastic surgery isn’t oncology.   The next time I see him the bandages will come off and I will walk out of his office (hopefully with no complications) for the last time.   It is inconceivable to me right now, or I am afraid to look to that until it really happens!

 I cannot fathom why anyone would want to do this to their body.   Why they would want to go through the pain for a decoration on their skin, but… to each his own.   You can bet your sweet bippy I’ll be getting no more tattoos!  Let me repeat that.   I’ll be getting NO MORE tattoos!

And now, I shall rest……….whole, as they say.  But I never really felt like I wasn’t whole, as this journey, as difficult and trying as it has been, has brought me to a sense of self that I wouldn’t trade for the world.

T day

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I swear if my head weren’t attached as it is, it would be spinning all the way around like an owls.   What  a week!  But tomorrow (Yay, it’s Friday already!) I will drive to Boston and get the last part of my breast reconstruction.  I will be getting the tattooing of the areolas.   It’s taken me months to get the courage to do this after going through that frightening experience with infection in November.  Now I’m optimistic, in the right frame of mind to go through with this and end this long drawn out journey through breast cancer.   I will need to go back for follow up in 2-3 weeks, and then I am done!  A journey that started in March, 2009, ending in July 2011.   See me dance on my tiptoes?  I’m thinking tats of hibiscus, or sunflowers! NOT!  It is my sincere hope that I am one of the fortunate ones, gifted with good health, at least for a while.  I will not take it for granted!

As for tonight, I’m going to take a long leisurely bath, as I’m sure this will not be allowed for a few weeks, nor will I chance it.   This has been a week where I have looked forward, daily, to the close of each day when I could crawl into bed, relax, play literati with my girlfriend (a nightly ritual and has been for several years now), and then fall fast to a sound sleep of at least five hours.  It’s been a long time since I have had 5 hours of uninterrupted sleep.    It’s been a stressful week, so much that I have been taking naps again, and even that hasn’t interfered with my quality sleep at night.

As I drive into Mass General Hospital tomorrow, make the hike into my plastic surgeon’s office, I will be doing so knowing this is the last stage of what has been a very long road and yet what I sometimes feels like just yesterday.   Dressed in a hospital gown, oozing and bleeding from a seroma and hematoma (next stop was my surgical oncologist office), waiting to meet Dr Liao, my plastic surgeon to discuss breast reconstruction options  which would begin on the table right after my upcoming mastectomies.  The lumpectomy had been done immediately as my oncologist did not want to wait the two months booking time with the plastic surgeons office- two cancers, two grades.    So grateful to be at the end, so grateful to be walking into that clinic tomorrow, seeing my favorite nurses, and knowing… one more appointment…. one more appointment…. (God willing).  So grateful to be able to say today… I am cancer free …