It’s November 22, and in addition to my disbelief that Thanksgiving is already this week, I can’t believe how far I’ve come along my journey fighting cancer.  Everything started last spring with my diagnosis.  Within a matter of an hour, mammogram and ultrasound completed, I found out before even undergoing my biopsy that I had breast cancer.   I didn’t even yet know what types of treatment I would be undergoing and I was already reeling.  A few short weeks later after hearing my confirmed diagnosis my world was spinning out of control…port surgery, chemotherapy and the possible side effects, Nulasta shots, lumpectomy or mastectomy, radiation, Tamoxifen, Herceptin…the treatment plan laid out before me seemed daunting, scary and most of all, unending!  And when you include the different unexpected obstacles thrown in the way…C Diff infection, blood transfusions, hospital stays, unacceptable blood counts, periodic heart testing, side effects that work together with fibromyalgia to give it more power than ever before…let’s just say that there are MANY days when one asks oneself “How will I ever get through this coming year???”  You fight to live day by day, or in my case hour by hour or medicine dose to medicine dose.  But even amidst all the chaos spinning around you, you have intermittent worries about cancer’s return, ALL BEFORE YOU HAVE EVEN BEATEN IT!!!

So we’re here in November and I have successfully completed chemotherapy and shown all its evil sides who’s boss!  I’ve healed from my double mastectomy and the removal of several lymph nodes from under my left arm, and I’m now trying to incorporate physical therapy into my day to fight the always present possibility of lymphedema.  It took THREE different appointments to get through my radiation planning, but that is finally out of the way.  And I’ve already undergone two of my twenty-eight sessions. 

Throughout my initial consult, all three planning session attempts, and now each visit for treatment, I continuously hear from the doctors, the nurse practitioners and the rest of the staff “You will not get sick.”  I’m lucky in that radiation for breast cancer doesn’t bring with it stomach issues since that’s not the area receiving treatment.  The biggest side effect I can expect to encounter is fatigue.  Secondly, redness and soreness to the treated spots on my skin can come in a few weeks.  While all these positive comments are wonderful and will hopefully do as intended, keep me feeling positive and unafraid, they don’t address the rest of my physical side that I unfortunately bring to the table, my fibromyalgia.

My fibro is rather severe much of the time.  Something as simple as laying on an exam table can feel like the table is poking up from beneath me and pushing on several bruises that really aren’t there.  That is how touch often feels for me, like bruises.  Nobody warned me ahead of time what the planning session entailed, and now that I’ve completed it, I’m grateful for that.  We started with a CT scan, which for many is a piece of cake.  But for me and I’m sure many others, it’s not that easy.  The table is hard, cold metal.  While laying on it, there are various items placed beneath my legs, my tailbone, and my head meant to keep me in the proper position.  However they have the same effect as a regular exam table.  They push on those “invisible bruises”.  The hardest part of the position isn’t laying there; harder than the metal surface is the fact that I need to have both my arms stretched over my head and pushed off to the side.  Muscles that have been affected by surgery are very tight, and following my mastectomy and lymph node removal, my left arm doesn’t reach up as easily as it used to.  While I can put my arm into that position, the movement is very slow.  And following the test and subsequent treatments, my arm will stiffen while in that position so instead of the difficulty being keeping it there, the problem then becomes bringing my arm back down to my side when everything is done. 

The next part of the planning session seemed to take forever.  In order to be sure that the radiation is applied correctly and precisely each time, marks are placed on the patient’s body.  Lucky for me, and I’m saying this sarcastically, they marks are applied with tattoos.  About ten needle sticks in my chest area and sides nearly put me over the edge more than once.  I’m not a sissy about needles.  I’ve been treated for an underactive thyroid since my early twenties which requires routine bloodwork for a lifetime.  I’ve had so many needle sticks at this point that I have a permanent divet, as I call it, that I love to “brag” about to nurses as they look for good veins for bloodwork.  But the parts of the body that received the tattoos aren’t covered by much fatty tissue, and when you combine that with the fact that my fibro causes my body to view many procedures as a trauma that can then lead to greater pain that the average patient, the word “torture” came to mind numerous times throughout those few minutes!  (I’m not being a drama queen or exaggerating when I say this.  I think I can confidently say that I generally go through many of these treatments with a positive attitude.  I worry tremendously before the appointment comes!  But in the actual moment with the nurse or physician, I tend to hold strong and do what I need to on my end to get through it without much fuss or complaint.  Even if I unintentionally grunt from pain, I tell the medical staff not to worry about apologies for hurting me…let’s just do what we need to do and get this all over with and behind us!)

The final part of the planning session involved making a wax mold of my chest.  This was to be used during half of my treatments.  Mastectomy patients use these to reach different levels of tissue.  The mold is used to “trick” the radiation as if there is a greater amount of tissue like patients who haven’t had a breast removed.  Preparing this mold would be like  massage for others.  But pressing the wax against me for ten minutes or so is again like pushing on those bruises.  The only pleasant part was the wax was warm like a heating pad!

After this planning appointment, there was only a set of x-rays to be done before my treatments were to start.  More laying on a hard metal table.  More holding my arms up over my head.  But all of this is finished and now I just need to be on the table long enough to check my positioning and get my treatment. 

Every day during the week for twenty-eight treatments, this will be my routine through to the end of December.  I’m doing my best to approach it with a positive attitude, but it brings so much discomfort that it’s tough.  I’ve already spoken with the nurse practitioner about ways I can better prepare myself to avoid some of the pain.  One of the most important things I can do is make myself just as important part of the treatment team as every doctor, nurse and therapist is…I need to remember to speak up.  The staff is large enough that there are still people I haven’t met, so I need to speak up and make sure that each and every person who plays a role in my treatment knows that I will need assistance others may not require.  I can’t just have them grabbing an arm and deciding to place it where they need it without asking me how I feel and what can they do to make sure they don’t cause me pain.  I need to ask for help getting up from the table, and if I’m not okay once the treatment is over, I need to make sure I don’t rush through getting up and leaving the room.  I need to follow through with their recommendations to keep this process as smooth as possible.  Everyone I have met so far seems like very caring individuals, and for that I’m grateful because that always helps a patient speak up comfortably.  So the responsibility lies with me to make sure I get through this with as little pain as is possible so I can come home and resume my life with my family.

And when I reach that last week in December, I can again look back at another component of my treatment and happily congratulate myself for another job well done!!!

Christmas has always been a time of great joy for me!!  Despite the extreme dislike of winter I developed once I became an adult, Christmas has always been my favorite holiday.  I have tons of wonderful memories from childhood holiday celebrations…every childhood Christmas dinner spent with one of my closest family members, my Uncle Joe, who was also my godfather; Christmas brunch prepared by Mommy that morning to be shared with visiting grandparents; waiting at the top of the stairs for the traditional family photo before we all ran downstairs toward the tree; frustrating my father as I rushed to put new toys together while he urged me to wait for his help with the directions and assembly.  Memories don’t stop at just Christmas morning.  Our family has always had many traditions involving preparations for the holiday…heading out as a family to choose the perfect tree; stringing popcorn and carefully placing ornaments on the tree while Daddy teased Mommy with threats of throwing clumps of tinsel before she could delicately place it piece by piece as was her custom;  family parties with delicious food and Pollyanna gifts; visits to the annual Christmas Bazaar at our parochial school where we met Santa, played games for prizes, and bought “interesting” gifts for our parents.  There hasn’t been a Christmas passed that doesn’t include many different joyful moments that came together to make me the mother who wants the same wonderful holidays for her little family!

While change is inevitable and many of our traditions have fallen by the wayside, my family has done its best to hold onto as many traditions as we’ve been able to blend into our lives as working adults, parents, and spouses with in-laws to visit.  It’s been incredibly hard to see some of our traditions disappear, especially for my sister and me since we seem to be very sentimental.  But we’ve held onto whatever traditions we’ve been able to and created some new ones, both together as a family to include all the siblings, their families and our parents, and as our own individual families with our spouses and children.  We’ve lost annual Christmas brunch, but instead we have Christmas morning at our own houses where we celebrate St. Nick’s arrival the night before.  We’re all too busy to get together to buy the family tree for Mom’s and Dad’s house, but we still do our best to gather to trim the tree and share memories from years past.  We are all dedicated to being together every Christmas night for dinner, and I’m happy that my daughters will grow up seeing their grandparents, aunts, uncles and cousins every Christmas just as I did.

While others may find Christmas a combination of joyful events and stressful family conflicts, as many families in America experience, other fibro sufferers and I have other issues to contend with that many may not be aware of.  Winter weather brings with it increased symptoms for many of us.  A mix of cold temperatures, icy conditions and snow showers can cause many of us to feel greater pain and stiffness.  While others are wishing for a white Christmas, fibro sufferers know that a wintry mix may put a damper on holiday festivities as we lose some ability to participate in family events and even emotionally feel less interested as well as less enjoyment due to the pain we’re experiencing.  Extra responsibilities of decorating, shopping, cooking and baking, and added household chores to prepare for guests can cause flares in many who feel added pain with increased activity as I do.  Those of us who have good days and bad may push ourselves into a flare by trying to fill good days with too much work for fear of falling behind if a flare holds us back.  This can be incredibly easy to do with so much extra work that needs to be done in addition to the normal workload of careers, parenting and household chores.  The stress of having too much to do to prepare for holiday events can also exacerbate symptoms, especially when people become sleep-deprived and don’t allow themselves ample opportunities for rest or taking proper care of themselves.

I myself am incredibly stressed by the coming holidays as well as winter as a whole.  I’ve experienced some new problems I’ve never dealt with before, and the early snow we experienced in our area around Halloween has given me an early taste of how my body may react with each snowfall this winter.  Nights have proven more scary because of the mornings they lead to…I’ve had multiple mornings recently when I wake and either can’t stand up right away or find once I stand that I can’t take any steps.  Once I had to rely on my mother who was thankfully staying here to save me from being stranded on the couch, and then I needed her to walk me down the hall to the bathroom, like some ninety-year-old woman who was fragile, feeble and uncertain on her feet. Some of the problem may be from the fluid retention I’m experiencing due to my Herceptin treatments, but the annoying part about that is the water pills I’ve been told to take aren’t doing a thing to help!  It’s truly frightening, especially knowing that once I heal from my hernia repair and no longer require help from my mother during the workweek, I will be on my own again with my children.  My brain goes in a hundred different directions each time this difficulty with walking occurs, and the thoughts are tough to shut off throughout the entire day every time.  Is this something I will experience more throughout the winter?  Are the problems I’m having with walking only from the cold temperatures, or is my fibromyalgia worsening to a new level as it’s done a few times already?  If these problems are only new ones I will experience during the winter months, will they become so severe that I will lose even more independence and ability to be a mother to my children?  Are these moments warnings of a possible date with a wheelchair like some other fibro sufferers are condemned to use?

People without fibro don’t understand.  I hear comments like “You’re over-reacting.”  “It’s just a phase.”  “You’re letting your imagination go overboard.”  “Don’t worry about something until you know you have something to worry about.”  But it’s not that easy.  I went from a perfect life to a life of daily pain…chronic pain…pain that no physician has been able to successfully control or even minimize.  I’ve experienced worsening from doing too much, from bad weather, from changes in seasons, from hot, from cold, from walking, from sitting, from standing, from laying down, from lifting, from bending, from playing with my children.  I’ve experienced worsening for no known reason.  Every Spring when other fibro sufferers are looking forward to a probable reprieve, I know that my history hasn’t shown that to be true for me.  Every “trauma” my body has dealt with has been a source of pain.  Every flare I endure causes me to feel past flu shots in my left arm and pain from past c-sections.  I’ve caught no breaks in the world of fibromyalgia with the exception that I was able to survive my second pregnancy.  History like that brings with it fear, doubt, worry, and probably most of all pessimism.  It doesn’t take many repeated events to feel like a pattern and cause me to worry “Is this going to be the new fibro me?”  I think this way because it’s the way it’s been…symptoms stay the same for a few months at a time, then new symptoms emerged or a worsening occurred, and I reached a “new fibro me”.   It’s been that way for almost five years now.  And no doctor has given me any reason to believe that it’s going to be any different during the next five.

And as this is all going on, I’m still fighting cancer.  Physical therapy. Radiation treatments. Appointments with my plastic surgeon to prepare my body for reconstruction.  Herceptin treatments every three weeks.  Endless appointments with endless specialists.  Testing to make sure my treatment for cancer isn’t causing problems that could kill me when the treatments instead are supposed to save me.  And trials at holistic treatments in the hopes of fighting cancer and its evils while learning techniques that may help keep me out of the hole fibro wants to throw me down. 

So while I fight to hold onto my ability to walk, and my other symptoms do their best to take over my body, mind and soul, Christmas is coming.  And this year I’m scared.  I’m stressed.  I’m worried.  I want nothing more than to give my family a joyful holiday, one like no other we’ve had together.  You’d think after being a complete family for only two years, that would be easy.  After all my husband, my daughters, and I have been through these past seven months, I can honestly and humbly say we deserve it.  But this year that task may be harder than ever before.  To me, the perfect Christmas includes a house full of aromas as cookies bake in the oven,  a brightly lit tree decorated with ornaments that represent family memories, a pile of gifts under the tree, and family outings to see Santa, Christmas lights and other traditional holiday fun!  Each and every part of the Christmas holiday requires exertion of energy in some form or it calls for spending money in some way (yet another side to this year’s Christmas I’m trying to look past after all the spending that’s been necessary for medical copays and other expenses during my surgery recoveries and cancer treatments).  No matter how you trim traditions down to make them more manageable this year, the only way to truly avoid a flare and give myself a December of nothing but rest and recovery would be to cancel every part of Christmas there is.  And that’s something this Mommy is NOT WILING to even consider!!!   I warned my husband when we met right before Christmas that Christmas with me is like an elf exploded!  I can accept a year of toning things down for the sake of my recovery, but I can’t just cancel Christmas altogether. 

So I guess part of my new fibromyalgia Thanksgiving weekend each year is going to have to be some pretty intense planning to make these new Christmas memories happen for my family without the intense flares that could follow.  I’ve tried the past few years to make some changes that would help, but the effects have been minimal.  Maybe enlisting more help could be the answer.  Maybe ordering more presents online would help.  I know that some very intense bargain shopping is necessary due to our budget problems this year as I continue to pour money out to cancer treatments.  Maybe I won’t find all the answers I seek for some years to come.  But I know one thing for sure…no matter how badly I hurt, and no matter how many traditions we’re able to pull off this year, I need to place my focus on this thought:  I’m beating cancer so I can have more Christmases with my loved ones for years to come!  So what’s skipped this year may possibly be returned to us next year.  Christmas involves love, joy, and togetherness, and my successful treatments are helping me make sure that the “togetherness” part remains a part of our family’s holiday for many years to come!!!  I’ll just pray that everything else with the fibromyalgia falls into place as successfully!

 

Today I got a very scary reminder of the impact fibromyalgia can have on my life.  Colder weather was once viewed as being right around the corner.  However this year we actually had snow only days before Halloween, so when Halloween came there were still small piles of snow here and there as well as a few lawns still lightly covered.  And boy was it chilly!  The cold weather isn’t coming…it’s here!!! And I am now very scared.

Yesterday, Halloween, I did my best to give my girls a wonderful time!  I was lucky enough to have help for the day…I’m still not released to lift or carry my girls after my recent surgeries.  I was determined to not allow my restrictions or my fibromyalgia  ruin my daughters’ day.  When that happens, it ruins the day for me too because mommy guilt sets in and hits me hard!   We heard about a deal at a local restaurant for free children’s meals with the purchase of adults’ meals if the children were dressed in costume, so we took the girls to lunch.  Then we took them to watch the costume parade at the local elementary school.  They loved watching all the costumes, and both my girls love music so it was a special treat to see the marching band that led the parade!  I didn’t feel comfortable taking them trick-or-treating in our neighborhood not knowing many neighbors, so while my youngest was napping I planned to take my oldest to the mall.  But we were then surprised by an invitation from our friends to go to their neighborhood that night.  I was very appreciative, but I still took my oldest to the mall because I knew I would have a battle on my hands if I was unable to convince her to skip the mall since Mommy promised to take her.  So we spent one hour at the mall, and luckily it wasn’t crowded. My big girl did a great job helping her mommy by climbing in and out of the car.  Then we came home for a quick snack and grabbed Baby Sister to head for a neighborhood nearby for another hour.  Again we were extremely lucky!  I had a lot of help…my husband put my youngest in her car seat, and our friends helped get the girls out of the car once we got home.  They were even kind enough to set up a wagon for the girls if they didn’t want to walk the entire time.  (Mommy wished SHE was able to take a ride! haha).  By the time we got home we were all ready to eat and get into bed as quickly as possible!  It was a very fun but EXTREMELY busy day!  We were ALL HAPPY but EXHAUSTED!!! (Mommy most of all!!!)  The girls went to bed, and we had our usual nightly routine with some fussing from my youngest upon my leaving the room and multiple requests from my oldest asking to use the bathroom.  Sleep came shortly after, Thank Goodness!

I would have loved for my day to be done and my relaxation to be allowed to start, BUT that wasn’t going to be the case.  Since I’m now allowed to drive again, I’ve been trying to catch up on errands and chores that have been waiting for me while I recover.  Heavy- errands happen when I have help and more manageable ones happen when I can get away on my own.  So last night I ran to the store to grab some things that were needed as well as look out for sales to put my expiring coupons toward.  (In an ongoing effort to save money, especially in the midst of all the medical bills and other expenses we have due to my health problems, I’m forever looking for deals!  I’m an avid couponer…if I have the time, I walk through the store watching out for items on sale that I could put a coupon toward rather than waiting until we actually run out of the item and are forced to pay full price.  It really helps our budget, but unfortunately it adds a lot more time AND walking to the trip which isn’t always good for a fibro couponer!).  I did my best to be smart and keep the cart light.  I took my time checking out…I always use the self-checkout so I can pace myself and not feel rushed due to all the bending and lifting, and I have total control over bagging too.  Once I got home, my mom was there to stay the night as my helper for the week, so she helped me bring in the bags.  And thankfully my night was done…

…and I collapsed on the couch.  I was so sore I could hardly sit still.  My pain meds seemed to take forever to kick in!  Unable to get comfortable, I spent a few hours there in my living room, chilling out on the couch in front of the TV until I finally passed out.

My scary moment came this morning.  Upon waking on the couch, I realized I was overdue for my pain meds (It’s unrealistic to ever be able to keep up with pain meds around the clock because if I am going to take them as ordered, I’d be waking up every four hours each night!)  Pain meds and bathroom in mind, I tried to get up off the couch…and I couldn’t.  I tried a few times to stand to my feet, and when I finally succeeded I was trapped in one spot unable to take a single step forward.  I sat back down and that’s where my mom found me moments later.  My only way to the bathroom was with the help of my mother.  She walked me through the living room and down the hall like I was an elderly woman unable to use her walker.  I would like to say it was embarrassing but what concerns me even more is the thought, “what will happen when this happens and I’m alone?” 

Is this from overdoing it yesterday?  Is it because the colder weather is here?  Was I stiffer because of being on the couch all night rather than in bed?  And the scariest question…WILL THIS GET WORSE WHEN THE WEATHER TURNS COLDER DURING THE WINTER MONTHS?!?  We’re still in the midst of autumn, and we’ve had only one single day of frosty temps and one snowfall.  It’s only NOVEMBER 1st!!! If this is how OCTOBER 31st led me into a new day, what will happen in December, January, February and March?!?! 

Panic is trying to set in, and I’m doing my best to try to stifle it and move on with my day.  I’m currently resting in bed with my laptop so I can recover while trying to feel productive…blogging, couponing, checking Facebook for coupons and deals.  Walking has improved but not completely.  I’m scared…I see two of my three surgeons today, and I’m worried about how the exams they do will impact my flare.  I’m not sure when I’ll be allowed to do more, but I’ll find some of that out today.  With my fibro affecting me the way it is, it’s probably better for me that a doctor restrict me this way because I myself have a terrible time restricting myself.  I tend to push past whatever I can and then pay for it later.  And the tasks that I absolutely can’t handle are the ones that would put me to bed for a day or even longer, so I avoid those like the plague, knowing I need to do whatever I can to be able to care for my girls.

I’m eager to enjoy the coming holidays…Thanksgiving and Christmas are all about family, and I believe this family needs a lot of love, joy and fun after the past seven months of stress, fear, and heartache we’ve been through while fighting cancer.  But this current flare after only one tough full Halloween has me scared of what is in store for me this winter.  I had to lean on so many friends and family to get through cancer treatment, and we’re not done yet.  I don’t know what strength I have left in me…and I need what’s left for the cancer treatment that’s still to come.  I guess the only thing I can do is wait and see what happens and do my best to meet it head on.  Wish me luck!!

Today marked two weeks since my surgery date.  It’s been a solid two weeks now that I’ve been recovering from my double mastectomy, and those two weeks have been tough.  I’ve been dealing with all kinds of symptoms, some painful, some irritating.  My body has been showing me how many muscles I’ve used in ways I never even realized…the hard way.  Muscle spasms up and down my left arm and into my shoulder have been the most painful obstacle, especially given the fact that I can’t raise either arm very high.  New areas of numbness are something to get used to. Wearing a medical “sports bra” has caused chafing in many areas, and the velcro straps attached for the drains have an especially irritating way of being able to rub my skin just “right” to be a real pain!  Fibromyalgia flares worsen and make me wonder, when exactly will I get to the worst of it all?   And then there’s all the measuring and documentation of the drains and taking more pain medications round the clock.  It’s been a major adjustment. 

Until now I’ve been just battling all the physical aspects of the surgery, but now I have no choice but to actually acknowledge the “new me” and the psychological side.  The drains have come out, and I’m finally allowed to shower.  I should be ecstatic to have that intrusive medical equipment gone!  So why aren’t I?  Why am I stalling getting under that therapeutic warm water where I can lose myself and possibly do some of my best thinking? Piping hot showers are one of my most favorite pain management tools!   One of my most successful methods for treating chronic pain is now available to me again, and i can’t bring myself to embrace it!

What am I afraid of???  With each exam of incisions and sutures I’ve refused to look.  I’ve even gone so far as to turn my head as far as possible to prevent my excellent peripheral vision from doing its job and showing me scenes I’m not ready to see.  And just in case that failed, I closed my eyes.  I WILL NOT LOOK!  I don’t want to look.  I feel squeamish about looking.  But why???

Am I afraid to see surgical wounds that may make me sick to my stomach?  Am I afraid of pain that may come from removing an article of “clothing” that has acted like a brace for the last two weeks?  Am I worried I might cause more pain by a wrong move or too quick a touch?  Am I worried about looking disgusting…disfigured…different? 

 AM I STRESSING ABOUT ALL OF THIS???

It’s almost 2 a.m. and I’m not sleeping.  My husband is unfortunately fighting insomnia tonight too for reasons of his own.  Tears have already been shed as I attempted to share with him my fears and misgivings.  I would love to say to myself, “Tomorrow is a new day” as if it will help me feel better, more at ease.  But tomorrow is already here.  And I really don’t feel like it will help.  All I can do is try to find the strength to get into the shower come morning.  It should be just a shower, but for me, it’s another HUGE step in this journey I’m encountering.  Six months into the journey, you would think I would feel more prepared for these obstacles that lay before me. 

You would think.  After all, it’s just a shower.

 

When I started this blog, I had high hopes of visiting at least a few times a week, if not more, to share with readers both the ups and downs, the joys and sorrows, of life as a wife and mother with both fibromyalgia and breast cancer.  I was overjoyed by how much I actually was able to post during chemotherapy.  I felt like my blog had a huge chance to be an online- literary success, even if just in my eyes and those of my friends and family.  I thought as I fought my way out of the fog of chemo I would not only find more time to write, but I would also have more creative ideas and  many topics to discuss.   I started my sixth and final cycle the twenty-fourth of August, and I underwent my double mastectomy just two weeks ago…and I’m finding that I’ve been here very infrequently compared to what happened during chemotherapy.  All throughout my six months of treatment thus far I’ve been trying to remind myself of the importance of taking baby steps and celebrating all the little successes, and yet here I am bothered by the fact that I haven’t been posting.  I just realized tonight why that is…and it all boils down to a problem similar to one caused by my fibromyalgia…the search for balance!

I’ve been a fibro patient for about four years now, and I can’t figure out why I felt like life’s events to include blogging would work out better adding more health problems and complications to my plate than when I had just parenthood, fibromyalgia and my marriage to contend with.  Maybe I just had higher dreams and hopes with more battles to fight?  Especially when one of those involves a fight for my life?  Whatever the reason, I DO NOW have more battles to fight as well as two wars to win rather than one.  And as I don’t want my marriage, my children, my friendships or my household to suffer  now that I’ve felt a renewed interest in pursuing writing, I don’t want my writing to suffer either.  BUT…

That “revelation” still doesn’t help bring ideas to the forefront of my mind nor does it help find time each day to write without distraction.  I feel pulled in a ton of different directions now that the side effects of chemo aren’t an issue, even though the mastectomy has brought a lot of pain and weakness which have hit harder than I ever anticipated.  I think what does indeed help is being “present” during every moment of my fight.  Rather than sticking my head in the stand so I can hide away rather than face the scary head-on.  And that motivation to staying present will hopefully motivate me to write more often too!  I know that if I keep my eyes and ears open to any muse that may cross my path, I will find more than enough to reflect upon and share with my readers.  With eyes and ears open I can remind myself to pay close attention to all life has in store for me, and that will give LOTS of opportunities to blog!!

 

So I tried to enter an essay contest…didn’t get the entry done in time and when I tried to paste it into an email, the format got all messed up. So I’m pretty sure they won’t even read it. It’s missing some thoughts I wanted to include but there was a required word max. Anyway since it has no chance of being published due to the errors of time management and email problems, I thought I might as well publish it here. Hope I did well!  The topic was when did you first learn the meaning of love?  (or something to that effect…deadline was only 8 minutes ago and the website already deleted the description of the theme. Tell me what you think…I’m sure I’m still drafts away from publishing but I wanted to at least try to get something sent in.

 

Valentine’s Days filled with chocolates and greating cards adorned with hearts and doilies.  “I do’s” and champagne toasts to a happy couple.  A feeling of never wanting to fall asleep while cuddling a sleeping newborn.  These precious moments bring to mind different meanings of love.  I’m the lucky mother of two beautiful daughters who celebrated my fourth wedding anniversary a few months ago, so I’ve lived through each of these milestones and surrounded myself with the love that comes with each one.  But nothing in this life shouts the meaning of love more than the life I’ve lived since I was diagnosed with breast cancer this past spring.

As a parent who suffers from fibromyalgia, I learned four years ago that a sound support system is essential for not just parenthood but to be able to stand strong as an individual.  One day I was returning to my classroom to begin a new school year, while the next I was finding myself disabled, spending days home alone with nowhere to go but doctors’ appointments and little to think about but intense pain and the new symptoms.  It was a devastating blow, but the greater battle was within myself as my symptoms grew progressively worse and took more and more activities away from me.  Independence was no longer something I recognized.  And the mommy guilt over what impact this was having on my family at times became almost too painful to bear.  Love of myself was often a distant memory as I fell further into the abyss of chronic pain.  Love from others was a gift I treasured for I knew fibromyalgia could put that in the same jeopardy my job suffered.  Little did I know that a different attack was on its way.  I was to be tested again, and I was going to need love from others to help pull me through.

The words “You have breast cancer” put entire families into a tailspin.  It certainly did ours.  My daily battle with fibromyalgia turned into a fight for my life overnight.  Rather than keep the news to myself, I chose to plaster my Facebook account with informational updates, requests for prayers, and ideas of what our family needed to deal with this.  And my support system did not let me down!  I’ve been blessed to read supportive comments on a daily basis.   Friendships that I knew were solid grew to a level I never imagined as people literally came out of the woodwork to be present for me.  My parents told me that nothing was more important than my care for the next year of their lives.  Even a few who I had thought had written me off took the time to share with me a few words of encouragement.  Love gains a whole new meaning for someone who is facing her mortality so closely.  Every act of kindness takes on a completely new level. My battle with cancer gave me a whole new outlook on what “love” truly means.  And while I had thought I was always someone who put “love” into action, I learned sitting in a very dark place how important it is to others to truly live love on a daily basis and not just utter the word that can end up having no real meaning behind it.

When we share our marriage vows with another, we don’t expect them to be put to the test so early.  At thirty-five, you wouldn’t say I was exactly young when I married.  But neither my husband nor I expected a to-do list of medications, bed rest and hospitalizations on the eve of my fortieth birthday!  Chemotherapy and the medications prescribed to make it an easier ordeal sucked the life out of me for a week out of every cycle, and the functioning I kept from the grasp of fibromyalgia suffered in its wake too.  I slept for days after each dose while my husband raised our children.  I was oblivious to the world around me as I slept twenty out of twenty-four hours away each of those days, and I was happy for it to be that way so I wouldn’t feel the pain the narcotics could barely control.  Now that chemotherapy is over, while I celebrate the end of the pain and nausea, I am more grateful that our marriage wasn’t one of the ones to crumble in the face of such a difficult challenge.  After seeing how many marriages fall in the face of disability like fibromyalgia, I was worried ours couldn’t possibly survive another ordeal, especially one as tough as cancer.  But we made it through the weeks of chemotherapy and are now looking ahead to the surgeries and radiation that follow.  Devotion like that is a test of love many hope to never have to endure, and as I watch the tumor inside me shrink I know that it is the love of my husband standing beside me that has given me the strength to move on with my treatment, not the words of my doctors or witnessing the success of the chemotherapy.  My husband has told me time and time again these past summer months how he feels…that whatever it takes, he hopes I choose the treatment plans that will ensure I’m here for him and my beautiful girls.  Rather than feeling ugle with the loss of my hair or mutilated after the loss of my breasts, I feel confident and strong because I know my husband’s love for the person I am is stronger than his love for anything that gives me my appearance.  And that is one kind of love I’ve gotten to know very closely and very quickly during this journey!

As children growing up we can probably all remember days when we hear from our own mothers, “You’ll understand one day how much I love you only when you have children of your own.”  I thought I knew the strength of that kind of mother’s love after I had delivered each of my children.  I had terribly difficult pregnancies.  My first is when fibromyalgia took its hold on my life, and my second was riddled with constant fear and worry that it would bring with it the same difficult symptoms and scares that my first pregnancy put me through.  I was elated to meet each of my children after their c-sections, and I was determined to show them as full a life as my disability would allow me.  But when you hear, “You have breast cancer.” every thought leaves your mind except the ones like “I need to be here for my children.” “What if this is genetic and they have to feel this pain.”  “Will I grow to see them marry and become mothers?”  The love inside multiplies at a greater rate than anyone who hasn’t endured this kind of scare can even imagine.  The heartbreak I felt when my oldest asked me, “Do you have a doctor’s appointment AGAIN?’  The crying I watched as my youngest was pulled from me, not able to understand that the radiation given during my medical testing didn’t allow me closer than three feet and kept me from picking her up, hugging her and telling her Mommy’s going to be alright.  The crying I heard from my bed as I dozed in and out of consciousness as they wondered aloud to their father why Mommy was still in bed.  Each of these experiences tested my faith as well as my inner strength.  My love for them gave me the drive needed to get through this fight for my life, for I knew I was doing it out of love for them and my husband even more than I was doing it for myself.  I still had much work ahead of me as their mother, and I wasn’t about to let that go and let cancer win. A mother’s love has strength beyond almost any other form of love on this earth.  But when that love is put in jeopardy by an outside force like cancer, it grows and grows to a greater power than any of us mothers even thought was possible.

I’ve always prided myself on being a good friend, a loving child, a faithful wife and a caring mother.  Before cancer, I thought I knew what living with that goal entailed.  After cancer, I know better.  The drive behind everything…our goals, our dreams, our actions…it all comes from love.  Love is what pulls us through.  It’s the glue that holds my family together.  It’s bond that keeps my friendships solid.  It’s that light at the end of the tunnel when we fear we can endure no more.  Love may have different meanings, but it’s at the root of everything we do.  Love got me through cancer, and I will forever live my life going forward trying to share that message with others who may be running through life too quickly to learn that lesson for themselves.

 

 

It’s funny how fate works!  I’ve mentioned before how strongly I believe in signs and how important it is to focus on their messages while working to stay positive on this journey I’ve been on these past few years.  I think I’ve become more aware of the signs put out there for me since this cancer journey has started than I was dealing with only the fibromyalgia.  I’m not sure why.  Maybe so much more is on the line when you receive a cancer diagnosis.  Maybe life becomes more complicated with all of the appointments, tests and treatments that “life” feels the need to step in and offer more support.  Whatever the reason, I’m grateful for whatever assistance comes my way!

So I had another opportunity this week to feel the effects of life stepping in and offering some support.  A few weeks ago one of my awesome mommy club friends told me about another mommy club member dealing with similar health issues.  I hadn’t seen this mom in quite some time.  I can’t recall how long ago it was but I do recall my youngest being much younger.  After hearing about her going through the same ordeal, I made a mental note to try to seek her out through Facebook friends or any moms from the moms’ group that may still be in contact with her. I hadn’t been able to attempt it yet…life was too busy for me to remember to try, and when I did think about it I didn’t have the time to make any attempts because instead I was trying to get things done to make up for the time I was bound to lose at the start of this chemotherapy cycle.  So this Wednesday arrived and I came to the hospital for my chemo…and instead of trying to find her through the Internet, Fate put her right beside me!  She came in a few minutes after I settled into my lounge chair and in a matter of minutes we realized who the other was!  It was such a lovely surprise and a great way to start this chemo cycle!  It was such a surprise that I felt the need to share the experience.  Her appointment wasn’t as long as mine, but it was such a great way to pass the time…sharing news of our little ones, comparing notes of our treatment plans.  What I got most out of the conversation (above and beyond reuiniting with an old friend) was first, hearing some advice on how to proceed with my surgery and second, knowing I had somebody my age who was also a mother that I could now turn to for advice and support!  My friends have been wonderful and right beside me through all of this, but none of them have gone through this firsthand.  So it’s nice to have a new “breast buddy” to turn to!  I would never ever wish something like this upon anyone, let alone somebody who is such a nice person, but it always helps to have somebody who can relate to what you’re going through, especially when it’s such a difficult experience to endure.  We exchanged contact information and are now Facebook friends, so hopefully this will be a friendship that will provide each of us some much-needed support and give our children a chance to have fun with a new friend.  I never expected this reunion to occur, but I’m grateful that it did, and I’m sure Life put us in each other’s path for a good reason!  Always keep your eyes open for any signs or assistance Life offers you!  You might not feel like you need it at the time it makes itself known, or maybe you’re in dire need of it like I have been throughout this journey.  But no matter what, these are wonderful gifts being shared, and we should all accept them with open arms and gratitude!

Hello, Little Person! How are you today? Is you mood quite terrific or only okay?  Are you happy as a hippo?  Or angry as a duck?  Maybe sad as a chicken? (Can you sadly say “CLUCK CLUCK”?)  Are you…grumpy as a moose?  Or excited as a dog?  Worried as a rabbit?  Contented as a frog?  Perhaps, like a pig, you are sweetly amused.  Or perhaps, like a cow, you’re completely confused.  You might feel that, somehow, you’ve lost all your fizz.  Or you’re frazzled like a …um…frazzled thing.  (I’m not sure what it is.)  Well, I hope you are happy.  But if you are not, you have friends who will help you.  We all like you a lot.  And a difficult mood is not here to stay.  Everyone’s moods will change day to day.  Unless you’re that duck.  He’s always this way.

I hope Ms. Sandra Boynton doesn’t mind me borrowing her words from the book we read at bedtime tonight, Happy Hippo, Angry Duck, but it was almost like it was calling out to me to share it tonight!  Cycle 5 has been a tough one.  I’m not sure why my fibro has been flaring so badly, and it’s been so tough that my new pain meds aren’t working very well to help me battle those flares more successfully.  However Hubby’s pain has been more intense, and as badly as I’ve been hurting these past two weeks, he needed more recovery time than I did some days.  While I have intense, level 6/7/8/9 pain all over my body much of the time, he has a constant headache that offers no relief and can become disabling in addition to back pain that can go off the charts.  I’ve dealt with many migraines related to  my fibromyalgia, and I know how tough it is to function with a vice-grip on your skull trying to knock you on your butt.  I can’t even imagine having a day when my meds don’t touch the pain enough to offer even some relief for even a total day.   So I’ve tried to give him as much time resting in bed while I care for the children as I can on my better days during his summer off.  I’ve tried to take care of more errands on my better days too.  Unfortunately all this activity is doing its usual number on my fibromyalgia…physical activity causes flares for my form of fibromyalgia.  So trying to squeeze in chores, errands and childcare in an effort to make up for lost time due to chemo recovery in addition to trying to give Hubby his time to care for himself after caring for the children on his own for close to a week straight are bound to cause some pretty intense fibro flares.

I’ve never been able to achieve a balance throughout this fibro journey…finding how to take care of the house and get the children out with help in a way that everything gets done but I’m not flaring so much.  When you throw in cancer treatment to include chemotherapy that takes away close to a week every 21 days followed by surgery and radiation recovery along with the “usual” fibromyalgia battles and a husband who needs extra support dealing with pain similar to mine, “BALANCE” seems impossible. ”BALANCE” itself becomes an obstacle much like the pain.  Fibromyalgia and cancer are two conditions that each bring with them more obstacles than a person believes they can overcome during their initial days with the diseases and further down the road on the tougher or “lower” days.  It’s scary to have yet another obstacle thrown into the mix when you already feel like you can’t handle what’s already been dealt to you.  And it’s these obstacles that can really lead me (and others, I’m sure) to feeling down.  Lately I’ve been feeling more and more of those kinds of days.  It’s been really hard to accept fibromyalgia and the need to have the help of others with getting my house in order and my girls out for fun times with other children.  But summertime is THE time when you’re supposed to be out having fun, grilling delicious dinners, swimming and heading to fun places like Sesame Place.  And between my chemo side effects, fibro flares as I play catchup, and my hubby recovering from having to be a parent with no help 24/7 while I’m stuck in bed (and this cycle leading almost no days for us to be on the same page as far as working together to get the girls out for fun times), we’ve had VERY little of that this year.  Summertime has always been my time.  So it’s almost like I’m grieving. Here it is August 2nd already and we haven’t enjoyed Sesame Place, our pool, or any of the other outdoor activities I was hoping to be able to enjoy as a family.  Our grill hasn’t been used.  And we’ve had to miss a lot of family events as well as cancel on other fun times with friends we were looking forward to thinking we may be able to make happen only to find it wasn’t to be so.  We’ve been able to have a few playdates…we made it to Bouncing off the Walls once and were lucky enough to see friends there, and we’ve enjoyed a couple playdates with friends.  But as a certified teacher of early childhood and elementary education, this is a tough pill to swallow!  Fibro held us back from a lot of fun times, but the chemo and upcoming treatment are taking away so much more time from my children.  I tend to “feel” in cycles, going from strong and positive (my “up” on the rollow coaster) to depressed and angry about all the effects I feel this is having on my children and my ability to parent, as well as my ability to have fun with my children.  I was so active as a child especially during the summer months off from school.  So this summer is hitting me even harder than others during my fibro journey because my limited ability to give my children an active summer is even more limited by the cancer treatment.  Between always wanting to give my children the fun and educational early childhood I had and my own love of summertime fun, depression resulting from missing out on so much has been extremely difficult to fight off!

The reasons why this book seemed to appear at the perfect time tonight are those you have now read about…the sadness of an unfulfilled summer has been hitting me hard these past few days.  It was probably the changeover from July to August that really caused the sadness to hit  me hard.  Once August arrives, it’s clear that summer is close to being over.  I never want summer to end! I never have, from a young child all the way into adulthood, because I’ve always had a long list of fun I’ve wanted to fit in!  Having so much not yet enjoyed with so little time to fit any of it in is a hard thing to deal with. 

Even though summer doesn’t bring me the remission from fibro that others may enjoy, I still enjoy the warmer weather because of how disabling cold air and the weather that comes with it can be.  But I also have always enjoyed summer as my favorite season, despite Christmas being my favorite holiday.  Sledding and and playing in the snow never compared to swimming, biking and other outdoor fun, and as an adult I would much rather enjoy my favorite outdoor activities than work hard clearing my car of snow while I’m trying to keep from falling on my butt on the ice!   And being cold and wet in freezing weather doesn’t make me very happy either.

So back to our book reading tonight…Today I took my oldest out with me to run some errands thinking that at least getting her out will help me feel like I was doing something good for her.  I try to fight the feelings of guilt that my youngest is left behind because the fibro keeps me from traveling around with her due to the lifting that’s still required to take her places and care for her eating and diapering needs.  I don’t always win the fight with that guilt, but at least I feel good about giving my oldest some alone time with me and a chance as the oldest to learn some more about how the world around her works.  But all those feelings of joy from the great afternoon with my daughter fell by the wayside as I lost most of my ability to walk after making dinner for the family.  Even though we were only out for about three hours, once again I had tried to do too much in the course of a few hours, and the pain was excruciating.  I could barely eat my dinner, I was hardly able to help much with getting the girls ready for bed, and I had to ask my husband to help me get my dogs outside tonight because when I left my bed it was apparent I wasn’t strong enough in my legs or hands due to the pain to deal with holding their leashes or them pulling on their leashes.  Yet again the sadness started coming at me hard as early as sitting with my family over dinner.  I tried to sound upbeat while talking with my girls during our bedtime routine; I just couldn’t physically be there helping them.  And then we went to the shelf to choose the book for the night.  I suggested this title, my fibro fog not letting me remember what it was even about.  Imagine how good the words felt, sharing them with my daughters on a night when I desperately needed to hear them!  We giggled over the “sweetly amused pig” and my oldest claimed to be the “completely confused cow” once I explained to her what confused actually meant.  She never ceases to bring a smile to my face, and sharing this silly book really helped that smile mean more than the usual amount of joy it usually means. 

 Today I had several reminders of how lucky I am even though I’m battling fibro and cancer!  This afternoon I got a call from a very caring friend to check in on me.  Even though she herself is battling a tough form of fibromyalgia, she’s still taking the time to check in with me.  Fibro may be making motherhood tough for her too, but she still hasn’t forgotten me nor has her pain forced her to stop being a good friend to me.  Even though fibro has found the ability to limit my chances for fun with my children, I was able to hold off a completely debilitating flare that sent me to bed until I could squeeze in a few hours with one child.  And I proved to myself that I am able to be strong enough to find ways to make dinner for my family, even though it’s not every night.  I need to remember to celebrate these small successes, even though it is near impossible to feel good about them when they seem to come farther and farther from each other.  Even with the good feelings I felt today thanks to the good people in my life, I still allowed depression to sink in and help me feel sad and sorry for myself as I grieved for what felt like a lost summer.  I allowed myself to focus on the failure of fibro instead of the success over cancer which should be more important at this stage of my life.  And it took a children’s board book’s message to remind me of that lesson.  “And a difficult mood is not here to stay.  Everyone’s moods will change day to day.”  I think this is a lesson everyone should try to keep in mind, but for me it’s a harder lesson to hold onto.  I’m not saying I’ve given up…just saying that I have to fight harder and harder than I’ve been successful doing recently.  If I keep looking for those little signs like I did tonight with this book, and I keep collecting hugs and supportive comments from all of the loving people in my life, maybe I can just overcome this obstacle with the same success that so far I’ve experienced with breast cancer.  Some days I may be sad as the chicken or worried as the rabbit.  Hopefully most days I can find myself being happy as the hippo or in the least contented as the frog.  I came to terms months and months ago that I’m destined as long as I have fibro I will be like the cow and completely confused!  (Thank you fibro fog!!)  As for the duck?  I need to make sure that my moods keep changing day to day because I can’t afford to be like the duck and always have my difficult moods here to stay!  (If you’ve found your difficult moods staying around a bit longer than you’re comfortable with, find something that brings a smile to your face!! Even though my mommy guilt is a tough thing to kick, the smiles and laughs that I witness with my girls are the best medicine for fighting difficult moods…and apparently all it takes is opening a book together to bring that about for the three of us!)

I’m back from my post-chemo hibernation.  It’s now Monday afternoon and slowly but surely the haze of chemo’s side effects is wearing off.  As I sit here receiving fluids, doing anything and everything within my power to help my body trudge along, I thought I would share with you an article I read over the weekend during a brief encounter I had with a magazine.  And I say brief because as with previous cycles, I was unconscious much of the time.

The August issue of Oprah Magazine arrived sometime ago, and this weekend when I had a chance to read a few pages I came across an article entitled “In Sickness and In Health?”.  Its timing was uncanny, and its effect was powerful.  In only two pages the author reiterated something I’ve already been telling myself and others…I’m very lucky to have the husband I have during this fight with cancer because others aren’t as lucky.  Ms. Bryan relayed stories that sounded much like mine before fibromyalgia…lives which began as only a wonderful dream could play out, only to do a complete turnaround and become a nightmare from which anyone would wish to awaken. New relationships, new marriages, new beginnings in new cities with plans to share a future as one.  Then the nightmare of a cancer diagnosis struck, quickly tearing apart what each couple had worked so hard and lovingly to build.

One cancer patient was quoted as saying, “Most people, when they think about ‘in sickness and in health,’ imagine themselves at age 70 or 80, with their spouse in bed with pneumonia.  They’re not picturing having a sick partner when they’re young – the months of treatment, the financial challenges.  Cancer throws a lot at a couple.”  Ms. Bryan goes on to tell us that women are more likely than men to be victims of what’s known as partner abandonment.  “A 2009 study published in the journal Cancer found that a married woman diagnosed with a serious disease is six times more likely to be divorced or separated than a man with a similar diagnosis.  Among study participants, the divorce rate was 21% for seriously ill women and 3% for seriously ill men.  A control group divorced at a rate of 12%, suggesting that if disease makes husbands more likely to split, it makes wives more likely to stay.”

These are scary statistics to consider.  I’ll be honest.  I’ve been disabled from fibromyalgia for over four years now, and to say the condition and its effects on my life have made an impact on my marriage is an understatement…a DRASTIC understatement.  When fibromyalgia hit, I truly felt like I had the fairy tale life I always wanted.  It was the summer after my wedding when everything started going haywire.  I had already found my dream job, teaching middle school Language Arts and Social Studies.  I had found my dream husband and together we were working on renovating his family home to be something to reflect both of us.  We were both hands-on, creative people so this was the perfect project to collaborate on!  And now we were eagerly awaiting the arrival of our first child, a child wanted so badly that we actually didn’t wait for wedding vows to be exchanged to start trying to become pregnant.  (My husband still proudly tells the story of how stubborn he thought my eggs would be at the “old” maternal age of mid-thirties, convincing him that we needed at least a year to successufully become pregnant.  A pregnancy test taken two days after my wedding would reveal that my eggs were not so old…or stubborn.)  Two months later fibromyalgia started to sneak its way into our lives a day or two at a time.  By winter it changed its tactics from sneaky visits to full-blown assualts, affecting every aspect of my being as a mother and wife.  The role of teacher was lost.  My body just couldn’t fight the pain successfully enough to function as anything more, no matter how much I missed my classroom.  And sadly my brain function was also impacted.   There are just fewer things to forget or mess up as a wife and mother without a career.  I would only screw up  my own children or my  own household rather than a classroom of twenty-some children when fibrofog took a hold.  As sad as that made me, my responsible self knew it was for the best. 

These were scary times.  When chronic pain is involved, EVERYTHING is touched!  Household chores, hobbies, meals, routines, errands, childcare, intimacy.  And when pain affects cognition, tasks controlled by memory and organization are hurt as well.  Nothing escapes.  Any activity requiring energy or touch is affected by pain.  And when couples have this much working against them, relationships are bound to suffer in one way or another…or many ways.  After all we had already been through with fibroymyalgia as a couple, hearing my cancer diagnosis was scary on not just a personal level (that of my own health and mortality) but also on the level of a couple doing everything they could to cultivate a relationship despite the obstacles chronic pain puts in their path. 

This article brought to mind some concerns I hadn’t thought of as well as some that I knew about but didn’t think would be an issue for us.  One of the authors of the Cancer study stated that “the majority of husbands take excellent care of their partners, but men on the whole tend to be less comfortable doing so.”  I’m thinking that our situation of including child care as well as spousal care put a double-whammy on my husband in this regard.  Having a stay-at-home-wife, even one who is disabled, probably tends to leave husbands feeling quite certain that their children are well-cared for, but then when their wife is further incapacitated and childcare is left to them, I’m sure doubt and a sense of uneasiness about one’s skills can quickly set in.  The article then discussed how the absence of emotional support can make this job even tougher.  This is an area where I’ve found myself frequently encouraging my husband to seek out support from others.  “While women turn to friends, counselors, or groups for the help they need, men don’t.  A man typically relies on his spouse as his main confidant, and when that spouse is sick, he can find himself in a downward spiral of isolation.”  Patients of chronic pain can also find themselves suffering from depression.  And those who are depressed can find it very easy to isolate themselves from others.  I’ve done everything I can for both our sakes to keep that from happening.  It’s not beneficial to either of us or our children to isolate ourselves from the world even if it may feel like the easier route to take.

This last comment I read is the one I would have never considered…”a fear of abandonment may also play a role in a man’s reason to leave.  Men tend to be less emotionally resilient than women, and a husband may withdraw from his ailing wife in a subconscious effort to minimize the pain he’d suffer should she not survive.”  Reading these words made me sad for those men who feel this way even if by saying it’s a “subconscious” attempt to deal made it not their fault or intention. 

I can confidently say that my husband doesn’t have any plans for abandonment, subconcious or otherwise.  I’m sure of this because we’ve had many conversations about his fears and intentions during this most recent journey of mine.  The other night it occurred to me that I hadn’t discussed anything more than my own fears about the possibility of mastectomy.  So I decided to bring up the topic to see how he felt, and it was very comforting to have him talk more about treatment plans that ensured I was around for a very long time than my fears of seeming disfigured…or worse.  And I was able to share with him my fears about surgery and how recovery from mastectomy and other surgeries scare me with the fibromyalgia still to contend with.  We had this talk the night after he packed up our two daughters and took them to a friend’s house to play and swim while I stayed home and recovered from this recent chemotherapy treatment.  So given all of that, even though we still have miles to go before we get this down perfectly, I think it shows we’re doing pretty well dealing with these blows, partners banding together to fight my illness and achieving a closeness we didn’t find through fibromyalgia alone.  Maybe I’ve found yet another blessing in all of this, one I wasn’t initially expecting or looking for?

I focused earlier on my blessings, but now I’m taking some time to allow myself to vent.  As I get closer and closer to yet another side of this difficult journey, all the while feeling some pretty bad days of fibro (while it was great to get away and visit family, the hotel beds, long car rides, and helping Hubby pack the car- he does the heavy lifting while I stategize where everything goes, a genetic trait I inherited from my father, the ability to fit luggage into the back like perfecting puzzle pieces – have done a number on me and put me into a terrible flare that’s not responding well to my meds), I’m feeling a mix of worry and tension that are hitting me rather hard. Besides being anxious about surgery, whatever surgery it may be, I’m nervous about making the wrong decision for myself and my future.  I’m in a place I don’t want to be in…deciding whether or not to have them perform a mastecomy (single or double) or a lumpectomy.  I’m going to be bogged down with even more appointments because it’s time to see the surgeon and genetic counselor.  I just don’t feel ready to handle all of this, especially with the anticipation of how I’ll do this cycle considering all the side effects I suffered during the last cycle. And the worry about fibromyalgia’s role in my surgery recovery isn’t helping matters either. 

I WANT MY LIFE BACK!!!

While I LOVE EVERYONE who has rallied by my side to help me through all of this, I really REALLY miss being in control of my own life and not having to be in need of so many helping hands!!  I desperately want my brain to function as it once did so I don’t make as many mistakes with such everyday tasks as doctors’ appointments and following directions.   I don’t like having days when my husband is worried about leaving me alone with my children due to side effects of medication.  I hate trying to keep up with coordinating all of the treatments with child care and now having to take into consideration my husband’s appointments, something I am having trouble remembering.

I miss being able to take care of my own house and family!! If I cook dinner, cleaning up afterwards is not usually an option.  If I run errands even within a distance as short as ten minutes from my house, cooking dinner is many times out of the question.  I’m bothered by the fact that I can take my oldest child out for quick outings because she can climb into the car, but I’m almost wishing my youngest child’s toddlerhood away so she can do the same thing and not be left at home. 

I miss being able to do things in life without having to schedule around medical appointments, chemotherapy treatments, recovery days, side effects, fibromyalgia, help with the children!!  I just want to be able to do what my friends do…load up the children and GO!

Everyone told me I was due to lose a lot of weight with chemotherapy! I’ve barely lost ten pounds!  LOL  If I’m going to feel so sick for so many days, where’s the weightloss I was promised? LOL

I want my brain cells fully functional again!! I want the effects of fibro fog to be a worry of the past! I want my old self back…the ability to multi-task, to type my blog while Hubby talks to me so I don’t then end up typing what he said instead of what I want to say! 

I don’t want to tackle these tough decisions that lay ahead of me during the second half of my chemotherapy!! And I really don’t want to undergo surgery of any kind,.

I WANT TO HAVE SUMMER FUN WITH MY KIDS!!    There’s certainly more to bitch and moan about but I think I’ll save that for later!  Now that I have it out of my system, hopefully I can stop focusing on it for a little while.