Recovering and Surrendering

All I really want to do tonight is share stories about the most recent birthdays in our house, including the birth of our sweet 6th child back in October, but I am haunted by this thing that happens once chemo builds up in my body round after round after round.

This morning, I woke in extreme pain.  Walking on my feet felt like the biggest burden I've been given, so I was extremely grateful my husband had a day off and was able to tend to the children while I slept in a bit.  Honestly, I will give the children the highest credit to sleeping in because most days they willingly take Gavin in the morning so I can sleep in.  Today, sweet Aiden took over Gavin's care so that Daddy, too, could rest a bit.  Once I was up and wobbling, Lydia asked if today would be a good day for doing exercise videos, and I sadly had to let her down by telling her how much pain I was in.  Her response was well deserved, as she stated in frustration, "you always are like that," and that, my friends, is sadly true.  Some days, I wonder if I will be able to make it through this life in so much physical pain, but I'm trying to take it one day at a time so that I can truly live in the moment.

Then.....food came.  After this last round of the red devil, as it has had 3 months to build it's levels and toxicity to fester in my body, I have learned some techniques to getting food in me.  Then there are days, like the last two, when swallowing hurts so bad that I indulge in one bite of my meal and have to call it quits.  The sores in my throat are raw, and I'd rather starve than feel them.  At about the same time each night, I have to run through the house to the bathroom because the wee bit of food and fluids are churning in my tummy  and begging to come out.  Luckily, the toilet gets most of the projected contents of my tummy.  At times, I am heaving so violently that the wall behind the toilet gets a covering of the nasty mess.  I just finished wiping the wall, toilet, and floor off from my outburst, and as I came out of the bathroom Aiden says, "I heard it....", and I'm thinking, "That's almost worse than 'I did it' when it comes to vomiting!"

Last night, I had the grand idea of having a movie night with my sweet daughters.  They share a bed right now, and if all three of us are positioned just right, we are able to sleep side by side and enjoy the warmth and cuddles from each other.  It was one of the most wonderful things to lay in bed with them, have their sweet heads resting gently on my body while we all watched a movie on my laptop.  They told me moment by moment, "thank you for doing this with us Mommy...I love you so much!"  Since being diagnosed and treated for cancer, I have found that the trial in and of itself can be very hard to hand over to God.  People make it sound like it was an easy task to move from a type A personality to a very laid back, non labeled personality who simply lives in the moment, loving life.  While it isn't easy, by any means at all, I do believe that it is a choice as well as a natural response to having your mortality stripped from you.

Something very hard to describe has happened to me.  I will attempt to make sense of it.  I cried every day of the last 9 months until recently.  As the storms have calmed, I have attempted to simply allow myself to breath in and out, enjoying the sound and feeling of each breath.  I have found the purest joy in sitting with my children and feeling their little feet against me.  Honestly, I have even asked my boys to stretch out so I can feel their precious bodies, alive and well.  While I was laying in bed, trying to nap, my husband placed his hand on me yesterday, and I took it from my shoulder and wrapped it into my arms and just held it for as long as he would let me.  Having this body, that can breath, feel, and bring joy to others and myself with is the most precious gift in the world.  It may not look as beautiful and healthy as it once did, but laying in bed and having inflammatory drugs in you most of the time over the last 9 months has caused a muscle wasting effect that has left me unrecognizable to the me that has walked on this earth sine 1980.  I feel burdened by the effects of being sick, but I've also found the intense gifts that surrendering those disappointments to God can have.  In living in the moment, appreciating the joys in my life, I have found that the dark unknown begins to dissipate.  That's not to say that their isn't grief and sorrow attached to this disease and what it continues to do; my children, especially, have these awful fears of not having me with them when they are older and need advice on who to marry, or when they are getting married, having their children, and living their dreams.  The girls most often will tell me of these fears that plague them; it breaks my heart.  I, too, want to give them advice, watch them marry, have children, share themselves with this great big world, and then comfort them when their hearts break.  I have felt it necessary to tell them that even if I am not here, they will always have the privilege of having me as their guardian angel, standing by to comfort and love them.  Those are hard conversations.

I use to dwell on a scripture in the Bible when I was a teenager.  It referenced the power in taking no thought for what you will eat, drink, or do for tomorrow, for tomorrow will take care of itself, being sufficient for a day is enough.  I never really understood that when I had been coming to recognize that God must be the massive planner in life for all of His words to come to be and for this great plan to exist in the first place, with an Earth positioned perfectly to the sun so as to not burn us to death, and the symbols of the Earth to our bodies to be so perfectly tuned.  The Earth is 70% water, while our bodies are built with water and fluids taking up about 70% of it's composition.  All of the perfectly placed pieces did not sound to me like God desires us to take care of ourselves today only.  And that is true, that is not the point of that scripture.  What it truly means is that we have no power to change what yesterday was, and no ability to even know if tomorrow exists, but we have today--this very moment--to feel, love, give, laugh, touch, admire, compliment, advise, and simply exist.  The gift of being happy by existing has not been something I willingly asked for, it is a gift I have been given in the depths of tribulation when I then willingly asked for it because I felt like crud every day for way too long.  Therefore, I give all the credit to God for allowing me to find joy in every moment which teaches us what pure unconditional and true love really are.  Funny how my teen scripture pondering comes to mind as I contemplate where I am now--it is clear to me that divine intervention has always existed with me, and it does with all of you as well.  God, who advises us to live for today, every day, has planned a beautiful reception for us if we will surrender our hearts and minds to Him.

Tonight, I will live by faith that these side effects will ease.

Today, I felt joy and love with my family.  They may not have seen me glancing their way, admiring their beauty and growth, but I did.  I will do it every day that The Lord allows me to exist here, in mortal form.

That is a good way to end a hard recovery day.

What No-one Said About Death By Poison

Okay, so let's set the honesty factor to 100 and have a conversation about the horrors of being poisoned to death...

I have watched many episodes of forensic piles, seen the occasional psychological thriller, and walked away thinking, "oh, how sad.."...

Forgive me NOW, please....this isn't a sad thing, it is a down right cruel and unusual way to kill someone--especially if you allow them to linger in that state of irrationality and conflict for extended periods of time.  This is hate--ugly, deceiving, and soul deadening hate. 

Yet, to the cancer patient who has willingly signed all of the papers which clearly state that, 

"nausea, vomiting, diarrhea, intestinal cramping, peripheral neuropathy, bone and joint pain, hair loss, fatigue, weakness, heart failure, leukemia, risk for infection, and bone loss," will be a a part of giving me the consent to place this poison in your body via way of the strongest arteries that feed straight into your heart, so as to not kill the artery first, we'd say "Dang...(long awkward pause as the mind debates life and death in a matter of moments, AGAIN, because we all know that debate happened the moment you first got the distinct feeling of 'I have cancer')...well, here we go!"  Cancer patients are completely INSANE!  Mind you none of the listed side effects mentioned the more complicating counterparts of depression, anxiety, PTSD, psychosis, and the day after day and month after month tears that seem to have a mind of their own.  No one ever told me that one day it would be only me crying, and that an odd sense of "do I even belong here anymore" would settle in to haunt me as I solemnly stared at every movement the children would make without me in it--feeling as though the undertaker had already come and gone.  

Now that is a big lie.  

No one told me I would hear my own voice telling...myself, of course, how bad I lie.  And then no one told me that the lies would keep coming, and almost sound believable at times.  Does a newborn infant really need a Mommy to survive?  I've hardly touched him in days, and Daddy seems to have an innate bond with him.

Would my husband rather I die since I'm such a burden anyhow?  He's mentioned that he can't continue like this long term, but what if I am willing?  Will I eventually have to live alone just to fight for my life?

The pain never ends.

You got the best of both worlds--the very end of your 6th and hardest pregnancy plus a breast cancer diagnosis--you know what that means right?  You've done the research by now, and it's all out there, especially triple positive breast cancer....you're always gonna' be HUGE!

Those are just a few of the lies--they get deeper, and uglier. 

By that, no one ever told me that treating my cancer would effect not only my body, but my brain.  If there is anything I know, it is that the brain is the most fragile organ, for it speaks to our hearts what we think we know.  Cancer will always have one believe that they must be going ballistic, because this can't be a normal coping process, but believe me, it is.  Regardless, normal is only a bunch of abnormals hurdling together to find our most common traits, and common is not a term I would use to even compare my children.  If my own children, who came from the exact same parents, 6 times over, can be so distinct and different in personality, physical stature, and spirit, then normal doesn't exist amongst human beings.

What you may not know about dying by poison is this:

1.  When the side effects of a drug are clearly stated on your signed consent form, and then you call the on call doc at 9pm because you are hurdled over in pain, and he states, "that's not even possible," you will suddenly become the biggest beast on his list yet.

2.  When the on call physician calls you back after you hung up on him, you may answer the phone, but believe me, you can't talk.  He will eventually hear you trying to breath through snot and tears and give in to the inevitable--"Can I speak to your husband?"

3.  Hubby has your back more than ever now and it's time to get serious.  The on call "doc", which happens to be a resident, gets a load outta' hubby because this is a real life, "no one messes with my girl" situation.

4.  You are told to go to the ER every time.  No this isn't a fancy cancer center ER, it's the type that sees a bald, puking, sleep deprived, teary eyed cancer patient and says, "oh, you must've caught something from your kids."  You will look at them bewildered and numbly state, "no, I have cancer, and my children are all fine and well--thank you for inquiring."  Okay, you won't say thank you--those words won't be a part of your vocabulary anymore; you are, most certainly, a whole different being by now and shouldn't be held accountable for what these poisons are telling you.  At least she seemed stable, you'll think, to distract yourself from all the lies she told herself when she entered the room, which will make you feel all the more unstable, and before you're even treated, you will be begging to crawl back onto your own home and cry the night away instead of endure more cold and awkward situations.

5.  Taking the antidiarrheals they prescribe you will make you constipated.  But in attempt to rid your body of poison, you will continue to have the urge to rid your bowels of everything.  You will suffer the most excruciating pain--aside from labor--because the body can't simply stop trying to survive by rejecting poison.  If you can't poop it out, you may eventually begin puking it out.  Before you have even noticed it, you will have gone into mush bowels again, and you will have to make to dreadful decision of "butt or face to porcelain?"  Naturally, you will have failed at even making the decision before the results are in action, and you will find that your pants are soiled and there is an awful looking vomit on the floor in front of you--which strangely looks like fecal matter.  Then truth will reveal itself and you will find that the short moment of constipation pushed your bowels out your mouth, literally.

6.  Hubby will be dialing 9-1-1 again, because with 5 children asleep at midnight, he's not capable of leaving the house.  He will come into the bathroom while you are crawling from the weakness induced by chemo, malnourishment, and severe dehydration, and he will hear you wailing in agony for help but be unable to do anything about it.  He will see your missed vomits and declare that it is indeed "poop" coming out your mouth, and then yell at the paramedics to get here faster.  You will feel like death has to be imminent because another "10 minutes out", that you heard from the other end of the line, feels like it's just the slow lingering that happens prior to death.

7.  Hair loss will look ugly...  The hair doesn't fall out all at once.  It will actually take 1.5-2 weeks for it to start.  You will first notice it as a few extra strands that come out with brushing, and then one day, out of nowhere, you will be sitting with the children, laughing, and then naturally rub your hand through your hair, only to reveal a chunk of hair entangled in your fingers as you pull your hand away.  You will joke about it and then sneak away to the bathroom to see just how much more will fall out if you ran your fingers through it a bit more.  It will finally hit you as chunks of hair are laying in front of you on the counter sink--the first steps to losing your entire identity this year will be in action.  You will sob and lay against the counter, shower, or wall, and allow the heaving to come and go, for as long as it takes. You will not believe this quite yet, but it gets so much worse, and yes, you may lose more than your hair through this process.  Some self worth and confidence will feel lost, but try to imagine them being refined instead, pulled away for a long while in order for you to feel them stronger one day.  Also, you won't see this beautiful bald head if you're on chemotherapy long enough--which starts with Stage 3 cancer; instead, your head, in time, will turn into a blotchy mess, as though you already have aging spots all over your head.

8.  When your identity seems to be slipping away physically and mentally, you may feel like your husband isn't interested in you at all anymore.  Touch dissipates, intimacy is lost, and survival seems to be the only way to get through life.  If you are brave enough to ask if your "new" and "attractive" look is the cause, the lack of an answers will feel like an answer in and of itself.  You may then feel like you are nothing with out hair, skinny, and beauty.  That sucks.  Hopefully it's a lie, but actions are foretelling at times.  You will, therefore, feel like you are nothing without your beauty, and a whole new can of worms will be open and need working on for a long time now.

9.  There will be times early on when compassion and empathy are given to you, but after that initial shock wears off, people will stop inquiring and showing compassion.  Cling to those who do continually inquire and then relieve your burdens somehow because they are officially your guardian angels.  You will feel like you are dying, and reality says that you kinda' are--just enough to keep you hanging onto life--but you may hear words that minimize your experience from others who have no clue what cancer and chemo feel like.  In those moments you may feel abandoned by even the people who showed intense love and concern to start.  This is a huge heartbreak.

10.  The statistics you are given are probably not realistic.  Some cancer patients are told they have a 97 % chance of survival before they have even determined the stage of cancer you have--this is false hope.  Your cancer stage is critical when determining survival rate, and when you read scholarly journals you may find that the average rate of survival for advanced cancers are actually limited to 4-5 years if the treatment really worked.  in other cases, I have heard people say that their doctor said they have a 1% chance of survival when in reality they have a 50% chance.  Do your own research so you can prepare for the worst while still hoping for your miracle.

11.  Unless you ask, you will not get much help.  Now, try to be more proactive than me and ask for people to expect you not to ask for every thing you will need.  If you have children you will need countless hours of babysitting for all the appointments, scans, infusions, radiotherapy, surgery, etc.  When it comes to the house, inform someone you trust that you may want them to come on a scheduled day each week to assist with folding laundry, doing a deep cleaning of bathrooms, and even something as simple as prepping dinner would be heaven.  I haven't been proactive, and little did I know, but once you are in the thick of treatment, you will find it nearly impossible to muster up the courage to ask for help--chemo plays bad tricks on your mind, remember that.

While you will never know what it feels like to go through this horrendous process, unless you have walked it, it is wise to know what your friend or family member may be feeling so you can help them in ways that are quite simple--a visit, unexpected cleaning of the house, etc.  I really wish I had more of these experiences in my journey so far, but we are all walking different lives and my support system is burdened by their every day lives.  None of us have money, and most don't have the time to help out in the ways I need.  I pray that YOU, whoever you may be, have systems that relieves the everyday burdens from you because my burdens only increase.  It hurts so bad.

Lately, the children and I have used snapchat as a coping mechanism...enjoy our funny and adorable faces!

Dearest Husband....

Today was my last day of chemotherapy, for the unforeseeable future at least.  That's not to say I am "finished" with treatment, because I have many more infusions and treatments to go in order to ring that bell that most patients do at the end of radiation therapy.  I'm honestly not interested in ringing the silly bell--maybe for the sake of a smile on the baby's face, but not for me.

I've been thinking a lot about these coming days, these days when I may be able to declare that I am cancer free, yet strangely not in remission.  I was told early on, well the first day I met my oncology team, that "remission" was not a term that they used in my particular cancer.  They didn't give me a clear explanation, but it kinda' broke my heart when they stated their opinions.  Lately, my mind has wandered into the fact that I have just been through the most horrendous year of my life.  Every few weeks, if not every week, I have been placed in a chair, and if I'm lucky, I can get a bed when I ask for it.  The nurses have felt for three tiny bumps that lay below my skin on the left side of my upper chest, placed masks and sterile gloves on, so as to not contaminate the device they were about to stick a needle into.  The device they accessed every week is called a port--an access point for infusing dangerous drugs and even drawing my lab work from.  This port has been life saving, as my body decided to collapse it's beautiful healthy veins with each year that my undiagnosed health problems worsened.  The port is an amazing device, but dangerous as well--hence the gowning process that takes place when the nurses access it.  Attached to the port is a long catheter that is strung up over my collar bone and then weaved into the artery in my neck which leads straight into my heart--as a matter of fact, the end of the catheter is right at the entrance of my heart--you see why I call it a dangerous device as well?

After nine months of chemotherapy, the port was accessed today, and the blood flowed out of it perfectly.  The infusion begins with a simple mixture of dexamethasone, a steroid that reduces the chance of my body rejecting the medication, and zofran, an anti nausea medication.  Because this particular infusion is usually very harsh on the body, I am also asked to swallow a 72 hour acting anti nausea medication as well.  Once the pharmacy has mixed and approved the chemo I will get, which took 1.5 hours today, they are able to bring the bags of poison to my chair.  Because this is literally a poison, killing the good and bad cells in my body, the nurses are required to place a gown, mask, and gloves on in order to protect themselves from the bags.  None of the fluid within the IV bags touches these nurses, but because it is such a deadly risk, the nurses are required to take all precautions to protect themselves.

For this, I find strength and joy.  I have suffered the physical, mental, and spiritual side effects of being poisoned, cut open, pulled apart, and stitched back together over and over again.  I have had chemotherapy running through my veins, and I know the awful demons that come with such toxicity.  I can say with 100% certainty that anxiety, depression, and sometimes a level of psychosis follows as natural side effects of these drugs--is it frightening.  After one of my first infusions, I woke in the middle of the night, uncertain of what was happening in my life.  I paced my bedroom, in the dark, sobbed hysterically while holding my head as I did the basics of what we call "orienting" in nursing.  I repeated, out load, "I am Crystal, I just had a baby.  He is alive and beautiful.  Today is Friday November 18th--I just had chemotherapy.  On October 25th I was told that I HAVE CANCER.  I'm so afraid.....Oh God, please help me, I don't want to die."  I would then repeat that phrase as my mind went from complete chaos, confusion, uneasiness, and fear to a full and sound feeling of purpose and hope.  Sometimes it took minutes, but most times it took hours to gain a sense of self again so that I could tend to my newborn baby and allow my body to fight.  However, in the roughest months of physical and mental fight, my husband had to take over all the night routines with our baby....it was then that Gavin gained an endearing innate love for his Daddy while I laid idly by, heaving in sorrow because my  body hurt too much to even walk over to the crib and feed him.   The way these drugs cloud the mind is one of the most frightening things about chemotherapy--and by all means, I have known some grievous physical ailments attached to the process.  It is my prayer that I never have to watch my loved ones endure such a trial--it feels like the longest marathon when I haven't trained a single day for the event.

I was numb today, and almost on the verge of anger.  I'm tired, and when asked how I'm doing, that was my standard response, "I'm tired..."  It was hard to smile today, but I'm grateful that I allowed myself to simply be who I am in the moment that I was in.  My husband never told me I was being rude, he simply rubbed my back and his eyes would swell with tears when I was breaking.  He is the person I needed with me on this last "Red Devil" infusion.  I love him so much.

I stared at him many times as the medication dripped into me, robbing me of my physical energy while I sat by, as a spectator to my own demise, allowing the event to play out without intervention.  I guess two negatives can make a positive, as it does in math; when my body is dying, we kill it even more so that perhaps, just maybe, I can live!!!

As I stared at my beautiful husband, I wondered out loud why it feels like our story is ending as it just begun.  He smiled at me the little grin that speaks sorrow and understanding all at once.  I've always wanted to end as we started, having raised our children up to live good and honest lives; I believed that one day we would sit and enjoy the fruit of our labors, being all the more wise and happy after all the "dang's, uh-oh's, and sorry's".  I guess we never can see what our story looks like in the end, but I still have that same desire--to grow old and happy with the love of my life.  The irony of this all is that the man Steve has become through this trial is the man I want to cleave to and never ever let go of even more--there is a beauty in him that surpasses understanding; yet, will I have all those years my heart desires?  Or will they be had for another?

 I'll be honest...i don't want to die, and I am hopeful that I have more time.  However, there is always something in the back of my mind telling me to take today, live it expressing all the love I can towards my family, and don't expect the promise of tomorrow--just like you, I don't know if tomorrow will come.  It sounds like an easy principle to adapt to, but it has been one of the most challenging lessons I have ever learned, made harder by the face of reality.  Even I, who finds great joy in motherhood and family, have felt the pangs of what motherhood and family does to us.  The monotonous day in and out,  school and church responsibilities, temper tantrums, time outs, the piles of dirty laundry, dirty dishes, and dirty hands and feet seem to be endless--and yes, they weigh down a mother's spirit and drive.  Combine that with willing sleep deprivation as a night shift nurse because I wanted so dearly to be my children's mother in the day--every day--and you have a recipe for disaster, a ticking time bomb.  My reality before the cancer diagnosis was one of blind hope.  My reality now says that I may be told that the cancer is back, and with that comes the question--"do we continue to treat?"  While raising 5 of my children, current ages of 9 months to 14 years, I have the daily question of what will I do if the cancer comes back?  Yes, it is still a question--if you saw my husband cleaning up the floor after I puked fecal matter all over it, or consistently reminding me that all these physical ailments will take time to heal from while I cried and cried this year away, you would understand that the question I pose is one of dire need.  CANCER HURTS THE WHOLE FAMILY, but it is also a great teacher of deep love, sacrifice, and loyalty as well.  My husband has watched my body morph into something far from the dainty and petite little thing I have always been.  I have lost all of my hair, lashes, brows, have had hormone instability because of the hormone driven cancer I have which has caused added pounds, water weight, facial roundness, arthritis, and wobbling legs--I look like a sickly old lady, yet I am only 36 years old. I do believe with all of my heart that treating and fighting is always the first answer especially while raising children, but what will my heart tell me if nature continues to attack?  I hope I will fight with even more understanding and grace, but I will leave that for tomorrow--if tomorrow comes. 

For now, I leave you with the site that graced me this afternoon.  Steve brought me a ginormous cheeseburger that I ate slowly as the chemotherapy dripped into me.  He knows that the days following are usually filled with fatigue, a loss of appetite, tears, vomit, pain, and deep loneliness.  He, as all my chemo companions strive to do, was fueling me for the fight ahead.

My dearest Steve, I pray that I have come into your life for the better.  You have always told me how good I am, and I have always felt it genuinely from your heart.  In the last 4 years, you have worried about me.  There were times when we would be in the car, driving, and our conversation was halted because I had no recollection of past conversations that we apparently had.  I clearly recall you saying, "I'm really worried about you babe...", and deep inside I was really worried as well.  When I would tell you of the pressing need I had to get some scrapbooking done for these children, you would say, "I really hope that doesn't mean something..."  Without even recognizing it, we were living and talking to eachother based on spiritual promptings--how beautiful is that?  We have learned by the greatest and hardest teacher--experience.  We have learned how to temper our words, for they speak lies when the mind is angered, but beautiful truths when we are at peace.  Forgive me for being unkind in my words at times, I never meant to harm your beautiful spirit.  We have, through our deep and abiding love, created 6 amazing children--they are the pearls in our nest, the treasures in our quiver.  We, with broken hearts at such young and tender ages, laid our third born child to rest, as God taught us that He gives all things, and He takes all things; our role is to give back what He has entrusted to us, even if it means we will forever be changed and broken in ways we cannot put into words.  I admire your desire to place first things first as you initiate family prayers and scripture study.  It takes a heavy load off of me when you do these things;  I believe it instills a feeling of protection that the world cannot offer.  Thank you for not taking my deep grief offensively this past year.  Thank you for sobbing with me when we first brought Gavin home.  He laid between the two of us, swaddled tightly.  I laid on my right side, in the fetal position, grabbing tightly to your arms as you laid on your left side, facing me, and reaching your arms under our tiny babe and towards me.  We let everything out while Gavin slept perfectly still.  Our bodies both quivered in anguish and confusion.  Many "why's" were verbally asked and left unanswered.  That night, our first night home from the hospital after Gavin's traumatic birth, we cried ourselves to sleep, together.  We have always relied on each other for survival, and any period of time we have been apart has been the most trying and uneasy times in our lives.  You truly do make me a better person, as cheesy as it may sound.  Here's a good line, "You complete me!"  It's silly, and attached to a chick flick, but true.  I want to grow old with you, showing you how grateful I am for all the unconditional and deep love you have given me in just 9 months.  My beautiful husband, if we have this gift, let us not look back and question the hard times, it is of no use.  God has created the beauty hidden behind bodies that have been standing the test of time and sorrow; we are broken, physically and emotionally, but we are so alive and in love behind the bodies that have been tortured.  Thank you for all the sacrifices you have made so that we have a fighting chance to continue to raising our children together, side by side.  I'm finding that people have an attitude of invincibility when it comes to cancer....until someone you love even greater than yourself is afflicted with it.  It is only when cancer comes in and threatens to take your loved ones that you cease to believe that everyone survives and lives 20 plus years post cancer--which still places me at a very young age of 56.  Ideally, I will live a long life with you, but realistically we must prepare for whatever lies ahead.  Whatever it may be, please know I am beside you and the children at all times, heping in the fight to bring us all safely home.  I know you would say the same if you had to comfort me.  I love you Boy....your Princessa, forever

Making Milestones

My thinking has forever changed since being diagnosed with cancer.  For a long time through this journey I had felt that I have simply been a burden on my family.  For every breath that I have taken, I feel like my family is taking twice as many as we try to keep the morale up in our tiny, cluttered, and neglected home.  If there is anything that I would desire to tell all people about cancer and it's consequences, it would be this--DO NOT JUDGE.  Do not judge yourself, if you are facing treatment, do not judge each other, and definitely do not judge another family and how they are managing this extremely difficult and ugly time in life.  I have a household who has depended on me for a very long time now.  Even when I have stood in a place to help out financially, I still placed myself in a position to be the person who keeps everything together inside the home as well.

From an inside perspective, you probably don't need to be told much.  If you or anyone in your home has suffered through cancer, you know that all you will be doing for at least the next year is hanging on for your dear life--this includes adults and children alike--everyone is simply surviving, even if it's ugly.  There will rarely be time to do a thorough cleaning of any room, and if time miraculously comes, energy may be so low that accomplishing tasks, such as cleaning a kitchen and folding laundry will seem impossible.

From an outside perspective, just keep what the insiders know all too well in the front of your mind at all times when interacting with the family who is struggling through a cancer diagnosis--when walking into their home, look at the people, especially if you have no desire or intent to help in tidying the home (which I understand if you don't), just look into the eyes of the people who are suffering--their suffering is greater than you could ever comprehend, and their untidy home does not reflect who they are.  If anything their home reflects what they have chosen to focus on instead of the home, which would be each other, and that is a great and beautiful quality.

After living like strangers in our own lives for 9 months now, I am happy to say that I took advantage of my last day before my last Red Devil infusion to enjoy the children.

I was far from beautiful, as my baggy sweatpants and t-shirt hung off of me like I had just trudged myself out of bed.  I've given up on makeup and scarves or hats for the last several months--I have no energy for any of it at this point.

What I did get was the opportunity to witness Gavin's first "park" milestones...

We placed him in the swing for the first time in his little life!

There were moments when he looked content, and then moments when he looked like he would puke at any given moment!

His siblings were 100% involved in this milestone, either by pushing, swinging beside him, or swinging with him!

Let's not forget--kisses were involved as well!

Lydia made sure Gavin got his first bouncy spring ride!

And even though I was fluid overloaded, a condition no one can diagnose still, and I have been terrible at sticking with my medications, I had to document the day when I had enough energy to take my babies to the park for the first time in over a year....

The last few years of my life have been so hard and prevented me from doing basic Mommy tasks, like park visits.

Let us not forget, Lydia and Maya got the wish of their hearts today...short hair!

These girls are so lovely....

I am blessed to have had a beautiful and eventful day, tangibly loving my children with kisses, hugs, and hands through their hair.  I pray I have many more milestones to go....

Cleaving to the joy

I sit here tonight with questions constantly turning in my head.  I've always placed my trust and hope in my God, and even in times when I should have broken from the suffering and injustice that has been done to our little family. It recently became time for the kids to go on their 3rd annual trip to Pennsylvania this year with their grandparents, I didn't hesitate to send them because I knew that they have suffered along side of me, in fear, over the last bit of our life.  When I received picture updates and face time phone calls with them, I could see that they were indeed being carried, a gift they needed so deeply; since I was diagnosed with cancer on October 25th, 2016, they have had to pick themselves up in ways that most children don't experience at such young and tender ages.  A large part of the suffering I have endured has been because of this very detail--no child deserves to be forced to grow up before they are indeed "grown up."  As a mother, I have always second guessed what I demand of my children because I have a deep understanding of what it could do to a child when you pull away their innocence.  So then why?  Why would I be asked, as a mother, to watch them endure one of the most challenging lessons they could possibly face in their youth?

My greatest hope comes in the fact that I didn't ask them to endure any of this.  God did, and continues to ask it of them.  

Over ten years ago I sat in a dark quiet house and wept over the loss of my son.  Certainly, I thought, this would be a sacrifice worthy of being with him again--to gracefully accept that Heavenly Father knows better than I do, and has asked for His and my child back once again.   My heart wondered what it would do to his brothers at the time.  Connor was only 3 years old, but Shane was everything to him.  The nights following Shane's death, Connor would get a baby doll we once used as the Christmas child, and he wold wrap him in a blanket, call him Baby Shane, and hand the baby over to me so that somehow Mommy's tears would cease to fall.  Connor and Aiden were so resilient.  I am still overwhelmed with gratitude for having had the ability to watch two beautiful brother's give their sweet baby brother over to the Lord without much in the way of questioning as well.  

A decade has passed since that day.  Yet, in all we have been challenged with as a family, it has felt more like a century.  Coming into this diagnosis, my body and mind was already running weak from fighting unanswered questions to my health decline and living in an environment of constant change with our family.  In spite of all we attempted to do with our lives to bring in steadiness, we always felt we were thrown a curve ball and had been one step behind--blindsided by people we trusted when we engaged in employment and rental contracts.  The lack of follow through with the parties we worked with caused a great measure of frustration in our minds which can so easily lead to self doubt and criticism.  For as long as I can recall, I tried ever so hard to avoid engaging in any thought that would claim that we did this to ourselves.  I simply pushed on.  When the people we worked with on housing contracts broke their end of the lease, we had to pick ourselves up after attempting to advocate for ourselves and just move on.  As parents we always told the kids that there has to be a bigger reason for it all and that we would make the best of the new place we would be living in.  

Unfortunately, similar experiences plagued us in the work force.  Only a year ago, I was employed to care for a severely disabled young woman in her home by a nursing hospice and home health agency.  I was pregnant with our 6th child this time last year when I was working for the agency.  I was a good nurse and did more than just physically care for this woman--I gave her a piece of my heart.  We became very good friends.  Out of nowhere, on a hot summer day in August of last year, as I sat with my twin sister and mother in my childhood home, I received a voice mail from my employer.  I couldn't help but place the phone down in utter shock after listening to the message.  The agency claimed that I could not come into work that night because they found another nurse to work my regularly scheduled shift because i was "pregnant" and they weren't certain if I would be coming back after the baby was born anyhow.  My first thought was, "this sounds a lot like discrimination."  I put my head in my hands and wept.  My sister and mom tried to comfort me in stating that perhaps it was a misunderstanding; by all means, it sounds like it should have been because that is  a heavy thing to do in the times we live in.  However, after clarification, it was clear that it wasn't a mistake--I was fired from my job because I was pregnant even though it was clear that I was still capable of caring for this young woman in excellence.  

I guess it takes a series of events to tear someone like me apart, because through all of the seemingly unjust things that have come our way, I still chose to smile and push on.  

I knew something more was coming last August.  I had prepared myself through this last and dreadful pregnancy for something to drop like a bomb onto our lap.  This preparation came in large part because of a series of dreams I had in the early stages of the pregnancy.  In one of the dreams, I was about to deliver my baby, but something was going wrong.  I recall laying on a hospital bed, feeling like I was walking a very thin line between life and death.  An oxygen mask was placed on me and I was told not to move from the position I was in.  The doctor informed me that the baby had to come now.  I laid there wondering how I would find the strength to deliver a baby; I felt completely worn thin and weak.  While laying there, I could feel myself drift between this mortal life that we all know and have expectations of, and the life that lies ahead of us, a life that human beings are always questioning.  It was as though my spirit was brought to simply observe what was happening on the other side of the veil--the resting place for all those who have died.  I saw two beautiful women in a room, working on a white dress. They spoke to each other about me.  One woman said, "Is it her time?" and the woman who had been placed in charge of preparing my dress answered with, "Not yet....but soon".  

I couldn't disregard this dream, but I also couldn't deny myself the rest that I needed to continue in giving life to this child that was within me.  Therefore, I used all my might to carry this little innocent child through the hardest pregnancy I have ever experienced.  I was on many medications including thyroid replacements for an ever failing metabolism (which we now know was fueling a cancer's growth and probably getting very tired from fighting what to fuel for years now--cancer and/or the body.)  The fluid balance in my body had been off for about 4 years now, leading me to be completely dependent on diuretics to mobilize the fluid I would take in.  My body wanted to place the fluid in tissues and organs that it didn't belong in instead of allowing it to run through my body for nourishment and hydration, and then out as a waste product in the end.  The hives I had been dealing with since 2011 continued through the pregnancy, as did the respiratory infections that had taken a turn for the worse in the last 2.5 years.  I found myself being treated for recurring respiratory infections through the summer months, even when no one in my house was sick except for me.  Obviously there was a bigger culprit than the current unknown to my failing health.  

Sadly, my failing health led to the weakening and discouragement of my spirit.  By the time I went into "labor" with our sweet 6th child, I was so tired of fighting for myself that I had pretty much given up on fighting all together.  It is a peculiar thing to be so strong and capable for years, through tragedy and broken hearts, and then to finally see yourself falling apart; it doesn't look like falling apart, it simply looks like acceptance of the unknown.  I still placed a smile on my face, but instead of telling the doctors that something feels wrong, I went with their scripted responses.  At one time, I was on fire, demanding lab tests and diagnostic studies be done, but now, I just went with the flow, almost to my demise.  My husband found the lump in my right breast when I was 6 months pregnant.  We both looked at each other on the night he found it and innately knew, without saying a word, that something was terribly wrong, even bigger than we had expected prior.  Silently, we continued living.  I failed to mention the lump to my doctor, and when I did, I was already 36 weeks along in the pregnancy, and get this--the lump had grown by my personal assessment.

Now, after almost 9 months of treatment for my stage 3 breast cancer, I am a woman who doesn't recognize herself in physical or emotional form.  For the sake of life and love, I place a smile on my face, though there have been hundreds of days when all I could do was cry.  I have never known a sadness so deep.  It is a sadness that comes from understanding that in this journey, I have a 100% knowledge that my children have to suffer and know pain far beyond their years.  I know grief too well, and I would do anything to shield them from the heartaches I have known, but now here they are, being forced to come face to face with a frightening grief.  At the age of diagnosis, my children were 13, 11, 7, 6, and 1 day old.  For the most part, I can say they have coped the best amongst all of us.  But now, after 9 months of this intense and deep suffering, I am seeing the depth of their pain.  Their whole worlds have been turned upside down, and the daily wanderings of their minds tells me to what depth they understand life already.

When I am with my girls, there is a conversation thread that picks up on a daily basis regarding me, the cancer, and if I will be around when they start dating, get married, and have children.  They want to know that I will be here, but none of us have been promised that.  The boys have released their grief in different ways--even a simple shift in how they seem to be handling day to day changes cues me into how they are doing.  However, in the last week, I have witnessed both of the boys emotionally breaking a wall as they share with me all of the worries that run through their beautiful minds.  Tonight, I held my son as we both wept.  As tears rolled off his face, I tucked him into my arms and rested his head upon my shoulder and let him cry all of his worries onto me.  I kissed him and thanked him for being so open with me, then I assured him of my desire to work on all of his concerns.  

After placing the kids in bed, I came into the living room and cried tears of sadness over having to watch such tender children suffer, with very little that I can do to resolve it.  My greatest desire, for me, is to be intimately involved in my children's lives, minds, decisions, and hearts--I pray they can feel and trust that whether I am here or walking beside them beyond the veil.  My greatest desire for my children is to find respite in Their Savior, Jesus Christ, because it will be through Him that they will see clearly and with an understanding of life that motivates actions of love and faith, even in tragedy and pain. 

I don't fully understand why the Lord continues to challenge us.  My hope is to find those answers as we patiently experience life, and to continue in childlike love so that joy and love has no limitation in blessings for us who have suffered so intensely.

For now, I hope these children will think back upon the good times they have, even amidst some of the darkest hours that our family must endure.  For now, the greatest amount of suffering is upon my shoulders....I hope it doesn't compound on theirs one day....

Connor and Hannah...

Aiden and Eden

Lydia and Maya

Maya, Lucy, Lydia, and Aunt Sara

Maya, Lucy, Lydia, and Hyrum

Connor

Aiden and Hyrum

Lydia and Maya

My children standing at their baby brother's grave in Lititz Pennsylvania

This is Steve and Gavin, as Gavin got use to being a single child over the last month...

Tired baby...

Clean baby....

Maya's Tears

MY CHILDREN ARE HOME!!!

After 5 weeks without them this summer, Connor , Aiden, Lydia, and Maya are home from our beloved Pennsylvania!

I had expected them to be much later and had escaped to the bathroom mid afternoon, but by the time I walked out into the hallway, I saw a glimpse of my dear Aiden walking into his room.  I gasped with disbelief and then said, "YOU'RE HOME!!!!"

Three of my babies were in the hallway.  AIden, Lydia, and Maya had no choice but to be swept into my arms and given very tight and long squeezes for what felt like an eternity, to them at least.  They all looked at me with smiles of innocence--complete innocence.  They were probably thinking, "I'm going to suffocate Mom!!!!"  They don't know what it feels like to be a mother, a very young mother, facing her own mortality as I raise these 5 very young babies.

After a long and loud afternoon of catching up, we were all famished and ready for some food.  Dad willingly made the trek out with Steve to gather some pizza for the family.  Mom stayed back to assist with bathing Gavin and catching up a bit--which was such a delight.  I have a deep love and respect for my in laws, they have become some of the dearest people to me over the years.

At days end, I went into my daughters room.  The girls were both laying there, ready to nod off.  Actually, Lydia had declared an hour earlier that she was getting ready for bed, all without warning anyone that she was tired!  Mom has said that Stephen use to put himself to bed at night--she takes after her father--a lovely trait to have!

When it came time to say Maya's prayer, she looked at me and said, "Mom why didn't you come with us to celebrate my birthday when we were here?"  I had no clue what she was talking about--I thought we did celebrate her birthday together.  I asked her what she meant.  She said, "When we went to the place you went to with Lydia for her field trip for my Birthday, you didn't come...why?  I really wanted you there," as tears swelled up in her eyes.  She continued, "Because Mom, what if you aren't here for my next Birthday?"  NOOOOO, I thought.....why didn't I go to this trip that I can't even recall, to celebrate my baby's Birthday with her?  Because the chemotherapy has wiped some very important short term memories from me, called chemo brain, a literal thing that is happening to hundreds of thousands of people everywhere on chemo, I had to recall something to bring her comfort...and this is what came to my mind....

I told her that an Apostle of the Lord came to visit me while she was gone, and he told me something very particular that I wanted to tell her right now.  He looked at me and said, "Yesterday is gone, there is nothing we can do about that.  Tomorrow isn't even promised, so still that, we can do nothing about.  The only thing you can do is live today, however you must to survive.  There is no need to worry about the past, and no need to be anxious over how the future will turn out.  Heavenly Father knows each and everyone of us and the days we will live, so today is what you must live in...and make it count!"

I know she is far too young to fully understand, and at times I am far too heartbroken to live by that guidance...but I try.  I pray it will somehow be a comfort to look back and hear those words.  It is my hope that I will have many more Birthday's with all of the children, but if I don't, I told her, "We need to live and love as much as we can today, so that if any of us are gone tomorrow, we will have nothing but good memories to hold on to."  Realistically, we may still have hard days, hard communication patterns, and challenging experiences that may make a day feel sad and almost despair like for us all, but if we are trying, God will surely see the actions we have made with the hearts we have, and recompense the remainder for our good.

Little Maya...listen to the prophets words and heed them ever so wisely as you walk about this life.  Have peace in today, as we did when your little freckled face lay perfectly on my shoulder and we cuddled for hours upon your arrival talking about all of the characters in your new Lego set.  Have peace, and know that I love you forever, and whether I am here or not, you can hear me whispering those words of comfort to you, for I am your mother!  You will always be my daughter, and God certainly knows that I would do anything to be near you, to raise you as a mother of physical appearance and frailty, or as a mother in spiritual light and whisperings.

Maya's tears were gone before her prayer was said, the lights were turned out, and her sweet body went into a deep slumber of healing and dreams.

I love you dear little one...we had a beautiful day...

The Real Face of Me Fighting Cancer

Today is Saturday July 7th, 2017.  Today was hard.

I desire to write about the beautiful things surrounding the birth of my son of October 24, 2016, because naturally, I am very positive and optimistic, and always reflecting on the past good things which have come.  On rare occasion, I have complained in my writings, and that would give a false premise and understanding to life if i didn't.  I do not regret keeping most hard times from public view, it is only right--as they come from many conditions and apply to many characters which I would never defame.  But today, I will tell you a little about the hard and ugly experiences of me.

If you have followed me you know my blog has help for many years, with a short disruption this year in particular.  The honest explanation for it comes form 5 years of decline and an ultimate reality that was revealed to me on October 25th, 2016.

I had just given birth to my son, traumatically, on October 24th, 2016 at 9:59 am after having been in labor with him since Sunday, October 23 at 2:30 am.  I hadn't slept well at all through the week prior, as I had just laid down to google the next pair of "fashionable" glasses I would purchase from Zenni.  Ridiculous right?  I'm 38 weeks along with my 6th child, I assumed to wake the next morning at 8am to throw on a dress and try to drag my tired self to church for the families sake, but instead a kicking baby, a long hard pregnancy, trips to the bathroom that night to throw up AGAIN, and anxiety about delivering weighed heavily on my mind.  I was merely distracting.  How odd that I was distracting myself on a site that allows one to see better, as I was at that time blind to what I was and had been carrying for a very very long time.

I have cancer.

I have had cancer for many long years according to the doctors, and now I know, according to the biopsies in my lab file.  As of now, I have been doing chemotherapy for 8 months.  To say I am tired would be a lie.  I am barely hanging on for life.  How can someone who is supposed to be fighting be barely hanging on for life?  Shouldn't this chemotherapy be helping me?  Yes, it should.  Instead, it is poisoning me, literally, to the point of near death, and then as soon as I feel like life is coming to sweep me away into some form of aggressive healing, I am poisoned again.

I watched a movie lately where a woman was being secretly poisoned by a neighbor.  My mouth dropped open in disbelief as the woman's beautiful youthful appearance took on a deathlike, sleep deprived, and ill countenance.  Her soft warm skin tones and beautiful vibrant smile turned pale with dark black circles under her eyes, blue sickly lips, and distress in every glance.  Her luscious chocolate shoulder length hair began to fall out in clumps, and she wore pajamas all the time--too weak to dress for public approval. Everyone assumed a little rest would help, as she just faced a major life event, moving, but she was severely ill and dying every second that the poison was in her.  The movie ended and I thought, "How horribly sad and frightening."

Then it hit me, as though my heart was a brick stuck in my stomach.  I was that very reflection that began 8 long months ago.

It doesn't seem fair that a woman, whom had just delivered a baby, would be required to leave her hospital room the very next day to take a drive to the cancer center 5 minutes from the labor and delivery ward, to have her first "oncology" appointment.  I could hardly walk after pushing a tiny babe from my body, famished, still without an ounce of sleep since Friday October 20, 2016.  But, the process of healing after delivering my baby was out of the question.....my cancer came too aggressively and needed to be treated as soon as possible.  Details of the cancer type and plan will be revealed as I go through this healing journey to tell you of my deepest sorrows coupled with my joys.

Do you realize in that in Asia, post partum mothers are confined, or allowed to heal, for 40 days.  40 days of rest and bonding with her new infant child while the mother's needs are accounted for so that she may become whole again.

In India, the culture focuses on MaharishiVedic Medicine, MVM, where a mother is placed on a rest, massage, and nourishment program that facilitates the movement from complete chaos at delivery, to healing for the mother while the assisted care of the baby is turned to families, yet bonding with the baby is still a part of the mother's care.

Why, in western society do we tell mothers to resume normal activity at home once you are there--without limitations to household responsibilities--laundry, dishes. tidiness in the home, meals for the family, and if you haven't prepped freezer meals then you may be out of luck.  Honestly, I hate freezer meals,  Life simply continues on--especially for the middle class America who rely on every penny to survive.  Mom, instead of caring for herself, hears the baby cry every night, feeds him or her, tries to rest some more but is wakened 2 hours from the start of the last feed to do it all again, if she is lucky enough at that.  As soon as morning comes, laundry dishes and school schedules return for the children. Mommy barely puts on last nights pajamas, skips the bathroom to even pee, and then ends up at the cradle, because baby comes first.

What happens to Mommy when Mommy comes last--because let's be honest--every shower I take as a mother has been 90% of the time, at night.  I can't even brush my teeth or get a glass of water before the baby needs to eat.  Therefore, I am left famished, tired, and a bit resentful after about the third child in his exact same routine.  I can't fully blame anyone, but the US demands the standard of living we have embraced--GO, GO, GO, and try to be perfect as you do.

8 months and 14 days ago I was required to do even more than the American woman is required to do for her post partum recovery.  I was placed on a schedule on October 26th that began a great unravelling of me--and no, there was no time to start a recovery from the pregnancy which has been hard enough, nor the delivery, which has left me with PTSD.

I will begin to recall the ugly and good things that have happened since in the coming months.

Today, I show you to true face of me suffering with cancer and treatment 8 and 1/2 months after delivering my baby.  I still have not healed from delivering him.

This week was ugly.  I have slept 14 hours since Monday.  Some of those nights I tried to sleep but was running to the porcelain throne every few hours to lose the contents of a tummy that had only eaten bits and pieces of food this week.  Sleep was replaced by tears and vomit, and endless prayers.  As I moved into Wednesday, I knew I needed a nap, and it came for 2 hours...waking to a crying baby who was well aware that I was not hearing his screaming, as he was abnormally hyperventilating.  I slept through his waking voice out of mere exhaustion.

Today, after a week of not sleeping, crying in my bed while everyone else slumbered, faking a smile as I cared for Gavin, doing the bare basic things to survive, like wear my pajamas all day (as I have every day of this journey) , and feed and play with the baby.  It was humbling to fold a few pieces of laundry, feel short of breath and panicked, place my head into my hands and sob because of how far I feel I've fallen from the health I have only dreamt of years ago, and then to look up and see my baby put the largest smile on my face through tears as I saw that he thought that my tears were hilarious!  He watched them drip onto my sweatshirt, and then his eyes began to swell with tears as he hysterically laughed at our condition--all because when I looked at him, I chose to smile instead of frown through the weeping.  How much of an impact that made....for both of us.  I could feel happy endorphins start to flood my brain, all because of the shape of my lips--incredible.


This week I screamed, "Please just try to understand me" as I sobbed, I begged for mercy from My Father, I stoped eating most everything because I was too tired and breathless to make anything to eat--thank God I was given a hot chicken and salad from my friend Melanie, unexpectedly, because a handful of that meat placed in my mouth each day, almost ravenously, was enough for warmth to replace the shivering that began to become a side effect of ill self care.

In the end, I laughed with my sweet sisters and Nonna, as reaching out to them in conversation was the only thing I could consider to do to relieve the pain--physical, mental, and spiritual.  Never stop reaching out is my piece of advice to all people suffering the depths of affliction that feels like hells mighty mouth opened against you.  Especially, never stop reaching out to our Father in Heaven who knows all of our needs, day by day, and who even numbers our days as we live out our mortal lives here.

I may feel like this is the end, but I must remind myself that at the end of my taxol and abraxane chemotherapy, I wept in physical pain that wouldn't be relieved by pharmacological means.  My bones felt as though they had been crushed all the way up my legs and into my hips.  I never imagined a life without the pain again.  My husband wisely told me, as I laid weeping, 'it will simply take time....give it time".  I was angry when he said that, and now I know better.  It did take time for most of those pains to pass, while only some remain, and I can handle that.  Here, at the end of Adrimyacin and Cytoxan, known as the red devil, I am feeling my heart is failing me--as little things, such as walking with my very small toddler feels like death.  I am nearing the end...it will simply take time for my body to recover from a year of torture, where every cell in my body is being killed, turned over, and hopefully restored to a newness of hope and health.

Someday, health will return, it will simply take time....but tonight, this is the face of me, fighting with cancer, hanging on for dear life.