Ring That Bell

So I debated doing away with any more posts documenting my breast cancer craziness cause I lost count of how many times this post was journaled then disappeared on me, quite frustrating and heats ones temper up pretty quickly after you go to all that work and take the time to sit down and put it all into words, not sure if it's my internet service, (great possibility) or the program I use or the devil saying no one needs to hear anything you have to say and your God surely don't need anymore credit or...….but....after someone wondered if I'm going to finish my story, and me needing to document for my own remembering and giving thanks for what I've come through I decided to keep posting even if it's weeks or months since the posts events, so here I am, back, and ready to try this again. I made a "my space" in our bedroom. A place where I can open my lap top and grab a few minutes here and there, of quiet and peace, through out the day, and write a line or two, or a place to meditate and pray, to reboot. It was hubby's suggestion, really, I was fretting to him one day after he enquired to my well being, that I NEED to write, I said it's been weeks and there's all this stuff going through my head and updates I'd like to document, but I just feel all this "other stuff" responsibilities, looking at me that needs my attention, or if I just go ahead and sit down to take some time, there's a 6 year old that has "important" stories, and needs mom time, and I can't hate her for that, God knows she's had to take the back burner more often than not through all this, and, well, just general life interruptions. Anyway, his suggestion was to make a place in our bedroom, in the little offset sitting area on the front side, or so it was created to be at some point, in the almost 8 years we've lived here it's mostly been a catch all/storage/baby room, anyway, he suggested putting something together in that area, where, I could get away and shut the door a bit here and there, I love that he recognized my need for some sanity saving time, or maybe it was the rest of the households sanity he was thinking of saving, yikes!! either way, I have been "creating" my space there, and having fun designing it and choosing a few pieces of furniture and some pops of color and it's been so fun to be doing something fresh and exciting that doesn't require an overload of info and brain frying with appointments and more meds and needles etc. but kind of feels like I'm a normal human being, so anyway, it's a work in progress.
The next paragraph gives you a little idea how long ago I started this post, after having it disappear to many times to count...…
Cannot believe as I'm writing this, that Miss Ava is already on the count down to starting back to school into first grade!! 19 more days, she's over the moon excited to be going back and to see her friends!! me, not so much!! makes me want to sit down and sob buckets, actually!! literally feel like I've missed out on an entire summer with her, with my family in general, and just slept and medicated and ran to appointments, and now here it is, time to be back in school again. But, am also thankful, as I write this, that I am on the countdown to the end of this cancer mess!! Can almost not grasp the reality of that, feels a bit surreal, also feels a bit terrifying, like, how am I gonna be able to function on my own with out my network of safety in my medical team, and, what if I miss something, or, what about this twinge, and that ache, and this odd feeling here and there or...…………….....………...small update, Miss Ava is almost to her first marking period in first grade and she is doing well and loving every second of it, even the 6:15 A.M. bus pick up she does super well with!!
 May 30, 2019 Chemo treatment #12 THE FINAL CHEMO TREATMENT for mom, THE LAST DAY OF KINDERGARTEN for Ava!!!!!!!!!!!!!!!!! So, today was a high excitement day, co-parented with a lot of mixed emotions. I was so super excited to be headed to my last chemo session, but, also torn because today was also Ava's last day of kindergarten, along with her kindergarten graduation ceremony!!Thankfully, she was ok with, and thrilled, to have her big sister Em and cousin Kate attend her ceremony and pick her up. They made her day special with lunch out together and dessert at Sweet Frog too, and Aunt Jess joined them for part of the time also, making it even more special!! I woke up super early a basket case of nerves, I was wound tight knowing it was my last chemo, and so excited for it, yet, I still felt like an emotional mess. Glen, dear man, I think sensed my turmoil, and pulled me close before work and prayed for a good day, and for it to be the last of the last of these appointments forever, it was sweet, and had the calming effect I needed!! I had my own care team, in addition to my medical team today, seeing me through this, cheering me on, my dear Miriam was my chauffer, and my dear Susan met us there, both taking turns sitting with me through the wait on bloodwork, and examination, and infusion. Susan arrived with a beautiful scalloped metal mint colored bucket surrounded with greenery and filled to the max with 72 pink roses!!!!! it was absolutely stunning, and the envy of everyone there, including the staff!! We gave a few away, I should have had my head on straight and handed 1 to each of my care team, though some of the areas have restrictions on fresh flowers, I did give one to Marcy, one of my favoritest nurses, she was having a crappy day after finding out a patient had passed, and I just wanted to hug it all away, these gals are amazing, seeing and dealing with all the ugliness of cancer, day after day, and seeing what it does to their patients, they are still always encouraging and caring and truly want the best for each of us, and let us know that often, I never felt like I was a bother or just another "thing" on their list of stuff to get done to get to the end of the day and a paycheck. Susan's sweet Jack gave her a message for me, he said, tell Nettie, PMA!!! Positive. Mental. Attitude!! :) He's the best, I needed those words of encouragement too, and the coolest water bottle mister fan he picked out for my trip to the beach, to add to the beautiful aqua back pack from his mama!! My bloodwork showed my liver levels a bit elevated and my iron a bit on the anemic side, but neither were at levels that gave them to much concern and the iron wasn't low enough that they required shots again so they were still over all pleased with it. My care team and the office staff was thrilled with the big bag of home made chocolate and oatmeal whoopis I took in for them, a few were like, can I pocket a few for later and my family at home!!?? :) It felt like such a small token for all they have done and been for me, but I was glad to make there day a little bit!! Once my last chemo infusion was done Nurse Stacy came around with a signed by Dr. Lee 8X10 Breast Cancer Treatment Award certificate. I can hardly describe my feeling when she handed that to me with a hug, I felt like I had just earned my college degree or some Olympic medal!!! I mean come on, a 44 year old woman getting teary and loving the feeling of a piece of paper stating you've completed your treatment, but, honestly, besides walking my son through treatment than saying goodbye, I'm pretty sure this was the 2nd hardest thing I've ever done, and to be recognized that you are a champion was pretty powerful and meant the world, especially after so many days of wondering if I would actually make it through!! Ava was thrilled when I got home cause she had received her own certificate from kindergarten graduation and blue ribbon for behavior and kindness. After I was de-accessed from all my IV's and meds I got hugs all around from the infusion care team and some of the sweetest most precious nurses ever, and on my way out I got to ring the celebratory bell, announcing to all that this part of the breast cancer race was over!! It was an awkward, yet elated, yet almost embarrassing, yet glorious feeling ever!! but, I felt so bad feeling so gloriously happy when there was at least 8-10 pairs of eyes looking at me, folks that were still hooked up to meds and in the throws of this nightmare yet, while I was dancing, so over joyed to be done, but, they were all so excited for me and I think it honestly gave them a boost of courage and energy to keep doing the next thing to get passed the hard stuff and on the way to the bell ringer being them!! While we were getting pictures together with my beautiful bouquet of roses out in the office waiting area and saying goodbye and hugging the staff we heard the bell ring loudly again and pretty soon a sweet little black lady came out, all by herself, I said, was that you that just rang the bell?? she smiled and said yes it was!! So I hugged her and said congrats, I'm so happy for you, that's awesome!! she said, I'm so glad it's over, but girl, your blessed, you must be pretty special, you have a team! I said, yes I am very blessed with an awesome support group, she hugged us again and was a bit teary, I shared some of my roses with her and wished her well, but my heart broke as she walked away, it's a hard fight to battle as it is, let alone doing it all alone, it made me so grateful for everyone that has held me up through this whole terrifying roller coaster. After we left the Cancer center we went to Duke's for a celebratory lunch. Susan carried the roses in with us as it was way to hot out to leave them safely in the car, but they were so big they needed a table of their own which then caused heads to run and many to gasp and stop an exclaim at the sheer beauty of them, then ask if something special was going on, and once explained that we were celebrating end of chemo treatment and then catching a glimpse of the bald headed woman they would light up and offer congrats and encouragement. There was a young lady eating by herself and she kept glancing back at us and after awhile a waitress came over and handed me a drink and said this is a gift from the young lady over there!! It was so sweet of her and made me more aware of reaching out and doing random acts of kindness to others when were out and about. When she went to leave, she stopped by the table and offered her congrats and I gave her a rose and wished her well. We left a couple roses on the table for our waitress and then called it a day. I came home flying high yet exhausted, and couldn't believe how weightless I felt, I told one of my people that I must have been more tense and worked up through all this then I thought, cause suddenly the whole earth felt like a new place and everything around me a bit brighter and more amazing.
May 31, 2019 The celebration feeling is still going strong today, I woke up with a lite hearted, it's gonna be a great day type of feeling. Later in the day a gorgeous bouquet arrived  from my parents and a beautiful plant from the church. This evening we went out to Red Robin with Brandon's and my Bro. Mar and his sweet family. And when I walked into the office I got a great surprise, my orchid gifted to me a few years ago on Devin's death anniversary from a dear friend, Andrea Weaver, was blooming so beautifully, it's been forever since it bloomed, made me smile and think surprise celebration blooms from heaven was pretty awesome too!!
June 1, 2019 This afternoon we attended the graduation party of Miriam's Taylor. My dear friend Karen who knows all about getting through this disease also, knitted and gifted me a beautiful prayer shawl, it's special to think of all the prayers she whispered on my behalf as she created it, makes me realize all over where I'd be if not for the prayers of my people, so special.
GOD IS IN HER, SHE WILL NOT FALL!!!!!!!!!

This Mornings Word.....Right On Time 13 Years Later

It always catches me off guard, even 13 years later......i think it’s because i try an not think of it overly much till then, but then fall hits, and dreary days become more frequent, and all the ugly feels start creeping in and what had been a celebration month 10 years into marriage became one of trauma and goodbyes and aching sadness and suffering and now as October and fall arrives i feel myself becoming someone I don’t like and my family, especially my hubby gets the brunt of my snappiness and grumpy’s, and i know it’s hard for him to cause i can tell in many little areas, and he pours himself into his work overly hard cause that’s his escape and his way of keeping his mind occupied but that doesn’t excuse my uglies.......i used to look forward to, not fall and dreary so much, as celebrating our anniversary, now when October arrives it seems every year the sound of the memories of our day and the feelings become harder to remember and grasp and instead the crushing feeling of suffocating in numbness and pure exhaustion of the fight of an ugly disease and watching your child become helplessly riddled by it and the sounds of labored breathing and last words and i love your and feelings of last hugs and little boy hand squeezes and impish dark eyed grins and sleepy snuggles and touches crowd all else out and even the smells of meds and oxygen and sterile-ness slaps you in the face and all you can focus on is desperately trying convince hubby and conjur up a way to run far and immerse deeply in an adventure in the name of celebrating your marriage and togetherness to try and forget it all and focus on happy and just getting through the next day to hurry back to bed to greet then the next day frustrated and putting in time to try and rush through to the week after, then reboot, lift up your head, breathe deep and sigh, yet another year we got through it......this word from one of my favorite pastors this morning was for me.......today is a new day, a bit dreary still, but a new day.....”i could be in a sour state of mind” (and sadly to often i choose sour) but, after all that, I’m still standing, after all that, God still got me, He’s still faithful.....as the hard anniversary approaches yet again I’m choosing every second to choose trust and say God got me through, He will again........

But....For God.....

October 2...…….thirteen years ago today I was sitting in a stale waiting room on a cold square pathetically uncomfortable vinyl chair, my arms wrapped around the bone weary and thin diseased body of my 5 year old Devin, holding him, snuggling him, trying to stay positive and hopeful and keep smiling and not give into the terror of what could be, or maybe already was, as we waited for yet another radiation treatment for the cancer that returned with a vengeance. Devin was weak and aching, yet, resigned to do the next step, but, didn't move far from my lap if he could at all help it!! My mama was with me for the day, being a moral support for me and a distraction for Devin. As we waited for our turn to be called back to the radiation unit, we noticed that security around the area inside and out, tightened up and there was a sympathetic and saddened, yet, urgent look on emergency personnel and nurses faces as they rushed to the back outside entrances where ambulances were silently pulling in, and the eerie sound of medical choppers were landing. As we all sat silently breathing prayers for whoever was involved in whatever trauma was going on and our hearts going out to whoever's day wasn't turning out as they'd hoped we started noticing medical people ushering in Amish folk with dazed and numb expressions, and glancing outside there was more gathering and milling on the side walks, with security and law enforcement officers standing far enough away for them to have privacy, but close enough to deter any un-wanted, whether it be media or curious onlookers. About the time we thought we couldn't stand the wondering what happened anymore, the entire waiting room occupant body all gasped in horror, then fell deathly silent as the TV blared the breaking news of unimaginable proportions, a neighboring man to an Amish school house broke into their morning classes and heartlessly took the lives and caused severe injuries to 10 Amish girls...…...my mind reeled, I hugged my lil cancer ridden son tighter and wept for what these poor families were facing. The glassed over blank eyes and solemn dejected faces and robotic motions of the girls loved ones and classmates hanging around the hospital corridors and sidewalks all made sense now. I wanted to go to every mother and hug her tight and try and offer comfort but there was none to give, it was all so horrific and fresh and unbelievably other worldly, but the terror and angst on their faces was so devastatingly haunting. My heart ached for them, as they entered the waiting room looking for a seat to take the load off shaky jellied legs, only to hurry back out as the scene and news caster on tv replayed the horror over and over. The thought of what I was watching my Devin go through and deal with I found to be so unbearably exhausting and extremely trying and heartbreaking, and yet as I pondered how these mama's were feeling I couldn't begin to imagine. How do you recover from such horror and violation??!! How do you ever get what horrendous actions you just witnessed out of your mind, how do you move on, how do you trust again, how do you forgive…..and when I thought of the mama's having to bury their daughter's, their healthy, vibrant, active daughter's for the senseless acts of another selfish human, I couldn't breathe.....I knew it was a very real possibility that I could be the mama in the very near future standing by a grave, but, I also knew my son had been fighting for his life for 14 long months and that there was nothing another soul did to put him in this situation, this was life with cancer, a disease, not another human choosing to inflict ugliness and terror..... As hard as it is to walk the unwanted grief road, as hard as it is to wrap my mind around not hearing that impish giggle or I love you mom one more time, as hard as it is each year to face another season of fall, as hard as it is to make yourself put one foot in front of the other to get through that first day after the last breath, as hard as it is to choose every. single. day. to move on, as hard as it is to think, we not only made it through the first year in tact, but are now on our thirteenth year without our Devin......as brutally hard as that all is...….. I CANNOT IMAGINE being the mama of one of these dear girls...… my heart still aches for them, for the girls that survived, and the flash backs and PTSD their mama's may have to walk their daughter's through, even 13 years later, for the work of having to choose everyday, for not only themselves, but helping their girls to choose forgiveness, for those that may have physical disabilities to live and deal with as a reminder every day.....no mama ever wants to have to stand by their child's grave, but, especially in this way, I'm so thankful for my faith and knowing these mama's have their faith I know without a doubt this is how they got through the unimaginable horror, this is how they got from that last breath, to 13 years, their faith, this is what gives them the strength to go on knowing because of their faith and God's promises, their tragedy will be turned into eternal rejoicing and celebration some day when they're reunited. One thing I know now, whether disease or disaster, a mama's grief is like no other, there is no definition, no description, no remedy or cure, just raw, aching, heart ripped out and shredded to ribbons bloody grief.  That day 13 years ago was brightened a bit when we got to meet up with my dear Uncle Dan for lunch while we were there, he was such a big support and despite the pall of somberness cast over our day at the breaking news, he always had a way of bringing laughter and encouragement, he to is now gone from our lives from this ugly cancer disease, but every time I remember him I hear him say, dear niece, whatever you do, stay faithful and true. But, for my faith, I would not be able to stand upright and wade though this murky, slough called life, with all it's troubles and griefs. Tonight, I go to bed, resting in the fact that I can truly rest knowing I serve a big God that has my world firmly in His hands! Tonight I go to bed thankful for the 5 short years I was blessed to snuggle the most adorable black eyed impish angel. Tonight I go to bed, thankful for the Amish mama's faith to forgive and I pray for peace and comfort to wrap like a warm soft cloak around each family that remembers, each girl that thinks back,  tonight as I go to bed, I thank God for my Uncle Dan and his life and encouragement and for his faithfulness, tonight as I go to bed, I choose to rest well in my creator, knowing I'm in the safest place ever, knowing His mercies are new every morning and His promises will never fail, despite disease, death, or disaster.