Jesus....Immanuel.....God With Us

I was going to go back and edit my last post and put in another song that was played at my, embrace the bald, girl night when I was through being shaved and joined the girls, it was, This Is My Fight Song. but, last week was a really rough week and that song kept goin through my head so I decided to just start this post with it.

I'm a red head!! well, actually, right now I'm a glaringly bald head ;)  but, seriously, I'm a complete ginger through and through, from the glow in the dark skin, to a paper cut will bleed for hours to every penny colored freckle, ginger is my DNA!! so, that being said, as most gingers will tell you, we react a lot of times in the opposite ways, or in really funky ways to stuff than non gingered humans. At the start of treatment I was told by my care team that how I react to my first treatment and the side effects i experience with it should be the worst of the 4 really intense treatments I have, the next 3 may be unpleasant and even overwhelming but the first would be the worst. ummm, well, nope, the first was the easiest actually, and I was like, ok, if this is the worst, then I think i'll be ok, and as long and overwhelming this path looks, I think we'll be able to get through this without to much frustration. I get my treatment bi-weekly on a Thursday and about three and a half to four days post treatment the couch claims my person for 3 and a half to 4 days then I have about 4-5 days where im starting to feel almost normal and wanting to think about tearing into life then i'm smacked up against the next treatment and the whole process repeats itself. 

Last week, after my 3rd treatment, life was brutal, it took all my energy to get from the couch to the bathroom, my whole body felt like a quivery, half set bowl of jello, the couch wasn't comfortable, yet neither was anyplace else. my feet felt cold as the north pole, while my head temps were hangin out somewhere around the equator, it was a constant battle of putting blankies on and frantically digging out from under them to grab fresh air, I have this stack of amazing head wear in all colors, sizes, shapes and styles, yet most time to wear anything drives me mad and to leave anything on for any length of time i'm fairly certain said head wear would disintegrate into smoldering ash!! Then the septic system wanted to throw a fit again, thankfully that, I was able to get managed before it went outta control like the other time. the exhaustion, I don't, and have never done well with lack of sleep, but the feeling of extreme tired, yet, laying in bed wide awake is a pain, a mental/emotional pain, indescribably all it's own, and the yawning wouldn't stop, one on top the other, which then sets the tears on steady drip cycle. I've had these experiences on a smaller scale over the years, me being a ginger and all, where even cold meds will make me feel like I am crawling outside of my body and the yawning and tears are voluntary, with no reason, and almost unstoppable until I get sleep or the meds run their course. so I've learnt to just not take the Comtrex or Nyquil or...…..but, this, these meds, I cant just run away from right now, this, this. is. what. cantankerous Blanche needs right now, so we feebly power through, though feebly is more accurate of last weeks activities, and power felt rather non existent. I was determined to just sit and be and get my writing up to date and just take each day slowly and carefully and save my energy for the evening when my family was all home and together, but, even slow and careful kicked my behind, and by the time dinner was finished I was done, and I couldn't get to bed fast enough, only to fall asleep for 45 minutes then be wide awake, the more I tried to lay still and not disturb hubby, the more twitchy I felt and nothing was comfortable. there was a constant heart beat in the back of my head and neck, I couldn't get enough water yet it tasted thick and slightly slimy which then made drinking feel choky, yet the 64 ounces or more I was to be drinking per day kept looming over my head, knowing that in doing so would also help flush out the toxins from meds which I relished the thought of, knowing then maybe I wouldn't feel so horrific, yet on top of all that, the thought of drinking more meant more bathroom runs and that made me tired  just thinking about it. my legs, especially when showering, felt like they were wrapped in long flapping hairs, or like I was standing in ocean waves with sea weed wrapping and unwrapping, around them, the bottoms of my feet are shredded, skin dried, cracked and just peely nastiness, this question, as I minced my way on tip toe to the kitchen, was asked by my 16 yr old daughter...mom, why the weird walk?? ummm, cause to walk normal feels like my heels are gonna split open down the middle, so it's easier to just not.... why are  my fingernails feeling like they are lifting off their beds and wanting to leave, yet they are tight and look normal, but even typing causes them to ache, another reason why my catching up on my writing didn't come to fruition, I cut them all short cause just a bump creates discomfort. the thought of, about the time I crawl out of this miserableness and start feeling better the next treatment will be here and we'll start this process all over again was overwhelming, and for a period, almost did me in, and I thought about throwing in the treatment towel, I don't have what it takes, i'm not strong or brave. this. is. insurmountable!! i'd lay on the couch or in my bed or while in the bathroom, or in the shower, and try and pray, but couldn't get the energy or the mental fortitude to get passed, Jesus, help me, so I just put that on repeat. while trying desperately to get my mind out of the dark and keep positive. I picked up my 100 Days To Brave devotional, and I finally managed to read, after starting over various times in between drifting off, believe you are never alone, even when you feel you are, know you are never alone, because, Immanuel......God with us.....even when we feel like we are, we never are, He will never leave our side. I laid there and just breathed, Immanuel, every time the dark started to crowd in. peace!! still feeling like a quivery blob, but peace.....finally got enough energy to pick up my phone, needing in spite of the peace to send out an S.O.S. to some of my prayer warriors, this week is rough, im not sure im ready to think of going through another treatment, I cant do this alone, please pray me over this mountain...…..Immanuel...…..as i'm typing out my rescue plea, and hitting send, I received a text from a dear family friend, Jenny in South Carolina, a message from Marita, in Montana whom I've met briefly just twice or so, both saying, wanted to let you know, you have been on my mind and prayers so much today, how are you, and know we are praying and caring and loving.....paraphrasing that  a bit, can't recall word for word, but, neither one of these dear hearts were on my S.O.S. list, neither one of these dear hearts knew my battle weary week, they didn't know, but, they know Jesus, they heard Him whisper and they acted......but, Jesus, help me.....He hears our every simple plea...….Immanuel, God With Us...….I love when He shows How much He cares about us through our support group, our community of loved ones, His church, from all over the world, how He hears our plea and passes it on to others in that little heart nudge, or whisper, and they feel and hear and obey, and  reach out and say, I felt you  in my heart and mind and prayer, and I need you to know i'm walking with you even from half way around our world. my dear cousin Jenn stopped by on Thursday, the first day of finally feeling like I was gonna be ok, and could maybe entertain the thought of making it through another treatment, and in telling her of my week, I said, I know my God can take away any side effects and help me get through this next round without any down time and frustration, but I battle feeling like, hello, you went into knowing this goes along with it, so why would you think you could escape the ugly days, I feel like im being self centered asking that for me. she was so encouraging and said she read somewhere, something along the lines of this....if it's not something that is wrong, then it's not wrong to ask God about!! later on that day, after I dropped Em at work the guy on the radio, was talking about a similar thing, and said, we need to stop minimizing our battles, and comparing with others and saying, well, but this persons going through this that's so much worse or bigger or intense, so I shouldn't even think about how hard my struggle is or even bother anyone, let alone God with it cause, well...….he said, NO!! just because our battles are different, doesn't discredit the fact that are still very real to us, and it doesn't take away the fact that God truly desires to hear from us about every single one, the battle being different, or appearing more or less than another's, doesn't make us or ours insignificant to God. it was one of those, this is something I know, have known, but needed that reassurance, that calming confirmation, that I am never alone in this, and God wants me to bring everything, no matter the scale of it, to Him, and sometimes He's just waiting to give us what we desire and celebrate a victory with us, but, is just wanting us to have a conversation with Him about it! it was also a glaring reminder how quickly the enemy can steal our joy and get us all kinds of doubtful and entwined in ourselves and our own madness of thought and insecurity!! So while I started this post yesterday, I was typing along and I get a message outs the blue from my Montana Jo with a quote, saying, YOU ARE NOT ALONE. NOT NOW. NOT EVER. DO NOT GIVE UP! and a reminder she is praying for me. an amazon package also arrived in the mail from an unknown dear soul, containing a beautiful pair of bright happy orange socks that say, I AM BRAVE across the toes and BRAVE on the bottom. my dear mama called and said, I made a big batch of fresh seafood chowder, im gonna bring some over for ya'll if your home, my cousin Jenn stopped by for a visit and snuggles with my lil boyfriend from around the corner and another neighbor, Pam, from around the other corner dropped of a supper dish. a giant treasure chest of care products and love came from my Lael, saying, I need to tell you, I care, and love and pray for you and know you are strong! there was snail mail from my over the mountain bestie and another from some dear friend of a friend ive never met, all reiterating the fact that i'm not alone, and i'm being carried, and as hard as this is, I will make it through, and when I feel I can't, they were all buoying me up, standing in battle for me, this, this is my faithful God, my Jesus with skin on!! tomorrow is treatment day # 4, the last of the seriously intense treatment, i'm ok, am ready to get this done, whatever the next 2 weeks holds, until the next regimen starts, it may be hard and ugly and messy, but, I know that I know, Immanuel.....GOD WITH US!!! and I know that I know, if all I can squeak out is, Jesus, help me, that, that is enough!! and I know that I know, He has a plethora of His heart sister, His church, His kiddos and faithfuls all over this beautiful wide world walking alongside and that is beautifully precious!!   

until next time, be blessed.....GOD IS IN HER, SHE WILL NOT FALL!!!! posting a song from my playlist, I decided when I started, I was just going to start with the top and work my way down, (with the exception of the 2 songs I shared on the, embracing the bald day) so, wow, todays song...……we can hear Jesus, everywhere, if we but listen, we can Jesus in everything, if we but open our eyes, we can feel His love for us in all, if we but open our hearts.....this song, His heart beat for me through this post, His Red Letter to me today..... 

To All The Curls I've Loved Before.....(Embracing The Bald)

Cancer, cancer side effects, chemo treatment, chemo side effects, so many things this journey entails that one doesn't always dwell on, or allow themselves to dwell on until the reality hits home and it's forced to be acknowledged. Well, not that I doubted them, but, there was that tiny thought of maybe it won't happen for me, but, my Dr. and Nurse were very adamant that I would indeed lose every bit of hair, starting as soon as the first treatment was in, they are in fact right, it started to say goodbye and thin out within a week of the first dose. In talking to them at length about this whole process, they gave many tips and ideas of how to cope and handle all the changes on top of just accepting and processing the fact that we even have to be having this conversation and dealing with this trauma of cancer. I joined a support group for TNBC (triple negative breast cancer), I hesitated to join, it seemed to join would make everything so glaringly real, and did I want to hear and see what I could be in for or what others were dealing with, would it feel extra heavy and overwhelming??!! Would it be helpful, or depressing?? Some of the advice my care team shared with us when discussing the effects of losing my hair was how to make it a part of the treatment that we can control, and how to make it a positive part of all that's going on and not that it's something to be celebrated but not let it become a huge morbid depressing negative in all this. They gave me different ideas from others who've been here and what they found to be helpful and how they coped and they encouraged me to find a support group and ask for what worked for others and talk to my husband and friends. they encouraged me to be sure and do what we feel we need to do, what we felt was in the best emotional, mental and physical interest of my diagnosis and well being at the time, that this is a very personal decision and though advice and tips and encouragement is key, in the end only what I want and feel needs to be done is important, no one else can make that call and there will be those with their opinions and possibly even criticism in whatever you decide but that in the end it's not them that are having to face this at this time. in asking for advice from my support group on what others did and how they handled this etc. one of the things that kept coming through loud and clear and also my care team had eluded to was the fact that when it starts coming out if there's any length or thickness it creates a mess everywhere, that along with the fact that there is also a lot of scalp tenderness and pain and even more so the more hair you have. wow, a lot to process and take in yet again. I talked it over with my hubby, what is the best route, how do I know, what do we decide, His answer was, you have to know what you want and feel needs done and you also need to know I am behind you one hundred percent on whatever that decision is. we prayed about it, talked about it, did some research and discussed it some more with my tribe and support group. I am the kind of person that when I know something is going to be a certain way I process then am like well it is what it is so let's just do what needs to be done and move on. I already had come to terms for the most part that I would lose my hair and had come to peace that in the grand scheme of things, even though it's not a great thing to deal with, it's also one of the less painful or permanent things in all this and only for a season, so once in my mind I had processed all the options, and came to peace about how to deal with, what do we do about the hair leaving me stage, then I was ok, and ready to move to the next phase of this messy decision. I told Glen one evening what was on my mind, and how I thought I'd like to get through this, and wanted his input on what he feels, I told him I just want to get rid of it all and be past the falling out little by little mess, and move on, and I want to be in the company of my sisterhood tribe, those that have been right by my side from the very first tear, and it be a girl night, unless he would feel like he wishes he could be here too. He said, I think if that's what you're leaning towards then that's what you need to do, I am behind you all the way and want you to be surrounded by love and support and it be a positive and encouraging time in the middle of the ugly. with the affirmation that Glen was behind me and having peace that this was my next step, along with being so done in sleeping and breathing in my own hair, and the fact that, indeed, the scalp pain and tenderness was a for real thing, I put out a casual invite to a few of my tribe and family that I was not going to let my hair leaving me become a depression thing and I also wasn't wanting to let it be something I face alone, so I said, here is the invite, the plan, it's not a party, cause it's not a celebration, but, it's a get together to face an ugly moment head on with positive and encouragement and beauty in the pain and ashes. my tribe was so on board and supportive and full of encouragement and helping in the details, I said I want it to be a relaxed evening in spite of the whole situation. I sent out an invite that read....TO ALL THE CURLS I'VE LOVED BEFORE (embracing the bald) Thursday January 24, 2019 4PM or soon as it suits you at my place. Miriam volunteered to bring pizza, Miranda volunteered to bring a salad and Beth volunteered to do fresh fruit, Paula volunteered to bring chips and drink, Laura made amazing iced coffee and I had tiny girly desserts, macrons and cheesecake bites, tiny heart sugar cookies and mini brownies. I didn't really have much of a plan as to how this was all going to go or the general scene of the evening, I just knew I needed my persons with me and my hair was gonna go altogether that eve, that this was the next step forward to the end of this cancer, but last minute I messaged Laura and asked if maybe she'd be willing to have a hands on prayer moment before we start, was feeling like I needed courage for the long haul and to remain in a place of peace and not get into a dark place of depression with the overwhelming-ness of it all, and energy and strength for my family. She readily agreed to be my person for that and assured me that it was not only her honor to do that but what better way to start the evening than surrounded by my support team and giving it all to the one that cares about every detail. So the evening arrived, my niece Kate and Sister in law Rosene arrived with gifts of fun hats and other comfy's, Susan brought gorgeous roses and Miranda brought a bright happy bouquet too and everyone just hung out and chatted and there was an air of peace and serenity, a feeling of this may be ugly but what we have here as a group/sisterhood/tribe is beautiful and we're all in this together. when everyone was here and we had mingled awhile and chatted we got started, I got my new pretty aqua office chair wheeled out to the dining room, then Laura began with a worship song that was absolutely beautiful and so fitting, it was a new one to me and I soaked it in and loved the truth and life spoke in every line, after the song she asked for whoever would want, to join her in laying hands and praying, it. was. so. beautiful. God......was so close, you could feel Jesus in the room, bringing us all together, shining light in the center of all the trauma of this situation, you could feel peace in spite of all that this disease wanted to rob of us. after prayer and many tears, I sat upon my office chair throne and asked that my hair be braided in tails and the tails be saved, I don't really know why, I just wanted them, maybe for my kids, maybe for me, maybe cause a few of my people said, please send one to me, we want to keep one, I don't know, but the braiding began and then the cutting and it was all kind of surreal, I felt so surrounded by love and support and it all felt so beautiful tho achingly hard and I was at peace, so very peaceful the whole time, and overwhelmed that my persons would so willingly stand by me and love me through this in spite of the hard and ugly and seeing how difficult it was for them to accept and yet they wouldn't have chosen to be anywhere else is priceless and so very precious. once all the hair was gone, Paula ran a razor over my head, amazing how much wind is around the top of ones head that you don't think about when it's fully haired! I had researched some stuff when trying to come to a decision on all this and I decided rather than have my head glaringly bald from the get go I wanted to put something meaningful and pretty there, so decided on a henna design, I found 2 I loved and mashed them together with my verse, GOD IS IN HER, SHE WILL NOT FALL and another verse, HE CALLS HER BEAUTIFUL ONE. Beth told me the girl she used to babysit does that kind of artwork so I got in contact with her and after the hair was gone she arrived with her mama and did an amazing job of cutting the glare on my head and making it feel beautiful. Jonaki is a beautiful young gal of 13 and has an incredible talent, and such a lovely spirit, she did her gift on my head in quiet, steady confidence. somewhere along the evening my men got home from work and snuck in the upstairs attic way for showers, my hubby, a man that is not a public displayer of affection and usually would hide away at a get together like this, joined us all, I didn't know he even had gotten home, but he came down to the kitchen, found me in the dining room and with tears, kissed me and told me I'm beautiful and he loves me!! OH! MY! HEART!! in the back of my mind without me really realizing it, was that fear hanging around that what if he cant stand to look at me or what if I gross him out.....his words and actions took that fear away. he stayed and joined in with pizza and hanging out and chit chatting, the support he found their for me and for himself was beautiful. after the evening was over, we all kind of crashed, in a good way and talked about it all and basked in the beauty of peace and friendships and support and life words and the blessing of being gifted and surrounded by unconditional, unselfish love and support. I went to bed very grateful that these hard, hard ugly life moments didn't have to be walked alone and for an evening of more adjustments being filled with Jesus and peace!! my prayer would be that no one else would ever have to face this ugly disease, but, if you should, I wish you a room full of ladies that are there to stand by you unconditionally through the good, bad, ugly, the laughter and the tears, that when the way the mountain looks insurmountable, you have a strong love filled tribe that comes alongside and reaches for your hand and guides you on the next step up and over that mountain!!  GOD IS IN HER, SHE WILL NOT FAIL!!

this song was the worship song Laura played before prayer....I think I'm missing some pics too, but I cant find them, am thinking some must not have downloaded right for me, but this is a collage of what those there sent me.......